Small Steps

numbers games in the holidays?!

2011-11-29T13:12:00.003-05:00

Oh my! It's that time of year, when the baked goods are flowing, the leftovers, teaming with creamy buttery goodness are calling and the chocolate......oh my! I forgot how challenging it is to maintain your weight during the holidays. But of course, I'm not working at maintaining. Ellie needs to continue to lose. Good grief Charlie Brown.

I should have written down the great two days we had last week when she dangled her toes so close to the waters of the 'overweight' category. She came within a 1/4 lb of leaving the 'obese' category behind. But then Thanksgiving and family visiting, and mom baking cookies. We took a step back from the 'overweight' waters. Today I measured her height and weight again and the good news is she grew a fraction of an inch. But the bad news is she gained 3/4's of a pound. Bad mommy! So we are back on the healthy food program. We did have lots of healthy activities over the holiday weekend: playing soccer and jumping in leaf piles outside and playing hide and seek inside. But now that we are on a break before the next holiday I must return us to our numbers game. We have found so many good foods that help keep the weight off, and it's time to make sure that they are the staples of Ellie's diet again. So no more hide and seek games with the chocolate chip cookies. Maybe instead we can celebrate Christmas with a gift of better healthier weight for Ellie.

Time to bring in an expert

2011-07-18T07:48:00.002-04:00

Standing at the wall, measuring height this morning I was pleased to see that Ellie has grown into the height she was pretending to achieve on her tippy toes last month! She is now truly 3 ft 7 1/2 inches tall, but unfortunately her weight has gained by a pound and a half. Rats!!! I had been celebrating all those new vegetables that she had tried, and her reduction in carbohydrates. Apparently it's just not enough.

As a result, today we are taking a long car ride. We are braving Northern Virginia traffic to meet with a dietitian who has worked with children struggling with obesity, celiac, other food allergies and cholesterol issues. She has also worked with children who have Down Syndrome, and some of these issues. She seemed very nice and approachable on the phone. I'm hoping this goes well, and that I get some really positive feedback and ideas. I desperately want Ellie to develop a healthy weight and lifestyle.

21 Again

2011-05-31T08:17:00.002-04:00

No, not me!! I don't feel like I'm 21 again - all those aches and pains after a weekend of gardening....where's my motrin?

21 is the magic number I got my princess back to on the BMI scale. She grew a little more and dropped a pound which means the BMI is slowly going down. Yay! Her diet has been healthier with veggies, fish, yogurt, skim milk, veggies, chicken, some salsa and gluten-free chips, and a little air-popped popcorn. We did splurge a little over the holiday weekend with some TnT's pork barbeque and hotdogs, and ice cream and brownies a couple of nights. In the middle of last week her weight was a little lower than it is right now. But we'll get back on the wagon today since the holiday is over and our company is back to their own homes.

She has been so much more active this spring than at any other time in her life. Every morning before school she is playing soccer with me. Used to be "soccer" would last about a minute. She'd kick the ball to me, and I'd kick it back and we were done. Now, she is kicking and following the ball - dribbling across the yard and giggling the whole way. Of course, because I only get my turn when the ball gets stuck in a garden or under a car! It's the best though - I love to see her having fun, running around and not afraid to navigate the environment. Knowing that she is getting healthier and developing those great life long habits makes my day!

Two Steps Forward, One Step Back

2011-05-19T11:52:00.002-04:00

Well, I have been negligent in tracking everything it seems. Today I jumped back on the band wagon. I checked Ellie's height and weight. Lo and behold, she grew a bunch: 3' 7 1/8", wow!! However, so did her weight! Now she tops the scale at 57lbs. Geesh!! Her BMI is 21.5 at those numbers. At least she stayed in the 98th percentile and didn't creep back into the 99th percentile.

I've started a food journal for her, and think I'll get the app my sister uses so I don't have to remember to carry various notebooks with me. I've also been treating Ellie to a little ice cream some evenings - guess that's off the list. She's been on antibiotics this week for an ear infection and those mess with her gut. I'm hopeful that this was a little bit of a fluke and next week her weight will have gone down a bit. It's shocking to see she gained 4 lbs in 2 months. Good grief!!! I have to do better for her.

Slowly dropping BMI

2011-03-06T09:29:00.001-05:00

Well, I thought she had grown and I was right. A quarter inch makes a little bit of positive difference. Today she weight 53.2 lbs and stands 3' 6.25" tall and that takes her BMI to a solid 21.0. Yea!!!

It is slow going, but I do see a slight improvement in the conditioning of her legs and the shrinking of her belly. Most importantly I see better choices and more endurance for physical activity.

Wonderful! Keep up the good work my little one :)

"Roots and Wings"

2011-02-25T08:21:00.003-05:00

There's a saying that I have on a cross-stitch: "Give your children two things: One is roots...the other wings." Today my (not so little) son is spreading his wings in his first solo flight from the nest. As a proud mama bird, I am sitting back and letting him go. It's not easy, and it is, oh so, bitter-sweet. He is my first-born, my first baby. He has made a few smaller solo flights before, and each one of them has been such a success. Now he is grown into quite the young man, at such a young age too. He is ready for this big solo flight. I trust his roots, I know they run deep. They will keep that internal compass heading him in the right direction. I trust those fine, feathery wings to carry him aloft and far on his journeys, and always to have the strength to make it home.

Advocacy on both ends of the spectrum

2011-02-18T14:03:00.002-05:00

Well, today I put my "advocating for the highly gifted" hat on, and took off, momentarily, the "advocating for the special needs" hat. We'll see where I get with it. My 6th grader just started science (they teach 1 semester history, 1 semester science in middle school). He could pass the 8th grade Science SOL before 6th grade science began. His science teacher is very excited, but also limited in what she can do. The range of knowledge in the students in her classes is rather w - - i - - d - - - e. So we brought in the guidance counselor who is very supportive of differentiating somehow (we all haven't quite figured out how yet), and now we are on to setting up a meeting with the principal who is very open to discussing this. I'm not sure what that means yet, but it does sound promising.

Get out and get moving - enjoy this spring like weather!

2011-02-17T13:55:00.002-05:00

Today is a swim team day, but unlike other days this year, Ellie will not be hanging out at the nursery in the YMCA. I cancelled the family membership, well, changed it to a student only membership for her big brother, the swimmer. Ellie and I will be outside today. It's gorgeous outside and since she feels better I am putting my new plan into action.

I am packing some bubbles, a soccer ball and a change of clothes! We are going to have our usual picnic dinner in the car, but then we are going to the playground with our balls and our bubbles so that Ellie can work on some oral motor and gross motor skills. In addition, she can just get moving and work on losing some weight :) Next month she starts soccer, and I want her to be ready!

Stomach Flu or Food Poisoning - either way, you lose weight

2011-02-16T14:42:00.002-05:00

Well, a line from a favorite movie of mine "The Devil Wears Prada" is "I'm only one stomach flu away from my goal weight." Or something close to that.

Friday night after Kids Zumba and chick-fil-a, Ellie fell asleep in the car on the way home. She woke around 11pm with some running stools. Ok. I should have warned you that this was going to be gross. Sorry. You're forewarned now.

About 30 minutes later she woke up, and started the vomit-o-rama. For the next 8 hours the poor thing couldn't keep anything. anything. anything. down. Not even the tiniest sips of water. Bless her heart, she was able to indicate to me when we had to race to the bathroom or grab the trashcan. She didn't miss once. I did. I fell asleep somewhere between 3:38's retching and the next call to the can. I tried to pick her up but couldn't make my body move. We'd already been to the bathroom about a dozen times, and at 54 lbs, low tone, and extreme fatigue. Well, my body had stopped being able to lift her easily. My dear, sweet husband got all the laundry started and helped lift Ellie on one side while I supported her on the other for the next few hours till her tummy finally stopped revolting.

The next few days were quiet and she didn't eat too much. The net loss has been over a pound. This is not the way to lose weight, but I guess every small step counts.

I calculated her BMI today:

Age: 6 years 2 months			Sex: Girl
Birth Date: December 02, 2004			Height: 3 feet 6 inch(es)
Date of Measurement: February 16, 2011			Weight: 53–1/4 pounds

Results

Based on the height and weight entered, the BMI is 21.2 , placing the BMI-for-age at the 98th percentile for girls aged 6 years 2 months. This child may be obese and is likely to have health-related problems because of weight and should be seen by a healthcare provider for further assessment.

How far do we have to go?

2011-02-07T11:46:00.003-05:00

Well, I just finished calculating her BMI using my handy-dandy children's BMI calculator (from CDC, thank you!). Turns out we have a LOT of small steps to take in order to get Ellie out of the "may be obese" category, and into the "may be overweight" category. At this age and height Ellie needs to weight 47 lbs 0 oz. in order to get to a "may be overweight" BMI category. That's a net loss of 7.2 lbs. Okey-dokey, let's get to work mom!!

Back after a long break

2011-02-06T23:01:00.003-05:00

It was a busy fall school season, and I did keep track of Ellie's weight. It went up and down a little bit, but by the end of the holiday season she was about 56 lbs again. As I started a new year, I had to start a new plan.

Last fall I didn't add many veggies. I meant to. I had good intentions. Something was lost in the process of making menus and getting to school and swim team. I ended up making the same thing most days. Since Elllie doesn't eat salads, there weren't many vegetable choices for Ellie.

2011 brings a total change for her, and for all of us. As of this morning she is back down to 54.2 lbs. She has also grown a little bit more topping the chart at 3 foot 6 inches. The combination has moved her BMI a little bit to 21.6. This is down from September's low of 22.6. Yes!!

This is why the blog is called Small Steps. Slowly. Ever so slowly, we are making progress. It's taken us 5 months, but that BMI is starting to budge. I have a lot of faith in our ability to make it budge a whole lot more this year.

How are we doing it? It's really simple, common sense. Less in (and better choices of food), and more activity. We have cut all school lunches. The sodium, calories and fat content were just unacceptable. Ellie drinks milk 3 times a day: with her cereal at breakfast, at school for lunch, and with me every night at dinner. She never drank sodas, but really loved her orange juice. Even with the calcium added, it's not as healthy as a glass of skim milk.

What else? I measure foods, especially carbohydrates. Ellie loves her carbs, so until I get that BMI to a healthy number, she is going to have limited carbs - 4 servings a day. Since I can't eat lunch with her at school, I send a healthy lunch I know she will eat. While I include a fruit or vegetable, they usually come home uneaten. At dinner it's a different story. I insist on veggies at every dinner. She has to eat them before she eats the stuff she likes. After a month of disagreements, it turns out she actually likes some of the veggies!

I have been trying all sorts of new foods, and not just for Ellie. The whole family has taken a trip on the vegetarian train. We still eat fish and poultry, with the occasional serving of pork (once a month). The red meat is out the door, as Rajiv on Outsourced says, "Please don't touch the cow." We purchased a pressure-cooker after the holidays and with the help and encouragement of some Indian friends we have learned how to make several dals (lentil dishes) and a great marinade for chicken. This week I will try some chole or chana (chick pea) dishes and a few other new recipes. I made a slow-cooker Indian Chicken and vegetable stew that both kids loved!

The last part of our plan of small steps to a healthier weight is more activity. Ellie is moving and grooving more at home through games with her brother, dancing with mom and just generally being encouraged to get up off the chair :) It's slowly working, and I'll keep you posted.

Net Loss after the first week of school lunches . . . .

2010-09-13T12:49:00.002-04:00

That's no joke! I wasn't sure if I should allow Ellie to eat one of her favorite meals - the school lunch. Loaded with calories, many coming from fat, and lots of sodium - school lunches are not the healthiest thing on the menu. They are unfortunately a necessity for 50% of her classmates who rely on reduced or free school lunches to make it through the day. That's part of the reason for the high calorie meals. Kids in poor families may not have access to good nutrition at home and need to have at least enough calories to make through the day. I still don't understand why healthy food is so expensive but that's for another post.

I watched Ellie's weight creep up a little bit throughout the week, with some trepidation. She had a low of 54.8 lbs on 9/6/10, the day before school started. Through the week her weight rose to 55.2 lbs on Saturday 9/11/10. However my dear spouse reminded me that unlike us who just get fatter when our weight rises - Ellie is still getting taller. He wondered if she had grown any taller since I last measured her height. Low and behold he is a smart bugger! Ellie had grown a 1/2 inch since August 24!! This brought her BMI down on 9/11/10 to 22.6 from a high of 23.2 on 9/5/10 (her weight that day was 55.4lbs).

She gets to celebrate her hard work and success by enjoying another week of school lunches. Personally I'd rather have chocolate!

Hooray 2 1/2 weeks in, 2.8 lbs down & she grew 1/2 inch!

2010-09-11T11:30:00.004-04:00

So today I was castigated for 'fixating' on the weight, but it paid off! It's amazing how much poop can weigh, by the way. And there's a lesson for me to re-learn, and pass on to you in this post.

So being a Saturday morning, we slept in a little bit. Ellie and I headed downstairs at 7:30am. I had to rush out the door to get the recyclables to the curb before the recycling truck headed by. Then I made breakfast and ate outside on the deck. Gorgeous weather and a relaxing Saturday morning are a perfect combination! After a breakfast of hummus, whole grain pita chips, skim milk and red grapes I finally got around to weighing Ellie. Big mistake - she was heavier by quite a bit (56.8 lbs). I also checked her height and she has grown 1/2 an inch since August 24 when I began tracking her height and weight. Yea!

As I was getting ready to give her a bath, she pooped - so I took the opportunity to weigh her again. Low and behold, poop weighs 1.5 pounds! She was now down to 55.2 lbs and with her height now at 3ft 5.5inches she has a new BMI of 22.6. Still in the possibly obese category, but a big drop from August when her BMI was 24.3. I've been watching Ellie's weight slowly creep up this week from a low last week of 54.8 lbs (before school started). Seeing Ellie grow 1/2 an inch and this BMI adjustment was great encouragement that overall she is improving.

The lesson I re-learned and wish to share today is to always weigh yourself at the same time (in order of events) each day. If you always weigh yourself after you get up and pee, and before you eat, then do that. Don't eat first and then weigh yourself - if you do that make sure you give your body time to process that meal (quality bathroom time!) before you weigh yourself. I drink 3 cups of coffee and have a bowl of cereal with milk and fruit each morning. After several trips for quality bathroom time - Surprise, surprise that weighs 2.5 lbs!

Next steps: Confirming my source, and what would a lawyer tell me to say?

2010-08-25T08:05:00.005-04:00

So, I've been doing more research and found at the American Academy of Pediatrics website a graph that actually says my sedentary daughter should be eating up to 1200 calories a day. Phew. 1000 was difficult to get to over the past few days. We've been in the 1100's but not down to 1000 yet.

Here's the chart as I've cut and pasted from the American Academy of Pediatrics. You can reach it from this link. I imagine that if you feel that your child is obese, or significantly overweight you should first talk with their pediatrician before beginning to develop a weight loss program. If I had lawyers, I'm sure they would insist that I write that into this post. Also, I'm sure that they would insist that I tell you that I am not a medically trained professional (I can't stand the sight of blood), nor am I a trained dietician.

What I am is a mom who has a brain, can do research and realizes that a lot of life is really boiled down to common sense. For instance, to lose weight eat less, move more. More on that next time.

Return to article

TABLE 3 Daily Estimated Calories and Recommended Servings for Grains, Fruits, Vegetables, and Milk/Dairy by Age and Gender

	1 y	2–3 y	4–8 y	9–13 y	14–18 y

Kilocalories^a	900	1000
Female			1200	1600	1800
Male			1400	1800	2200
Fat, % of total kcal	30–40	30–35	25–35	25–35	25–35
Milk/dairy, cups^b	2^c	2	2	3	3
Lean meat/beans, oz	1.5	2		5
Female			3		5
Male			4		6
Fruits, cups^d	1	1	1.5	1.5
Female					1.5
Male					2
Vegetables, cups^d	3/4	1
Female			1	2	2.5
Male			1.5	2.5	3
Grains, oz^e	2	3
Female			4	5	6
Male			5	6	7

Calorie estimates are based on a sedentary lifestyle. Increased physical activity will require additional calories: by 0 to 200 kcal/day if moderately physically active and by 200 to 400 kcal/day if very physically active.

Back in Action - "Eat healthy. Lose Weight"

2010-08-23T22:19:00.003-04:00

"You know where that comes from? Watching that da*# TV."

Seriously.

Those quotes, for those of you who are not movie afficionados, came from "The Nutty Professor", with Eddie Murphy. And studies have shown that obesity, and especially childhood obesity, comes from a sedentary lifestyle that involves watching too much da#% TV.

Oddly enough, although I'm very careful about my eating and exercise and that of my husband - apparently I was a slacker parent. Somewhere over the last two years I wasn't paying close attention to my daughter's eating habits and she put on weight. More than a typical 5 yr should, especially one who is vertically challenged. And since she is not inclined to be as active as her brother at the same age, it is adding up. I feel like such a schmuck. As the stay-at-home parent I should have realized this. My hubby said something on several occasions, and I was doing the "can't see the forest for the trees" or the "ostrich head in the sand" thing.

Well, last week I read an article at the Washington Post about back to school and school lunches for kids. That was the real eye-opener. Of course I forgot to pull my head out of the sand first - that sure stings. The article breaks down by age groups the number of calories a day an active vs. a sedentary child should be eating. On page 2 I got a stunner: a 4-8 year old sedentary child should be eating only 1,000 calories a day! Holy crap on a cracker. I knew my little Ellie was packing way more back than that, and she loves to sit down and feed her baby doll, or read books (sitting) and of course watch TV.

So what did I do about this? Well, it took me a week to get my head out of the sand! Then I realized I needed to start by collecting data. I began this weekend to keep a food journal for her. It has been both eye - opening and encouraging. We've kept her caloric intake to 1170 calories or less, and we've gotten a few veggies "over the lips, past the tongue, look out stomach here they come!"

Spread the Word

2010-03-01T10:58:00.001-05:00

Low Salt Cooking to Avoid High Blood Pressure and the various meds . . .

2010-02-08T23:17:00.008-05:00

Well, how do you like that. I thought I was the salt 'nazi' (and i'd really like a better noun there, just haven't gotten my creative juices flowing in that direction). I was looking at labels, buying no-sodium chicken broth (it really is flavorful) and beef broth, making sure we have lots of whole foods and especially produce in the kitchen. There's a huge bowl of apples, bananas and clementines on the counter. My produce drawer always has salad fixings, and if you're really lucky you can even find some of the slimy, hidden-at-the-back-of-the-drawer-variety of produce too. We've cut back on the red meat and dramatically increased the chicken and fish. Our lunch meat and cheeses include a variety of low-sodium choices as well. I thought I was doing so well. I was keeping the sodium under 2000 mg a day, and for those who really need it - way lower.

Then, the snow storm of hte century was upon us. Our idea of preparing for it was an extra large order of chinese food.
Sounds like I covered all the bases, right? Well not if you read this article in the LA Times from June, 2009, titled "The hidden salt in chicken". I was shocked, I tell you. This is outrageous!! For those of us who are trying, desperately, to create a healthy and yummy low-sodium and heart-healthy life, chicken is essential. Now to find out that most of the birds roosting on the store shelves are filled with extra sodium is really annoying. I'm not endorsing any brand but Foster Farms does say on their website that their chicken does not have added sodium. I haven't checked my local stores yet to see the truth on the labels. That's for the next post - once snowmaggeddon ends and the kids go back to school I can wander the aisles in peace. If the kids stay home any longer it will become their homeschooling project.

changes are coming

2010-02-04T09:44:00.004-05:00

I have been neglecting this blog as I ponder my future writing endeavors. I enjoy writing about my kids, but I have been feeling the need to share more of my knowledge base than this blog is really intended to cover.

As a stay-at-home mom these last 10 years I have become a expert home economist. Anyone who cuts their family budget by more than 50% and adds a mouth to feed, cloth and insure (health wise!) knows that requires some real creativity. Our family has moved twice across the country, bought in a seller's market, sold (twice) in a buyer's market, dealt with a variety of health issues, added another mouth to feed, cloth and insure - that one came with here on special needs as well. Somehow through it all we reduced our debt-load, increased our savings and still had fun!

Our income has risen over the years, but so have our financial burdens. Through it all we've learned what we really need and want to find enjoyment in our lives. We know that there are many who struggle more than we ever did, and we are always looking to share what we can with those in need. We have learned to eat healthier, reduce our carbon footprint and enjoy a wide variety of activities all on one income. How have we done it? That's what I plan to share with you. Exciting additions are headed your way - stay tuned.

storm prep - non-potable water without the waste

2010-02-04T09:35:00.004-05:00

it's always good to have extra water on hand during hurricane season. Water for drinking, water for flushing toilets. We never knew that Fredericksburg would be such a stormy place. Tornadoes, blizzards - these weren't in the description we read! Living out in the country, or living in a suburban neighborhood - everyone can lose power in an ice storm and you never know which way a tornado will track. It's a good idea to have a storm kit - batteries, flashlights, canned food, dry food (remember to pack a can opener with the canned food!), drinking water for everyone, toilet paper, paper towels, etc.

We usually fill the tub with water to flush the toilets, but have not had to use that water so it just goes down the drain a few days after the storm has passed. That seems like such a waste when I am trying to reduce my carbon footprint, and conserve resources - especially water! So we hatched on a new idea - cheap 5 gallon paint buckets with lids. We can fill them and keep them covered. That way there is always water so if power goes out for any reason - especially the unexpected reasons, we have water and can flush away! Also, if we have gone for a couple of months without needing it - I can use that water to water my plants and then refresh it with new water so it doesn't get gross. Your local hardware store carries those buckets for around $5, including the lid so it's not a heavy burden on your monthly budget, and since you won't be drinking the water you can always use the buckets for other projects if you need to.

Heart & Waistline Healthy Eating - yum. "But it's green soup. Eeww - gross"

2010-01-25T12:35:00.002-05:00

Mom's Green Soup, aka Broccoli Soup (this came from about.com, I've modified slightly)

1 Tbs olive oil
1 medium onion, finely chopped
1-2 stalk celery, finely chopped
**1 medium Yukon Gold potato, peeled and cubed
4 + C fresh broccoli, including stems, chopped ( I had about 5 cups)
2 C no-sodium, fat-free chicken or vegetable broth (Maggi brand makes a no sodium bullion)
1 1/2 c skim milk

** I didn't have any potatoes so I substituted instant mashed potatoes, stirring them in after I processed the cooked veggies.

Preparation:
Heat oil on medium heat in a soup pot or Dutch oven. Gently saute onion and celery for 3-4 minutes, until onion is softened. Add potato and chopped broccoli, followed by the broth and milk. Bring to a boil, then reduce heat, cover and simmer for 20 minutes, until vegetables are tender.

Allow soup to cool slightly, then transfer to a blender/food processor in 2-3 batches, and blend/process till smooth. Return soup to pot and heat gently until read y to serve. *** if using instant potatoes add them at this point.

No, the kids didn't try it. But I have to give them credit. They eat lots of healthy stuff : hummus, home made whole wheat bread, salads, just about any veggie raw, and cooked carrots (well Ellie likes french fries and catsup - other veggies she's taking under advisement right now), Weight Watchers Chicken Marsala (minus the mushrooms unless I sneak them in Ellie's rice somehow), Salmon, and just about any chicken really. They don't eat lots of junk food, and they avoid most fast food. Alex refuses to eat any fast food with two exceptions: non-chain pizzaria pizza, and hot dogs. Ellie will eat Chick-fil-a, and Alex can digest it, he chooses not to. Subway is a safe bet, we finally have one nearby but a sub just sounds, eh, not so interesting. I'm pretty lucky as a mom not to have to wage the fast food war with my kids.

That's why I didn't make them eat the green soup. "What is that mom?" Alex asked at the table. He likes raw broccoli. "Oh it's a really yummy brocolli soup. Do you want to try it?" I replied with the least amount of emotion possible. I figured a "beige" voice might encourage without any insistence. "NO. I mean no thanks." He quickly stuffed some toast in his mouth. Rats. Well, I tried. They had scrambled eggs and whole wheat toast for dinner. Our eggs are heart healthy - 1/2 eggs and 1/2 egg whites beaten and scrambled with just a sprinkle of salt and pepper at the table.

So what's the green soup like? Surprisingly good. My taste buds have adjusted to the low-fat low-salt flavor. This soup is very flavorful with that in mind. It would be wonderful in the summer, served chilled.

Resolving to eat healthier . . . So how'sthat going for you?

2010-01-10T08:54:00.006-05:00

Ellie is a carbaholic. If she isn't asking for french fries or pop corn then she is looking for chips and crackers. As a person with DS she already has a tendency to be heavy, so I am trying to improve her diet. We, ok, I, didn't pay to much attention as she packed away a lot of goldfish and crackers and snacks in general last year. This year I have become the snack scrooge. For several months I got her eating bananas if she wanted a snack. Her second favorite food group is meat. I used to think she was a carnivore.

On top of her desires to carb-out I struggle to find low-salt, low-fat healthy alternatives for the rest of the family to avoid issues with heart disease that are genetic in nature. Such an easy thing to do with kids. Ha ha! Ha ha ha ha ha ha ha ha ha. Oh, hold on and let me catch my breath there.

I've been lucky though. My oldest is an amazingly healthy eater. His favorite snack is organic granny smith apples. He shuns the food at the school for homemade sandwiches, and he absolutely REFUSES to eat fast food. This includes most, but not all, pizza places. If he totally refused pizza I would wonder if he's an alien. The mom & pop pizza shops are cool with him, and he loves calzones with lots of different meats in them, so he has to be human.

Unfortunately Ellie doesn't always follow her brother's example. Veggies are a word we "whisper" in our house. Hopefully she won't realize she's actually eaten any. It may turn her to stone. I'm not sure what she's got against them. She does occasionally lick a carrot or a tomato, then she realizes it's going to kill her and she dumps it like a hot potato. Now, that's a veggie she will eat, in french fry format. Assuming there's lots of ketchup. In fact the ketchup to french fry ratio has to be just. so.

Tonight was a good night though. I made a family favorite: sockeye salmon two ways. That's actually two different recipes. One is our original favorite. I modified a recipe I got from a store in Alaska. I call it Dianne's Hawaiian Sockeye - well, that is till I come up with a better name! The other one is a recipe I got from the American Heart Association (I think) for a very low sodium salmon dish. There's about 70 mg of sodium per serving! The kids don't care for that one as much, but they love my old salmon recipe. I serve it with fresh steamed white rice, a salad and a glass of milk. All the food groups are covered, lots of omega-3's, low fat, and for the grown-ups it's also very low-salt. After that we headed to the gym for swim team and a work out for me. Finally - we are getting on track for our resolutions. Ellie loved the salmon and the rice, the salad - not so much. We'll keep working on that, we've got 11 1/2 months!

Happy New Year, take 2

2010-01-06T22:23:00.003-05:00

Ok. so I haven't written in a while. Life's been crazy getting ready for the holidays on top of the normal crazy school and after school activities. I've been meaning to write. Really! I've had all these good intentions, you know. You can tell there's a New Year's Resolution coming up, can't you? Of course you can. (insert drum roll) It's Resolution time of year. (drummer sighs a heavy sigh) So?

Ok, so I wrote a bunch of resolutions. I really did intend to stick with them. Really! In fact a few of them I got a jump start on before New Year's. I cleaned out my coupon binder of all the expired coupons - turns out it was more than half of them. I typed my grocery list into the computer and sorted by department, in the order I usually go through the store. (part of my resolution to find more time in the day) This saves tons of time over the long haul as I can zip through the store even faster with my yellow highlighted list. My first grocery trip using my coupons and my list was faster and saved me $20 in coupons and bonus buys!

Another resolution I made was to get my address book into the computer. (part of my resolution to keep in touch with people better) This is partially completed. My address book was double its size with lots of napkins and scraps of paper with people's addresses and phone numbers and emails. I threw all those scraps away on my Christmas vacation - hooray! They are all in the computer as well as a few of the actual addresses found on the various *pages* of the address book.

In the midst of a crazy-healthcare-crisis-week (personal family healthcare crisis, not the national health care crisis on the headlines most days) I even stuck to yet another Resolution. Getting birthday cards out on time! My sister will be opening her hand made (rather manic looking given the insanity of the weekend) birthday card on The Day. This is a first in a llloooonnnggg time. I'm very proud of sticking to that resolution so far, and hope to really make that one stick like glue all year long. Hopefully the rest of the cards I make will look a little less manic. The card's reflection off my internal thoughts was a little creepy.

Also in the midst of the personal-family-crazy-healthcare-week I did manage to cook healthy home made meals for breakfast, lunch and dinner. Part of the eat healthy, move healthy, be healthy Resolution. Well, till today. This was the camel's back is breaking sort of day that makes you say, "Chinese Take Out and Chocolate Chip Cookies Please." On my way to pick my son up from school, before the tardy bell had even rung, I got a call that my grandmother who was the picture of health for 92 years old, had died after a fall yesterday. Pass the chocolate chip cookies please. The rest of that resolution will have to take 2 and wait till next week.

Bowling Was the Greatest Educational Experience Ever

2009-10-02T21:04:00.004-04:00

I didn't think I would ever utter a sentence like that. Don't get me wrong, I like bowling. Once I get past the loud noise, cavernous environment, wearing other peoples shoes, and smoke - oh, right bowling alley's are smoke free now; well then I like bowling. I'm more of an outdoorsy kind of person. But, then something about the competition, it gets me all fired up. I walk in with a sort of, ho hum I-could-take-it-or-leave-it attitude, and then after the first 2 frames I'm hooked. Not that I'm any good mind you! I have had more (way more!!) than my fair share of gutter balls. Personally, I'm a fan of bumpers!

Maybe that's why it was such an educational experience for me tonight. You see tonight was our grand finale for bowling with our Young Athletes. We practiced for the last 7 weeks with real bowling balls and homemade pins at our usual venue at the Paragon Gymnastics. They are so generous to donate space for our athletes every week. However, the true effect of bowling is lost without the 'alley'. So tonight (insert drum roll here) we trekked on down to Leisure Lanes where the older Special O athletes practice every week. Our young athletes got (for some of them) their first chance to bowl in a real bowling alley. Sometimes our kids have sensory issues where flashing lights or loud noises are upsetting (that sounds familiar). This alley is great that they tone down the music early in the day, and the lights are up, and they don't have strobes or other flashing lights. The kids whooped and hollered just like any other folks - maybe we got a little bit more excited at our end of the alley, but hey, we were having a great time.

This was Ellie's 4th time in a bowling alley. However, this was the first time she played. In the past, she didn't know the game, and was probably bothered by those sensory things so she was more interested in running off. Tonight she stayed, sat in the seats, cheered on her team mates and took her turn. Every time she cheered and high fived whether she struck some pins or rolled a gutter ball. The excitement of the game: playing with friends, taking turns, sharing and enjoying everyone's company - that was the important stuff. Interestingly enough, the big kids (the older sibs of our young athletes, their friends, and a wonderful older friend to our young athletes who is super Special in his own way) those big kids, and our little kids - they got the same scores. So our abilities or our disabilities, when you come right down to it: they don't mean a thing. What we really have to ask ourselves is: did you have fun? did you make friends? would you want to do it all over again? And the answer is: Unequivocably, YES! I can't wait to put my feet in someone else's shoes again.

What's your #? Mine is 9693

2009-08-20T22:35:00.002-04:00

That's how many steps I took today.

My husband gave me a pedometer, and I tried it on today on a whim. I was curious just how much walking I do in an average day. Mind you, I haven't been running much at all since I got whooping cough. That's a whole 'nuther story. I'll write it soon.

So without a cardio workout I was curious how close to the 10,000 step goal I come on an average day. I was happily surprised to see that without any extra walking I come really close. If I had done any cleaning today or yardwork, I would certainly have made the 10,000 steps. Now according to this article at about.com my lifestyle is considered 'somewhat active' since I managed to wrack up 9,693 steps and that does NOT include any workout or walk. I just went to the WalMart Super Center. Woo Hoo! Guess that explains why I haven't gained any weight even though I haven't been running.

I am curious to see how many steps are in an average run. My next run is Saturday, and I will be sure to wear the pedometer and report back. But what I really want to know is why I still haven't lost the baby belly with all these steps?? Guess some things just aren't meant to be known.

Will you say Hi?

2009-07-09T22:23:00.014-04:00

Such an easy word to say. Well, sometimes. If you see some one who is homeless, do you smile and say, "Hi." Or do you look away? If you see someone who is in a wheelchair, do you smile and say, "Hi." Or do you look away? If you see someone who appears to be Developmentally Delayed, or mentally impaired; do you smile and say, "Hi." Or do you look away?

I know that it is uncomfortable to be presented with the impairments of others. I know that awkward feeling when all is right in your world, and you meet someone who does not have the same abilities or opportunities or fortunate circumstances as you; and you just don't know what to say. Before Ellie was born I was like you. I didn't know what to say. I didn't know what to do. I didn't want to say the wrong things, or do the wrong things and make anyone uncomfortable. So I just didn't say anything. I looked away, or somehow avoided the situation.

That cold, snowy day in December, 2 days after Ellie was born, when we first received the news that she might have Down Syndrome changed everything. All of the sudden I realized, in a very gut-wrenching way, that people with disabilities are. just. like. you. and. me. This beautiful, joyful, smiling baby wasn't someone that should be shunned. I don't know why it took being a parent to a child with disabilities to finally get it through my thick skull. It's not that I shunned people with disabilities before. I had worked at a local printing company that had a Goodwill Worksite and I would visit with the Goodwill employees in the cafeteria. I still remember Richard. He had a great work ethic and a great sense of humor. But outside of work, I didn't interact with people with disabilites.

I have sometimes wondered if Ellie's DS is some sort of sick pay-back for my overly frequent use of the R-word as a teenager. But then I remind myself that I don't think God is vindictive or mean or spiteful. Down Syndrome is just one of those crazy quirks of genetics - if you stop to think of the odds of having a child withOUT disabilities you get pretty bowled over.

But what happens when these cute kids who stay child-like so much longer than the rest of us, grow up? Are they accepted in society? Is there a place for them in our circle of friends? Is there a place for them in our church group? Is there a place for them on our softball league? How do they make connections and friends in the community at large? I wonder about Ellie's future as an adult. Will she make lasting friendships and connections with others or will she be alone? Being an eternal optimist, I try not to worry about this. I hope that the future will be bright for her and all of our kids.

So I found this website from British Columbia, Canada through a friend in the DS community. It's worth a look: Start With Hi.

Keep your eyes open: you will see some really neat things

2009-07-09T09:53:00.004-04:00

I just never know when to expect a new skill or ability. They sometimes appear on queue while I have a planned activity. That happened with a lot of signs after we began watching Signing Time. But gross motor skills have arrived on the spot after much gnashing of teeth and screaming and fussing. In fact we have suffered through weeks and months of painful and difficult physical therapy sessions before some gross motor skills arrived. Things like crawling, walking and climbing stairs required really painful, long, drawn-out therapy sessions and lots of practice before they emerged. In fact, they even required changing therapists and approaches to therapy.

But then, there are some things that just surprise you at unexpected moments. Tonight was one of those times. We had a swim meet at our old swimming hole: the YMCA's waterpark. We were members of the team last summer and have lots of friends there. It is a 30 minute drive from our home and less than 10 minutes into that drive we pass a county pool with a swim team. We chose to try that team out this year as that shorter drive helps me with potty training Ellie. However, we miss our friends. That made tonight's meet a real treat and we sat with our old team instead of our new team. The kids had a blast. Alex got to hang with his buddies who also swim year round with him, and Ellie got to sit with some old friends who brought a bucket of Lego. Well she kept handing me little pieces of Lego connected together. I didn't realize at first, but she was putting them together herself. I caught on to this idea after a few minutes, and then she finally tapped me on the arm so that she could show me how she does it. Watching her master this fine motor skill made my heart leap with joy! She has over-pronated her hand for all grasping and drawing and eating activities since day 1. (Imagine holding a spoon with your thumb under the handle) However, watching her hold those Lego correctly I realized she CAN hold a pencil correctly and manipulate it for a proper writing grasp. I have been doing more work with her this summer and I think it is finally paying off. Yea!!!!!

Lego Rocks! And for those of you who didn't know this: looking for little Lego pieces in a pile of Lego builds your brain's synaptic connections (still searching for the link). So keep your eyes open for two reasons: you might miss something really amazing and you can get smarter looking for Lego. :D

Spending My Life In Plan B ..... includes skin cancer? Really?

2009-07-08T09:04:00.005-04:00

What a crazy week. I knew it would be as hubby flew out of town on a business trip. And of course when hubby travels - things always go wrong. This time it was sick kids. Alex is still coughing up a lung every night. Why is it always 10 times worse when they go to bed than it is during the day???

It started out as any summer vacation week begins: getting ready to go to swim team. Summer swim team practice prep is easy: bathing suits. Check. Towels. Check. Goggles. Check. It also includes: jogging stroller. Check. Water. Check. inhaler. Check. Goldfish. Check. I run with Ellie in the jogging stroller every time Alex has an outdoor swim team practice.

We were also going to stay at the pool for free swim after practice, so I packed a lunch, sunscreen, toys and towels and suits for me and Ellie. We managed to get out the door on time and had a great time at the pool. Alex got a mild sunburn in spite of the sunscreen, so we skipped the evening swim team practice at the YMCA with his year-round team. Thus began a downward spiral to the week. We missed all the remaining swim team practices as Alex developed a fever Tuesday afternoon and a cough on Wednesday. The fever broke by mid-day Thursday, but the cough is still pestering him. Mostly at night when he is trying to sleep. When the cough developed I called the Doc to see if they could fit him in. Thankfully they saw him at 4pm and confirmed it wasn't swine flu or strep throat. He is on antibiotics, musinex and cough syrup.

On Friday morning I got a rude wake up call to USE SUNSCREEN WHENEVER I AM OUTSIDE. I was mentioning to a friend this funny red bump on my neck and how it had been there for 4 weeks and it's condition (color, shape, size, itchiness, & crustiness) reminded me of a Basal Cell Carcinoma I had removed from my neck 7 years ago. My friend said, "Well if you're concerned about it you should call your Dermatologist." Very good advice. Don't know why I didn't think of it first!

Well, I remembered to call the Dermatologist after I scheduled Alex's appointment. The Dermatologist was able to fit me in on Friday. I brought the kids, thinking it was only going to be a quick evaluation. The PA came in and after a quick look-see through a huge microscope said, "That's a keritosis, and it needs to come off." Out he went, and back in as quickly he came with a tank of liquid nitrogen. "We're going to freeze this off. It will sting a little bit, and be sore for a while." My son thought that was SO COOL! He didn't know Doctor's offices had LIQUID NITROGEN. Wow! And, yep, it stung, and was sore for a while after that, but it went away quickly. I covered it with a very cool pink Barbie band-aide. I covered the rest of me with SPF 70, and back to the pool we headed.

So what is a keritosis? It wasn't a basal cell carcinoma like I had 7 years ago. I wasn't too worried about that when I learned they don't metastisize and they are "cured" by cutting them out. The one I had removed was on the back of my neck near my hair line: not even a really visible scar. The PA told me that the keritosis was not a basal cell, but pre-cancerous. So I googled keritosis, and Google was polite; asking me "Did you really mean KERATOSIS?" Oh, yeah, thanks for the spell-check. A quick trip off to MedicineNet and I have my answer. Well, there is some debate in the medical community as to whether it IS cancer, or it is just PRE-cancerous. That's maybe good. But regardless of the debate; it is definitely pre-cancerous to squamous cell. Is that good? According to the MedicineNet website "Anywhere from 5%-10% of AKs can potentially go on to become skin cancers." I guess it's not melanoma and won't turn into melanoma, so it must be good. Right? Oh. Squamous cells are all over the body. Oh. Unlike Basal Cell Carcinoma Squamous cell cancer CAN matasticize. Not so good. Also, the website says: "While AKs may give rise to skin cancers like squamous cell carcinomas, they do not turn into melanomas. Nevertheless, it is important to keep in mind that people with AKs may be more prone to melanomas simply by having more sun damage." Great.

I feel like I'm on a new journey. I imagine skin cancer is like that bear in the woods. You go hiking, knowing that there are bear, and that they are very dangerous when encountered, but you still enjoy nature and hiking so off you go. Forewarned of course and with your wits about you and the knowledge of what to do if you encounter one. I too have knowledge of what to do to reduce my risks now. I sunscreen always: SPF 30 or higher depending on my activity and repeated hourly if I'm out that long. I wear a hat, especially when I'm running or gardening. I try to avoid spending lots of time outside at the high point of the day. Instead I run and garden in the morning or late afternoon/evening when I can. But I do have two young kids, one a swimmer. So I am not going to hide inside all summer long. I am not afraid of cancer. If it does pop out of the woods on the trail ahead, I will meet it head on. In the mean time I will enjoy the hike.

Postscript:
Since I started this two weeks ago, I found another possible keratosis on my right arm, and as I was researching last night I found maybe a few more on my right leg. Guess I have a call to make today. I was hoping they were just more mosquito bites like I got on the 4th of July. But, they aren't bug bites. Mosquito bites get big and red, and REALLY itchy. So ITCHY I scratch and scratch till they open and bleed. These are small, and sort of itchy, but don't open up like bug bites. Instead they are the same size/shape as the keratosis that he removed. So to all my swim team friends past and present: get your sunscreen on!

Astronomy Picture of the Day "APOD" - Maybe you were wondering ...

2009-06-24T08:03:00.006-04:00

why I have the website Astronomy Picture of the Day (APOD) on my sidebar. Maybe you weren't. If you were: read on. Yesteryday's pic was amazing, and funny. Remember when you used to lay down on the grass and stare at the clouds trying to make out shapes? That one's a dinosaur, there's a dolphin, and look it's spongebob! Well try that with the astronomy image from June 23, 2009. What do you see? I see . . . . . chomp, chomp, chomp, . . . . . a ginormous Pacman! Then I read about the Molecular Cloud Barnard 68 (it's scientific name). How cool, and it's only 500 light-years away. I think that's close in astronomical distances. I have a hard time wrapping my mind around astronomical distances. I can handle 900 miles from home to the in-laws in Florida. I can even comprehend 5,000 miles to Alaska. But light-years? Maybe it's the kinesthetic learner in me. I just can't grasp it.

Of course the next thing that molecular cloud brought to mind was Star Trek the Next Generation. I bet they could have a great episode with one of those. It will require the deflector dish to escape of course. Maybe the already did one. I'll have to check with the ultimate ST geek: my spouse :)

This doesn't answer your question of why is it there, hanging out on a blog about kids with special needs. Well, the great questions of the universe aren't always answered here on Earth. Looking for answers in the heavens is as human as going to the bathroom (sorry - I have a 5th grader!) Ever since I was a child I loved laying on the grass on a warm summer's eve looking up at the stars and the moon. I could sit outside and stare at the night sky for hours wondering and wandering, mentally at least. APOD gives me that moment again, without the mosquitos.

"All who wander are not lost"

2009-06-19T20:25:00.007-04:00

I'm watching "The Lord of the Rings" Trilogy with my son. It's been 30 years since I first read the stories and about 2 years since I last saw the movies. 5th graders ask great questions. The reading void has been filled now with the promise of 3 great books.

Gandalf's quote has been my mantra over the past year. I know I'm not lost, but I don't know where I'm wandering exactly. It's a disconcerting feeling - like a dream where you know where you are but it looks different somehow. And like a dream I have so little emotion about it all. It's just sort of there.

This morning I watched the sun rise as I ate my usual breakfast. The sky was the clearest blue - an unending bright blue sea of possibilities as far as the eye could see. An inspiring blue. A hopeful blue. A "future's so bright I have to wear shades" sort of blue. I almost felt something.

Then a distant echoing drumbeat. Today's trash day. Collect all the trash. Clean the fridge out. What's that smell? Really is that watermelon THAT old? One sniff and my nose hairs recoiled in fear trying to run and hide. Vacuum the downstairs. Clean out the litter box. Today is a Physical Therapy/Speech Therapy day. Pack up the car: water bottles; snacks, and diaper bag. Check. Find the coupons and the grocery list. Check. "Everybody get dressed and brush your teeth. We are leaving in 10 minutes." Amazingly we do. The impossibly blue sky was covered with hordes of white/gray clouds. Marching slowly across the expanse.

Leaving early affords me the opportunity to check out the new gas station. Saved $.10/gallon there. On a full tank of gas. Love that. Maybe a few of those clouds are marching away. I am not running late. I have the luxury of driving the speed limit and not worrying about whether I will make our appointment on time. Wow - this feels great. Liberating almost. Relaxing. Especially when Jimmy Buffet crones over the speakers. "Frankenstein had nothing on this body of mine. The villagers still come out to see. To see me. Breakin free. Cuz I've got a schoolboy heart. A novelist eye...."

It occurs to me that he is a great lyricist. I brought along a couple books about writing better. I am not a good writer. Maybe someday. But not today. I wonder if that is part of my wandering. Wandering towards better writing. What else am I wandering towards? What else is out there for me? Emotionally I feel flat. Nothing excites my passions these days. I almost felt something this morning watching that Blue Sky of Possibilities. Those "marching clouds of to do's" cover up the light and impossibilities of a crystal clear blue sky. They lead me on neither happy nor sad, just there, hanging out. Near the crystal clear blue sky of impossibilities, but never reaching it. In my happy dreams I wander past those clouds and realize that impossible sky.

Long Course Swimming . . . Long Steps Forward

2009-06-14T21:17:00.011-04:00

So, I was a summer league swimmer as a kid: starting in 8 & unders and swimming through part of high school on the high school team. But things have changed LOTS since then. I have had to learn (or re-learn) lots of new vocabulary: A, BB, B and C times, DQ (dis-qualified, not Dairy Queen), Stroke and Turn, Heat, Short Course, Long Course; to name a few. Well, it turns out short course is what I knew from my past: a 25 yard or meter pool. Long Course is what they swim in the Olympics: 50 meters for one length. That's intimidating. But cool too as you have fewer flip-turns. Today was Alex's first Long Course meet. He was nervous as he had 4 events: 100 back, 50 free, 100 breast, and 50 fly; in that order.

The coaches had to estimate what his times would be for his entry, as he had never swum long course before. Nervously he stood on the block, and jumped in for the 100 back. The starter shot the gun and the swimmers were off. This meet was a fast meet, as most (not all) of the other swimmers had A, BB and B times. Alex has just finished up his first year of swim team - he started last June with a summer team, fell in love with the sport and joined the year-round team at the Y last September. He spent the fall and winter learning the strokes and turns, and only started working on endurance and speed this spring when he moved up to a more challenging group for practice. His times have slowly and steadily improved through the year, but they are still solidly C times.

Today he took a few giant leaps forward in that long course pool. He hit the wall at the end of 100 meter backstroke 14 seconds faster than he ever did before. In that event he dropped his time to within 10 seconds of a B time. Next, he dove off the starting block (his best dive ever!) to a fastest time ever in the 50 free. He broke a minute which was a personal goal of his, and dropped his time down to 55:98; within 11 seconds of another B time! His 100 breast stroke showed a 3 second improvement and his 50 fly time stayed the same, but he looked TIRED by then :). The nice thing I noticed was that his breaststroke and butterfly stroke and kick were still together; right up to the end. No DQs! Woo Hoo!! Today he recognized the culmination of lots of little steps into one giant leap.

They grow up so fast

2009-05-29T12:12:00.004-04:00

It's hard to believe my oldest is 9, and finishing up 4th grade. He is a young 4th grader, and in the gifted program to boot. I am so glad that we didn't hold him back a year, as he is usually bored in school. Sometimes I just have to laugh at the absurdity of having two at such opposite ends of the spectrum. Alex has been asking me if I truly believe (not just want to believe) that Ellie will speak clearly, ever. "Not just what you want to believe, but seriously." If I didn't laugh, I would cry :). Well for those of you with children with disabilities you know, we all cry sometimes. But, they do bring us an immeasurable amount of joy too.

Yesterday I helped him create his own blog. It's still in the rough draft stage. I promised to help him download some images to it over the weekend. We have taken lots of pictures of his Lego creations over the years. We also have some pictures of his Lego DNA helix from his Focus (the gifted program) Independent Study. I plan to blog about that as I am the uber-proud-Momma.

Through my son's impetus, I will finally get the hang of imbedding images and video for my blog too! My children are my inspiration and pitchfork (as in they are nudging me with it!!) to keep learning and doing new things. I have intended to upload images to this blog, but just haven't gotten around to it. Now with Alex's help I should be able to take this blog to the next level.

Stay tuned, and thanks for reading!

Early Intervention - who is it really for?

2009-05-21T08:54:00.009-04:00

This started as a response to some folks complaining about how Sarah Palin holds her baby - Trig. I am not about to talk politics on this blog (again), but I will say that I find it hard to see how the family gets early intervention services for Trig when they are between Juneau and Wasilla so often, and Sarah works full time. I assume, that Todd is the primary care giver and the one present for all of those EI services. I'll tell you that the scheduling for EI is kind of tough, and of course, in Alaska, everything is far apart so there are more to the logistics, time involved for travel and such. Not to mention, I recently read an article detailing how the services in Wasilla were being cut. It makes me wonder what, if any, services Trig, and his family, are receiving? Why?

Well, this post started after reading, again, people complaining about how Sarah Palin holds Trig: like a sack of potatoes. For all of those complaining about how she is holding baby Trig, I am not about to defend Sarah. But, I will tell you that holding a child with Down Syndrome is not like holding any other typical child. All children with DS have low tone. It varies as to how low it is. Some children with other disabilities also have low tone. Tone varies from child to child. My daughter's muscles are definitely stronger now then when she was Trig's age, but for Ellie her general muscle "tone" will always be on the low side. Luckily for her (and me) it's on the high side of low.

What does this mean? It means a lot of things with regards to activities and how to teach your muscles. When you're holding a baby or child with low tone, it translates into "how well do they hold on to you". Kids with low tone do not hold back very well. That makes holding them all your job.

Here's what that really means using Trig and Sarah Palin as an example. I'm guessing Trig weighs about 20 lbs now. So, imagine taking 20lbs of cooked spaghetti noodles (the long thin kind) and putting them into a ziploc bag. Then carry that bag of cooked spaghetti as if it were your child. That's about how it feels on your arms, shoulders and back. So, it's easy to end up carrying a child with low tone like they were a sack of potatoes. I'll admit that on a few occasions I may have done that because I was sooooo tired. I work out and keep myself in good shape, just like Sarah so most of the time, I don't feel the weight of carrying a child with low tone. It's only when I'm tired that I feel it.

But, watching Sarah carry Trig that way, REPEATEDLY, is why Sarah Palin makes me sooooo mad. She tells us now, repeatedly, how she knew while pregnant that Trig has DS, and that she made the conscious CHOICE to have him. That she considered abortion, and she chose LIFE. God bless her, and I commend her for that choice. It's not an easy one to make. HOWEVER, having made that choice she has not shown publicly how she is following up on that choice with the other ones that would seemingly follow. She runs regularly and keeps herself in good shape. There is no excuse for carrying her son like a sack of potatoes. Unless you are putting ALL of your wants and desires ahead of your child's needs. A child with DS needs EI in order to have a greater chance at a lifetime of independence. Parents of a child with DS need EI in order to learn how best to parent their child. There are things you should do differently when raising a child with DS that aren't intuitive and are not always easy to find in a book. EI services help you learn these things, they help you become a better teacher to your child and address his or her unique learning style.

Children with low tone benefit greatly from early intervention. More importantly, their parents do too. So those parents can learn how to teach their children how to learn how to do things. What I mean is that children with DS learn one way. They don't learn by making mistakes. To Help them, you must help them "model' the right behavior the first time (and the first 100 times) they practice something new. This is counter-intuitive. As parents, we expect our children to learn FROM their mistakes. Children with DS learn to REPEAT their mistakes. So, as a parent, Early Intervention is extremely important in teaching my child how to learn new skills RIGHT THE FIRST TIME. That takes a lot of thinking ahead, and planning.

Here's a recent example of how this works. We were at school the other day. Ellie was trying to climb into the chair at a table in the library. She was struggling to motor-plan. That means she was struggling to determine where to put her hands, arms and legs in order to pull her body into the chair so that she could turn and sit in it properly. In order to help her learn how to do it right, I had to look at what she wanted to accomplish and figure out where she should be placing her body parts to effectively pull herself into the chair. Then I had to do two things. First, get her to let me help her place her legs and arms in the right spots. Secondly, I had to give her just enough (but not too much) of a boost up as she tried to pull herself into the chair. She got it! After I helped her plan it right she practiced it a bunch the right way with out my help.

If we had not had early intervention - I wouldn't know to do those things. I would just solve her problem for her by picking her up and putting her in the chair. Now she knows one more thing than she did before. Now she is one smaller step towards independence. I worry about Trig and children like him. When the parents don't get the Early Intervention they don't know how to keep helping their child learn as they grow. Those children are at a disadvantage for having the best chance to be independent as adults if their families don't know how to teach them independence as children.

"I want popcorn"

2009-05-08T19:03:00.004-04:00

So, at the last IEP meeting that was full of love, one of Ellie's new goals is to say sentences, or at least approximations thereof, multiple times in a day, every day for 4 weeks. WITHOUT PROMPTING. That means, I can't ask, "What do you want?" OR help her, by modeling.

So today, Ellie walks up to her Dad and says and signs, "popcorn." Dad replies, "Can you use a sentence?" Elllie, pauses and thinks for a second, "I want popcorn." Hooray! Dad makes popcorn and a smiling Ellie toddles off with her bowl of popcorn. She comes back a few minutes later with an empty bowl. She puts the empty bowl on the counter, and looks at me. I smile, and say, "Hi Ellie." She looks at me for a few seconds, and then says, "I want popcorn." WOW! Not a bit of prompting! So, I give her a high-five, and fill her bowl.

This gets repeated for a bit, and then, she even tells her Uncle Dave who has just arrived from Alaska, "I want popcorn." Wow!! She even translated it to an almost stranger. Later, she walked over to me with a DVD, Barbie in the Princess and the Pauper. I looked up and smiled. She handed me the DVD. I smiled again, and then waited. She looked at me and then a miracle happened. Ellie looked at me, and signed and said, "I want Pauper." Clearly! "I want Pauper!"

So, not only could she ask, without any prompting, for some yummy food, but also she could ask for a movie. Without ANY prompting. This is some amazing stuff. This is what I expect from a typical 4 year old. I am going to encourage this. Yes, honey, you can eat all the popcorn you ask for.

You don't often hear/read this..."I l <3 my IEP Team!"

2009-05-01T16:00:00.003-04:00

Ok, If I got the emoticon right that should read "I heart my IEP Team!"

I just came from our IEP meeting for next year's preschool (last year of preschool too). It went fabulously. I had steeled myself for a run-in with the Adminstrative Personnel. Last year they steam rollered over me on several issues. I walked out of that meeting thinking that I was not a good advocate at all for Ellie. I felt rather deflated, and doubted my own abilities as her advocate.

That was then, this is Now. About a month ago, I spoke with Ellie's teacher about the idea of having an OT evaluation. The process is:

have an OT observation
get results in a meeting
if results say eval is a good idea - agree in writing to eval
have eval
get results in a meeting
if results say ot is a good idea then agree to it in writing
then OT services begin.

This process can take MONTHS. MONTHS of not getting OT services. MONTHS of staying BEHIND. But, (heavs a big sigh) at least we are finally in this process. LAST YEAR, the OT observation results were presented to me in the IEP meeting. I was really thinking that Ellie would qualify for OT services. BOY WAS I MISTAKEN!!! So that was the first thing that blew my mind in last year's meeting.

This year, was so different. First of all, I received the OT observation report BEFORE the IEP meeting. Secondly, it RECOMMENDED OT Evaluation BEFORE the end of the 09 school year. Thirdly, the OT is rather certain that Ellie will qualify for services. I got the impression that she is going to chose the test which will show Ellie needs the services, as opposed to chosing a test where Ellie would score higher and maybe not qualify for services. We all know that "figures don't lie, but liars can figure." There's a lot of different tools for evaluating children, and where Ellie might score low on one test, she might score rather high on another. Also, she will be compared against "typical peers" in whatever test is used, as opposed to her same disabled peers. If Ellie were compared against other children her age with DS, she would score high. Very high. And probably not qualify. But against her typical peers - way low would the score be. (thanks yoda!) The OT wants to have the paperwork finished to approve OT services before the end of school this year - Holy Canoli! I love this lady!

This year's IEP was so different in another way. On the IEP (for all ages) there is a page documenting what diploma this person will be working towards. Last year they steam rollered me into an option I didn't agree with. But I finally decided that since it was Pre-K I could get over that, and deal with it next year. This year was different - they agreed (even the Administrative Rep) to checking Standard Diploma. PHEW!! I walked into the meeting prepared not to sign the IEP if they insisted on anything other than Standard Diploma. IT was the principle of hte matter. She is too young to write off. We don't know yet how far her skills and abilities will take her. I am NOT prepared to write her off before high school and say that she is not capable of earning a Standard Diploma. But thankfully the IEP team was COMPLETELY on the SAME PAGE about this. YEA!!!!!!! The ADministrative Rep told me another thing. I can keep insisiting on Standard Diploma until the Junior Year!

Another blow-my-mind moment came when the Speech Therapist recommended MORE services! Wow!!!! (surprised you didn't read this in the newspaper:"fainting mom has to be revived at meeting") I completely agreed with her, and requested, and recieved, some suggestions for home work as well.

I love this school, and these teachers and specialists. What a fantastic environment for kids with special needs. Unfortunately it is not our "home school" for elementary school. I do love our home school for Ellie's big brother (special needs on the other end - gifted). I hope it turns out to be a great place for Ellie when the time comes. I know that every year won't go as well as this one, but I am so thankful that this year I didn't have to fight. (putting away warrior mom till next year's IEP meeting - Kindergarten)

When I wasn't looking, she took more steps

2009-04-26T20:41:00.003-04:00

Here is Ellie showing signs of regressing by staying in my arms for most of my Grandmother's 90th birthday party. She has a big smile on her face because she loves to pose for the camera, and she loves people. Large crowds make her nervous, she's been in hotels, changed 4 time zones and frankly doesn't know where she'll be when she next wakes up.

Every time we travel or have company: two things that throw Ellie's world out of sync, her behavior regresses. Typically she stops sitting at the table in her own chair for meals. She will only eat on my lap. This gets old really quick, and causes my legs to fall asleep! The other thing she stops doing well is sleeping. Staying up late, or waking often in the night are typical behavior patterns when we travel and have company. I love coffee, so I survive with a little extra Joe. She goes back to sleeping peacefully through the night after a week or so.

Of course, I forget this little tid bit each time we have company. It's more obvious to me when we all head out of Dodge, than it is when we stay put and just add people. For instance, the last time Grammy and Pop Pops visited, Ellie spent the weekend on my lap for every meal, stayed up late, woke up often and early every day.

But, this past weekend we had a HUGE breakthrough. Ellie's Uncle Dave visited from Alaska. She hasn't seen him in 6 months. She not only slept her regular schedule, sat in her chair for every meal, but also started talking more!! Woo Hoo!! Go Ellie! That was the weekend of "I Want Popcorn" and "I want Pauper". I am so proud of my little girl. She continues to amaze me.

One Giant Leap for Ellie Kind

2009-04-25T20:34:00.003-04:00

Holy Canoli. I was banking on a whole 'nother year of Ellie being afraid to step across and down the threshold of our front door to the porch outside. It's a pretty big leap for a tiny girl who has low muscle tone and rather weak core muscles.

Spring blooms eternal though in my garden, and it beckons to young and old alike. Last weekend I was more than a little surprised to see my cheerful little girl staring back at me from the other side of my storm door. The cat was quite pleased with his new best friend who helped him escape.

Now my dear husband has a new project on his to-do list: alarms and locks for the doors.

Make New Friends, But Keep the Old.....

2009-04-25T19:13:00.012-04:00

One is silver, and the other Gold.

I remember this saying from when I was a child, and my best friend moved away. My mom tried to comfort me with this pithy saying. It didn't really work, but I did work at making new friends to fill the hole in my heart left by my first best friend. Making new friends has been a big part of my life as I've moved around many times as an adult. However, thanks to the wonders of technology I've had the pleasure of reconnecting with my "old" friends from days gone past: childhood and high school. What a sweet pleasure. Like savoring a delicious morsel of chocolate, or a good wine, visiting online and even in person with friends I've known since High School, Jr. High, and even Elementary School has been an incredible treat.

As I said in my last post, I love technology. Through the wonders of Facebook and email I have reconnected with a whole host of old friends, and kept in touch with new friends that I don't see anymore due to moving across the globe (5,000 miles from Alaska to VA). Each week Facebook reminds me that I went to high school with these other wonderful people, and wouldn't I like to be friends with them? Of course I would. The last time I was in touch with many of these friends we were like chrysalis: we had a shell around us to protect our developing persona from the harsh realities of life. Graduation was the chance for our butterfly form to escape from that shell. What sort of butterflies would we become? Would we be the same as adults that we were as children? Would life's adventures change us, and if so, how? What would life be like as we stretched our wings and took flight for the first time?

It's years later, and our wings are a little tired now. We have stories to tell, and some of us have war stories too. Some friends have spent time in Desert Storm, and some in the Iraq War, and a few in both. Some have been to Afghanistan, some have served in the Peace Corps. Some have become Doctors or nurses, lawyers or judges, or fabulous interior decorators to the stars. Some of us are married, some of us are married again. Many, but not all, of us have children. A few are grandparents. Some of us have moved around the country, and some have never left home. Several are openly gay. I am very proud to call them ALL my friends.

When we were in High School it was very clique-y. If you saw The Breakfast Club, you know what I mean. But those years apart as we spread our wings and made our own ways into the world have erased those stereotypes. We are all friends now with the common ties that bind of our collective soul of high school and thankfully time, and maybe a little booze, has erased some of those painful memories, like scars which fade with time. The shared joys and pains of adulthood bind us now.

Technology is Good

2009-04-08T11:06:00.003-04:00

I finally got on Face book - about a month ago. It's been a neat trip back in time. I have started to find old High School Friends. One of the most amazing things happened too. I found an old friend, she's been married as long as me, her child is in 4th grade (like my son), her husband works in the same town as mine, and we live 8 miles apart. Which is about 300 miles from our high school. Go figure!

She's off to a vacation destination for spring break. I am off to "home" and visiting with 4 other friends I reconnected with on Facebook. We'll catch up for coffee after spring break. I love technology!

Favorite Color is .......

2009-04-06T10:12:00.004-04:00

Ellie has told me what her favorite color is! Since mine is pink, I always dress her in that, but I did buy a few purple shirts and capri combos for spring. Well, I dressed her in that yesterday and she got SO EXCITED and tried to say "Purple" while she signed it, and signed each peice of clothing too. So, purple shirt, purple pants (they are a purple/turq/brown plaid) they sound awful but they are cute if you don't ask her brother's opinion. And then she got really excited by the purple socks!

I was guessing this might be her fav. She has requested and repeatedly watched Signing Times My Favorite Things. It has a great song "Do You Know the Colors of the Rainbow?" Ellie signs to the song and all the colors. Till recently she only tried to say blue. Over the last two weeks she has been trying to say purple and with a big smile on her face too! So, the verdict is in. Favorite Color: Purple!

Not a Joke

2009-03-29T08:10:00.023-04:00

(This post was supposed to have the Date April 1 - guess blogger is having an April Fool's Joke on me)

Happy April Fool's Day. This is not a joke though. On March 27, 2009 an elected official in his official capacity - that is through a regular communication with his constituents - violated the First Amendment Rights of a private citizen with whom he disagrees politically. More importantly - that citizen called Doogan on the carpet for treating his constituents so rudely and he/she used Doogan's own words. No paraphrasing, no embellishment, the blogger just used Doogan's own stinking words.

I try to keep this blog about non-political topics, but when First Amendment Rights are violated - I get incensed. No. I get ANGRY! As an American citizen, I cherish my Rights. I thank the men and women in uniform who are willing to risk their lives to protect my freedoms. And I mean this. As much as I completely disagree with his point of view (completely and vicerally) - I will defend to the end Rush Limbaugh's right to spew his filth over the airwaves.

So today's post is about my favorite blog, blogger, and blogging community: The Mudflats, written by AK Muckraker and supported by thousands of anonymoose, pj clad, coffee drinking (or your beverage of choice) Mud Puppies all over the globe (just look at the Flats' webmap on his/her sidebar). AK Muckraker, commonly abbreviated to AKM, is a psuedonym. Writing under a psuedonym is protected by the Constitution. See Supreme Court, 1995, McIntyre v. Ohio Elections Commission, which says (in part):

Protections for anonymous speech are vital to democratic discourse. Allowing dissenters to shield their identities frees them to express critical, minority views . . . Anonymity is a shield from the tyranny of the majority. It thus exemplifies the purpose of the Bill of Rights, and of the first amendment in particular: to protect unpopular individuals from retaliation.

I love the Constitution, and I have at least 4 copies in my house - yes I am a poli sci geek. I have read (and own copies of) the well-known Common Sense (written anonymously by Thomas Paine) and his lesser known Rights of Man, The Crisis, and The Age of Reason. The Federalist Papers (written anonymously, under the psuedonym Publius, by John Jay, James Madison, and Alexander Hamilton) were crucial to turning public opinion in New York State where ratification of the Constitution was questionable. Anonymous speech is vital to a healthy democracy.

The scariest thing to me about this outing is that it was done by an elected official in the capacity for which he was elected to serve. And then, the previously anonymous commentator at the local newspaper (The Anchorage Daily News columnist known locally as The Alaska Ear) condones this forcible outing. And in reporting the news, the news paper continues the forcible outing by posting the name of the anonymoose blogger. Holy Canoli! What The Fusillli?? To make an analogy, we have the bully of the middle school who has decided he doesn't like how the geek (who always breaks the curve because he/she actually studies and knows all the facts and does his/her homework) has made him look bad USING HIS OWN WORDS. So he's decided to make an object lesson out of the geek. Thankfully our geek has some real intestinal fortitude and didn't back down. Nay, our geek came back stronger than ever!

That's all I'm going to say right now, because I start fuming and then I have to start counting to 100. For those of you who are as upset as I am - karma is a good thing. This is what urban dictionary has to say about Doogan.

One Big Step Today

2009-03-26T21:55:00.004-04:00

On the gross motor evaluations is that question, "Can your child kick a ball?" This is one of those items on a long list of items, that I logically know Ellie will acheive, but emotionally I wonder, "When?"

Today I got that answer. As she walked home from the bus stop she signed "ball". I reminded her that it was raining. "We can play with the red ball inside." A big smile, and a signed "yes" was Ellie's reply. I thought to myself, "Life is good when we can have some two-way communication," and I said a little thank-you prayer to Rachel Coleman and the Signing Time crew. As soon as we got inside Ellie made a bee-line for the red ball. This is one of our many therapy balls that are ginormous. This one is slightly smaller, with a diameter of about 18 inches. It's a great size for kids.

Ellie giggled and tossed the ball in front of her as she roamed around the house. Then she came over to me in the kitchen with her red ball. A big grin spread across her face. I asked her if she wanted me to play ball with her. That big grin grew even bigger.

We headed into the living room where there is some space to play back and forth with a ball. Thankfully I haven't decorated yet. The living room is no longer decorated in early Playskool. Right now we are 'between styles', or perhaps it's early "Gregorian Monk." In any event, there's really nothing breakable. So, that means, time to set a bad precedent! I thought we were going to roll the ball back and forth like we've done so many other times. But, Ellie had a new trick up her sleeve. She kicked the ball back to me. I mean really kicked: stood and balanced on one leg, wound up the other leg and made great contact with the ball sending it OFF! And she giggled that belly rolling contagious, I-don't-care-how-grumpy-you-are-you-can't-help-but-laugh-along giggle!

I can't think of a better way to spend a rainy afternoon. Now we have one more item checked off that end-less list of "she'll-do-it-in-her-own-time-milestones".

Signs of Spring

2009-03-21T16:22:00.002-04:00

Wow - 13 robins all at once, eating the worms in my yard. They sure do love the drain field :) Wonder if they grow larger from eating over there???

We've had all sorts of wonderful winter birds with the Christmas additions of two bird feeders. Now we have the beginnings of our spring birds.

Happy Vernal Equinox!

To Whom it may concern

2009-03-11T21:43:00.002-04:00

There is one area that I could be updating and that is the open letter to whoever would be entrusted with caring for the kids. In that letter I should describe what Ellie's days are like. Well, and her nights too. How do we comfort her when she is sad. What are her favorite foods, movies, books, games, activities, songs, toys, friends, stuffed animals and of course, don't ever forget a blankie.

We sign a lot with her, and so when I give her a bath I sing some of her favorite songs while I wash her hair. Believe it or not it helps us get through hair washing without tears. I did write this letter about 2 years ago, but I think it needs updating. We were still in Alaska and ellie hadn't learned how to walk yet, let alone learn over 300 signs. She wasn't standing up for a "shower" when she gets her hair washed, but playing in bubble bath for the first half of the bath. She wasn't going potty before her bath back then.

I started this letter while Ellie was in her combo PT/Speech therapy yesterday. This is going to be a LLLLOOOOONNNNGGGGG letter. Tomorrow I need to buy a binder, lots of pretty colored tabs, and more ink and paper for the printer.

Estate Planning - Or should we call it Procrastination Planning?

2009-02-22T16:48:00.008-05:00

One of the first ten or twenty things we learned about after discovering Ellie has Down Syndrome was that when we re-write our will we need to create a Special Needs Trust for her. It seems that people with disabilities who are going to rely on Social Security and Medicaid and other state services are not allowed to have much, if any, personal wealth. By that I mean something like less than $2,000. But what exactly is a Special Needs Trust, and how do we go about writing one? If I remember correctly (mommy brain says, "don't quote me") $2,000 was the magic number when we applied for Medicaid in Alaska, and Virginia. Approved in AK, but denied in VA. That's another blog, ugh.

Back to Special Needs Trusts. I still don't know the exact answer to those questions. What I do know is that when we rewrite our will, which we've been putting off for 4 years now, we shouldn't name Ellie as a direct beneficiary. Nor should our family name her as a direct beneficiary. Once we have that Special Needs Trust we can have that Trust be our beneficiary. We can use trust money to provide various things for Ellie. I'm not sure exactly what. More things I have to find out.

Since it's so complicated and deals with the issue of what to do if we die early, I tend to put this off. That's not the mature way to handle things, but it's my coping mechanism.

Weird Conjunction of Events

2009-02-20T20:14:00.002-05:00

So, I'm in Spinning Class tonight. Alex is at swim team, and Ellie is at her favorite place - the nursery at the YMCA. And I'm finally getting a workout - yippee! The Friday instructor plays an eclectic mix of music. In the middle of the class Kenney Chesney started belting out "I Go Back".

My own Time machine

2009-02-20T14:21:00.003-05:00

If Doc Brown can make one from a DeLorean, I can make one from a Honda Odyssey. :) It's an easy recipe: Take one Honda Odyssey, and just add Ipod!

The kids like to watch a movie on the way to swim team. It's a 25-30 minute ride, each way, and usually the only tv time my son gets during the week days. So, I eat those "I'll Never Let My Kids Watch TV IN The CAR!!!!" words I used to utter. But, I get tired of hearing Tom and Jerry cartoons (their latest craze) over, and over, and over, and over, ad nauseum.

Now, I hope this isn't a rule breaker, but if it is, I just hope I don't get caught. I plug my Ipod in a toss one or two ear buds in I'm instantly transported. It's amazing how a song can take you back. The B-52's "Roam" instantly transported me to Lancaster County countryside circa 1990. I had graduated from college and had NO idea what to do with my life. I knew I didn't want to stay in Lancaster, but I was unsure of breaking out on my own. I would drive around the county, through corn and tobacco fields, past Amish and Mennonite farms still operating as they had for 200 years - no electricity, no indoor plumbing. I would search for a Turkey Hill and get some of their great iced tea, then drive on exploring the countryside.

I wondered what my future had in store for me? What do I have to offer the world, and what does it have to offer me? Where would I be in 20 years? I know the answers to some of those questions now. And those answers, especially the two sitting in the back seat, put a big smile on my face. I love my time machine!

Private Therapy vs. School Therapy vs. No Therapy

2009-02-18T22:18:00.007-05:00

What to do? In Ellie's short 4 years of life, for a whole variety of reasons we've had our time in each camp. All in all I think private therapy is fantastic if you can afford it. For us - we do a combo treatment of PT which Ellie usually hates with Speech which she usually loves. This works well because the Speech Therapist distracts Ellie from the thing she hates that the Physical Therapist is insisting that she try to do "just one more time". I hear giggles and laughter down the hall. If it were just PT I can't imagine the fits she might throw.

The School District seems to think that Ellie doesn't need PT. According to their records she can walk down the hall, navigate her classroom and the playground so she's fine. Of course she can't manage the steps of the bus on her own, she can't balance on one foot, she only just started kicking a ball this week (Yippee), and she can't run, hop, skip, jump or navigate steep or rough terrain on her own. The list could go on, but I'll spare you. All of these are things that a 4 year should be able to do. So she receives no PT through the school. We are fortunate to have good insurance and we can manage the weekly co-pays. As a co-treat there is only one co-pay, so it does save us some money and gives us more bang for the buck as we only get 75 total visits covered a year.

Speech is the only therapy she receives at school. Of course her speech is so delayed I should hope so! She also receives the private Speech, and I am grateful for it. She is not so thrilled with the school therapist who focuses on oral motor, but she loves the private one. I am hearing an improvement (albeit slight) in her articulation. She talks a tin ear off you - but so much of it sounds the same that you have no idea what she said. We continue to use the sign language and have added so many new signs - including a push to use numbers and letters. It's amazing to see that she is learning to count and have letter recognition. I thank God for Sign Language every day! Our sign language has all be done at home. We were introduced to it through the Early Intervention group, but a friend introduced us to the program we use and love: Signing Time.

We had been on a waitlist for private Occupational Therapy for 9 months. We just got off the waitlist, but due to a rise in co-pays and a concern I have that we would max out our yearly limit of 75 sessions total I opted for every other week on the OT. We saw so much improvement over those 9 months without therapy that I am not totally convinced that Ellie needs or will benefit greatly from OT. She does have internal rotation of her wrists, but she does compesate well. She gets very defensive when I try to do hand-over-hand assistance. I keep trying :) and sometimes she allows my help. I don't know that there will be a much faster learning curve with therapy in this arena. She does need extra assistance in many self-care areas - of course the school doesn't recognize them - getting dressed isn't something you should be doing at school. So, perhaps we will keep Private OT, perhaps we will end it. Magic 8-ball says too soon to tell.

In my experience private therapy can be a great addition to what ever services the school does provide. but there 's a caveat. You have to look at the whole child and recognize that your child changes. What worked at the age of 2 doesn't work at 4 years old. Re-evaluate periodically and keep the lines of communication open with the therapists. We have done that when Ellie wasn't "clicking" with a therapist: we went through 3 Physical Therapists in 2 years in Alaska till we found the right one.

Bring Out Yer Dead!

2009-02-11T15:37:00.003-05:00

Chicken Pox? But, I'm not dead yet!

So, we are resorting to the age-old custom of quarantine. Ugh. It's only Chicken Pox. When I was a kid, they sent you to school. Every kid should experience the calomine-lotion-crust-covered-itch-fest that is Chicken Pox. It's a rite of passage.

But not in this kinder-gentler-lawyer-driven world in which we now live. I was going to take my possibly (we still aren't certain it's Chicken) pox covered preschool daughter to an awards assembly. Her healthy big brother was receiving an award at his school today. He was so thrilled! He was crushed when yesterday I said, "Maybe I shouldn't go. Since Ellie might have Chicken Pox." His face fell to the ground. So, I lessened it by adding, "Well maybe I'll come. I could put Ellie in the stroller so she's not touching everything and everyone. Unless the Doctor calls and tells me otherwise." He perked up quickly. Getting sushi for dinner helped too.

So, Guess what? Today, Ellie and I were all ready to go. Took showers, got dressed up nice and pretty. We were going to drop books at the library and pick up some apples and things at the store, then head over to the school. Camera battery was all charged and everything was set.

You see, Ellie is not looking or acting sick. Well, except for the 2 dozen red dots all over her face. They aren't really anywhere else - excepting for one on her wrist, one on her collar bone, and a few in the diaper area. Ok, I guess there are a few more than yesterday's 1/2 dozen on her face. Hghmmmmmmmm......

My Doctor's nurse called an hour before we were going to leave. "How's Ellie?" I explained how she seems fine excepting for these little dots. "What did Doctor .... tell you yesterday?" I reiterated that we were staying home from school. My Doctor's office called me back within 10 minutes of my explaining how Ellie looked and felt (she is happy as a clam, eating well, playing, etc.) and that we were thinking of going to the Awards Assembly. "No, no, no.... " siad the Nurse. "Dr. .... said it's HGHLY contaigious. In a well ventilated building she could be on the first floor, and some one on the third floor could get her Chicken Pox."

Wow.

So, I hastily penned a note to my son's teacher. "Please tell him how SORRY I am!" And I sit, and eat chocolate, and blog. But not in my pajamas. We are all dressed up and nowhere to go.

In Memory of Dr. Cohen

2009-02-08T20:41:00.002-05:00

I had the great pleasure of attending a lecture by Dr. Cohen last year. He was the keynote speaker at the Down Syndrome Association of Northern Virginia's annual meeting. Thankfully I made the trip with Ellie and attended the meeting. He spoke with honesty and humour about topics that can be uncomfortable for many of us: late potty training, eating and chewing issues, bowel and digestion issues, hearing and vision, sex education. The list went on and the questions didn't stop. Dr. Cohen kept up - patiently answering our questions while the littlest ones played in the background.

It was with great sadness today that I learned of Dr. Cohen's death. The community of families of people with Down Syndrome have lost a wonderful person. My condolences go out to his family and friends. He will be missed.

Entering the Internet is like...

2009-01-12T21:08:00.010-05:00

looking at your reflection in a mirror reflecting a mirror. The reflections go on and on and on, until you get lost in the reflection.

Tonight I had the ?pleasure? of helping my son with his language arts homework. The dreaded simile/metaphor assignment. I recall these from my own childhood with the same dread and loathing as getting a cavity filled. The beautiful thing for this generation of parents is that we don't have to remember all of this esoterica. We can google it. So, off to to wikihow and WikiAnswers to find examples of similes and metaphors.

Metaphors and similes abound on the internet like dandelions on a roadside field. But all the examples in the world don't help when you are looking for the "right answer". How do you explain that there is no "right" answer to the simile/metaphor when writing a simile or metaphor? My son was completely stressing about this, and I was recalling my own child hood again.

Maybe it's all the wine. Maybe it's the age. Maybe it's all the crazy music I listened to as a college student that rewired my brain. Certainly it rewired my hearing - what did you say? In any event it has helped me to reconnect different pathways in my memory recently. As I watched my son struggling and stressing, I thought of the Infinity Mirror reflecting itself into eternity. Suddenly the mirror cracked - I realized it was the "right answer" problem.

"Are you lookng for the "right answer?" I asked with a little puzzled brow. Frustrated, he nodded to me. "Unlike Math facts, Science facts and even Social Studies facts, Language Arts doesn't always have a "right answer" you can study for a test. Language arts is different and more creative than the other subjects. With Similes and Metaphors there is a "right pattern" and as long as your creativity fits that pattern you get to have all the fun."

"But Mom, how do you know how Pablo smiles in the sentence "Pablo smiles when he sees Carlos and the girls?" A knowing smile warms my face as I reply, "Your simile will answer the how. You, the writer, get to decide, is it a happy smile or a Cruella De Ville smile?"

For a moment I wondered, is this mirror going to continue to repeat itself? Can I come up with another way of explaining this that will "click"? But my son looked out from the mirror and went, 'Ah-HA! I get it." I smiled and realized that maybe, just maybe, with age does come wisdom. Or is that with wine?

I tried to find the "right' image to accompany this blog but it's as elusive as the beginning or end of that infinity mirror. In my searches I have found lots of neat art from M.C. Escher and Manet.

Poetry for the. 21st century man. old is new - haiku.....

2009-01-11T22:42:00.008-05:00

Many moons ago I started following this very cool science blog "Star Stryder". She Twitters, and of course they are on her blog side-panel. I noticed some time in the summer that sometimes they were in haiku. "How clever", I thought. She blogged about her haiku twitters.

It inspired me, and occasionally I've twittered in haiku. It's a great, and quick mental exercise. As a stay-at-home mom, I feel sometimes that my brain muscles are turning to mush. Talking to children all day, cooking, cleaning, paying the bills, laundry - these things don't tax my mind. At. All.

Blogging helps work that mushy brain, but it's like a power walk for a runner. The power walk is better than nothing but it sure isn't a good run. It just makes you want to work out more. A twaiku is like doing speed drills. You don't have to do a long workout, but the short bursts really pack a punch. In these fast-paced days with super-long to-do lists, we have a hard time fitting in a physical workout let alone a mental one. The twaiku may be just the thing to squeeze into your busy day.

I must admit, I haven't been twittering much these days. I lost my password somewhere in web and dust covered innards of my mental filing cabinet. Perhaps I saved it somewhere in a password file, but searching for it doesn't even making my to-do list these days. (more blogging on my organizational program for 09 in a future blog). For now, my twittering days have passed. After all the pre-election blog o sphere reading and 7/24 news feed, I went into computer detox. I do have two of my twai-kus that didn't disappear yet.

organization. two steps forward one step back. slow steady progress

cool crisp fluttering - red, yellow, gold, orange, brown - quiet peaceful woods.

I'm so glad as the top one reminds me why I'm not looking for that password, and the bottom one reminds me of the most beautiful Fall I have seen in many years. The best part: I didn't have to drive anywhere to see it, and it will grace my back yard every year. If I stay steady on the first twaiku I'll have time to enjoy the second one when it comes around again.

Down Syndrome is not a "One-Size-Fits-All" Tag

2009-01-11T21:20:00.004-05:00

Some days I don't have to ask Alex, "How was your day at school dear?" These days are not frequent. My uber-typical son doesn't give me an impromptu discourse on the behavior and relationships of his classmates. No, I get the ad-libbed, extemporaneous monolog on the latest Xbox game and his various Lego weapons of mass destruction instead.

When I do get an unprompted discourse on his day at school I stop. I listen. I pray. I hope. Maybe. I. Have. The. Right. Response.

It happened when we were getting in the car to run errands. Maybe we were heading to swim team. I just remember he mentioned his friend "D" who had been over to play the week before. Mom, 'D' said that 'A' has her own language, and no one in class understands her. I don't think she has any friends, and I really hope that Ellie can talk clearly so that everyone can understand her. I don't want her to be lonely, and not have any friends in school." quick breath. "Mom, do you think that will happen to Ellie? I really hope she can learn to speak so people can understand her, and not have her own language that no one gets." Images are flashing across my mind like a dvd on fast forward. At the same time, these two big blue saucers of pain and worry are peering up at me and pleading with me to make his fears go away. Of course he has no idea that his words have sliced into the core of my very soul like a well-sharpened kitchen knife. What a clean cut. Take a deep breath. Say a quick prayer. Let it out.

The images are helping me. I'm remembering the Fall Awards Assembly. I arrived early. Let me write that again. I arrived EARLY. That doesn't happen. much. at. all. Just ask Alex. I got to sit in the front row. Right behind where Alex's class sat down. After all the classes arrived and were seated, then 'A' came in, and found her class. Alex's class. Their class is the Inclusion class for 4th grade. It's a potpouri of typical kids, ESL kids, Special Needs kids, and Gifted kids. It's taught by a Fairy GodMother - Mrs. T has just the right touch for each and every one of her precious charges. Talk about a gifted teacher!!

As I sit in the Awards Assembly I watch 'A' who you may have guessed by now has Down Syndrome. She walks across the room with that typical DS gait - forward leaning, lumbering, looks like she just might fall over any second. She is very excited to join her class, and as she heads their way, I hold my breath. I realize that my eyes are watering. I am worried for her. Does anyone want her to sit beside them? Or are they all hoping she'll sit some where else? Memories of my own childhood and the embarassment of being with the "labeled" kids is haunting me. As quickly as that gray cloud arrived, it is lifted. The sun is shining. It's a beautiful day. The most wonderful scene is right in front of me. A sweet classmate motions to 'A' to come sit by her. The little girl leans over and whispers to 'A'. She gives 'A' a quick hug, and fixes her hair. They chat for a few minutes with smiles on their faces and then sit quietly and closely as they watch the Assembly, clapping vigorously for all the awardees. 'A' receives an award and everyone claps for her. She heads up to the stage and smiles.

I give Alex a big smile. "Just because Ellie and 'A' both have DS doesn't mean that they are the same. Each person with DS is just as much an individual as any person without DS. Remember that Ellie is signing so very much and her speech is improving every day. Her future isn't written in stone, so we'll just have to wait and see. She is such a friendly, happy person I'm sure she'll have lots of friends as she grows up."

"You're probably right, Mom." The blue eyes look hopeful now.

Our Kids Grow Up So Fast

2008-12-28T22:07:00.003-05:00

Dateline August, 2008
Charlottesville, VA
Part 1

When do our kids grow up so fast? This year Alex figured it all out. I mean, ALL. First, he comes to me with the Tooth Fairy. Then Santa and the Easter Bunny. The icing on the cake of growing up was to hit me square in the face on a sunny summer afternoon in Ruby Tuesday’s in Charlottesville VA. We headed out there for Ellie’s pre-op visit for her upcoming sleep study. That’s a whole ‘nother story. Stay tuned.

So, we are sitting down to eat a late lunch after our visit to University of Virginia’s Hospital. “So Mom, if in 2nd grade we learned how to make salmon babies when we went on that field trip. You know, they showed us how the male salmon swims over to get his white milky stuff near the female’s eggs which she lays in a safe area. And then they wiggle their tails around and swish it all up and they get together and a baby salmon grows?” Mom is swallowing hard, and starting to look for the well worn parent manual in her brain. It’s got some coffee stains on it, and the binding is broken now, but the pages are usually full of up-to-date information. Usually. Sometimes they are blank. Like Today. Rats.

“So Mom, are you listening?” Mom smiles brightly, “Yes, dear I’m listening.” Shifting nervously, and looking around to see just how crowded this restaurant is right now. Good, no one is sitting near us. All of the sudden a really late lunch is just perfect, I don't mind the empty pit in my stomach!
"So, Mom, if that’s how a baby salmon is made. How EXACTLY, does a human man get his white milky stuff to be near enough to a human female’s egg to make a human baby?”
THUNK! After I pick my jaw up off the table, I furiously look for that manual. Where could it be? “You don’t want to answer this question do you Mom?”

“No, Dear. I think that question, since you thought it out so thoroughly and asked it so well, deserves an answer. I just wasn’t quite prepared for it. I also wasn’t prepared to answer it here, in a public restaurant.”

Alex’s face falls. “But dear, since it’s not crowded, and you deserve an answer...I’ll do my best. I’ll answer just what you ask, and not go into too much detail. I don’t want to gross you out at lunch.” Too bad we live so far away, I could really use a drink with this lunch!

I think therefore I run

2008-11-20T14:49:00.003-05:00

My small steps in running have grown over the past few months. I started out in March only being able to run 1 mile, and slow at that (12 minutes). Today I finished 7 miles at a 9:45 minute/mile pace with lots of hills and a head wind for the second 1/2 (it was a 3.5 mile road - I ran out and back). I set my sights on a goal - the Blue and Gray 1/2 marathon. I try to have patience and persistence. I also keep track of my progress. Each time I run, I log it. And when I couldn't run for 16 looooonnnnnnggggg days while some stitches healed, and I got a cold, and it became a sinus infection, oy vey! Well, I ate a lot of chocolate and forgave myself :). Then I got back out there and started running again, as soon as I felt good. I've been back at it for about 2 weeks and I am amazed that I didn't lose any conditioning. Woo hoo!

So, for those of you who are feeling disheartened by the enormity of whatever faces you. Try to keep it simple. Break the enormity into small steps. Then, chin down. Dive into the work. Track it. Be patient. Be persistent. Don't get ahead of yourself. Stick to the small steps you broke out. Then wait awhile. Really! Imagine you're making a loaf of bread and it needs time to rise. Did you ever bake a loaf of bread from scratch? It really does take time to rise. So, wait awhile. Keep at your planned small steps. Wait awhile longer. Then, look back at where you started. Look at where you are. You will be amazed at what those small steps can accomplish.

Have a great day, and thanks for stopping by.

Obama 08 Hooray!

2008-11-05T09:05:00.000-05:00

Change - Seasons - Always
Growing, Dying, Rebirth - Time
Heals All Wounds. Rejoice!

12 Steps to vote Against McCain/Palin

2008-10-30T13:45:00.011-04:00

Ok. So, I've never done a 12 step program before. I did quite a 2pack a day smoking habit 18 years ago. But I just slowly cut back till I couldn't any more and then one day I just didn't buy anymore cigarettes. I ate a lot of chocolate, and apparently, I was really grumping, moody, and down right bit&%y! Go figure.

I'm going to just lay this out on the line in 12 reasons - it may be hard to limit it to 12, but I'll try.

McCain and Palin are against protecting women's rights. And this has nothing to do with abortion. In fact in this issue I can list an additional 5 ways they are against women's equal rights and healthcare without mentioning that a-word. You want to see me try? Really? Ok. Here goes. I have this friend named Cecille. And she really cares about women's healthcare. Alot. Her mom was Ann Richards, the former Republican governor of Texas. And Cecile was kind enough to make this list available to me and lots of my friends. I've cut and pasted some of it:

John McCain opposes equal pay legislation, saying it wouldn’t do "anything to help the rights of women."
John McCain opposes requiring health care plans to cover birth control.
John McCain opposes comprehensive, medically accurate sex education.
John McCain opposes restoring family planning services for low-income women.
John McCain said he was "stumped" when asked whether contraceptives help stop the spread of HIV. (Thank you to Cecile Richards and Planned Parenthood - my primary health care provider when I had no insurance).

Socialim. Ok. So I have a Bachelor's of Arts in Political Science from Penn State U. Which may explain why I get so freakin' frustrated with Sarah Palin, and John McCain for picking her. I'm a Political Science geek and I'll admit that. But let's get back to Socialism. For those of you who aren't poli sci geeks I'll forgive you and help you out here. From Wikipedia a simple definition of socialism: "refers to a broad set of economic theories of social organization advocating state or collective ownership and administration of the means of production and distribution of goods, and the creation of an egalitarian society." So, if you look at all the states in America, do you ever find an example of socialism? Anyone? Anyone? Bueller? Bueller? Let's see. I lived in Alaska for 4 1/2 years. Yeah. I think everyone in my family received a dividend check, even the baby! For what? What's that? Oh, we were citizens of the state of Alaska, which means we were all collectively, owners of the oil resources of the state of Alaska. Collective ownership? Socialism? Hmmm. Sarah Palin is the governor of this great socialist state. And this year, she sent an EXTRA check to each and every citizen-owner. Ummm. Can you say "hypocrite" boys and girls? Yes, that's "hip - o - crit". Or, maybe, we'll give her the benefit of the doubt. Maybe she really didn't know what socialism means. Hmm. so I want to vote for a leader of my country who knows less than I do, better yet, less than my 9 year old son does, of general political concepts. How can she be respected on the world stage with other world leaders?
On to the next topic before I need some Tums. Ayers, Kahlid Rashidi. So, I'm going to say what my mom used to tell me, "When you point your finger, 4 are pointing back at you." So, John McCain's campaign has been pointing it's finger at Barack Obama for this "relationship of palling around with Bill Ayers, that terrorist, and Rashidi who is so vehemently opposed to Israel." It was coffee and donuts night. Puh-lease! Let's look at John McCain's relationship wtih Kahlid Rashidi. McCain sat on the board of a conservative Republican group that gave almost 1/2 a million dollars ot Rashidi! I can't amke this stuff up folks!!
Constitutional Law 101. part 1. yes, as I said, I'm a poli sci geek. So I have 3 copies of the constitution, not including those that are imbeded in poli sci books. I think everyone should have a copy and read it. But that's me. I do think that every Federal government official should have a copy, read it regularly, and maybe even read a little bit about what Constitutional Scholars think about it too. Duties of the Vice President. What does the Constitution have to say????? She was asked 4 times, and got it wrong. The Veep is to wait and be ready to take over as President in the awful event that the President is no longer available to fulfill his office ("through death, resignation, removal from office, or inability to perform the duties of his office"). Secondly, the Veep also has a role in the Senate - but this is where she really got it wrong. Just ask Lyndon B. Johnson, who was a senator, then became Veep. He attended a Senator's luncheon as Veep and was shown the door! Article 1, Section 3, "The Vice President of the United States shall be the President of the Senate, but shall have no Vote, unless they be equally divided." That's it. No interpretation, Governor. No mixing it up with the Senators to create legislation. Let's keep with the Framer's Intent. That is how you read the Constitution, isn't it???
Constitutional Law 101. part 2. First Amendment protections. As Keith Oberlann just said, "Read the Constitution Governor. It's FUN!" Since she didn't, I'll reprint the 1st amendment for you, "Amendment 1. Congress shall make no law respecting an establishment if religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press, or the right of the people peaceably to assemble, and to petition the Government for a redress of grievances." What this means is that Government can't block the press's right to speak/write, not the other way around.
Constitutional Law 101. Part 3. Federalism vs. States Rights. Ok. So if you're going to throw around poli sci geek words from Poli Sci 101 you should know what they mean. So, Sarah Palin says in an interview that she is a Federalist. She then goes on to explain that she means that some things need to be decided by the states. Well, if you are a follower of George Bush and his policies, then I guess you are a new Bushie Federalist. Because W. went ahead and in his total dunceness turned the definition of Federalism inside out (which ticks me off but that's another story). But, to sit there and say that you are a Federalist in the tradition of George W. Bush means that you are lock-step with him philosophically - ergo we can expect 4 more of the last 8 years. Unless you are part of the ubber-rich that doesn't sound so good.
healthcare. John McCain's Economics Advisor Douglas Holtz-Eakin says "why would young healthy people leave their healthcare provider when their credit won't buy them anything better." If young healthy kids can't do better on the free market, how are the rest of us going to survive? Even his top economics advisor knows that his healthcare plan stinks. enough said.
Not understanding programs that are designed to help people with special needs, and ridiculing them at a rally. Sarah Palin went on the record to families of children with special needs that they would have an advocate and friend in the White House if John McCAin and she were elected. Well, you don't sound like an advocate to me when you go ahead and make fun of fruit fly research aimed at helping people who have autism. What it makes you sound like to me is an a$$. If you are interested in more about my dislike of pandering to the special needs community read my blog about that.
Lying about being an open book. Governor Palin said she was an open-book and that her health records would be released. Well, I'm going to have to call bull-$hit on that one. In her interview with NBC, she said they would be released - but where are they? She is aware of the questions regarding her pregnancy and why would she risk her baby and her life to travel back to Alaska after her water broke when there were excellent hospitals in Texas (arguably better than in Alaska).
Ethics violations. Enough said. She has been found to violate the State of Alaska's Ethics Laws. And then she looked at the camera and said she was glad to be found not in violation of those pesky ethics. UGH.

That's all for now folks. I need to go find those Tums or Rolaids, or maybe just a good bottle of wine. Thanks for reading and thinking. Don't forget to vote.

Hi My Name is .....

2008-10-30T00:22:00.005-04:00

Well, it's official. I have OCED. I need a 12 step program to break free from the vicious cycle of news media, blogs and online news outlets. My children look at me and ask, "mommy when are we going eat again?" My husband wants to know when we get our life back. It's gray and dismal, and bleak here in the black and white world of American Presidential Elections. I'm going to be politically incorrect here: what's so interesting is that the black man is the man who offers hope, courage, promise, and when he speaks I feel better. The white man offers fear, hatred, anger, war, agression, you name it, and when he speaks I feel my blood pressure rise. And don't even get me started on that woman - ugh! I need a whole other 12 step program about her.

So here's my 12 step program. I am going to list 12 new reasons why McCain and Palin are not getting my vote, and they shouldn't get yours either. But, you know what, Obama has so much going for him. I'm going to do one better. I'm going to end on a message of hope and promise and the American Dream just like my candidate, Barack Obama. So in my next blog, I will list my 12 reasons why Barack Obama and Joe Biden are my candidates, and why you should vote for them too.

And if you still think that Sarah Palin is the most popular governor with 80%approval ratings (which by the way her ratings dropped to 68% Oct 1), riddle me this: Here's A-Nother Great Rally for Obama in the city of Anchorage Alaska, at 7am (not a popular time for Alaskans in my experience) and 20 degrees (which by their standards is darn right warm). They made a human Obama Logo. I want to make an "I heart Alaska" sign! That same Palin Ratings poll showed very interesting numbers for Democrats and Independents (the Republicans still support her 93%) "Among Democrats, her approval rating dropped from 60 percent to 36 percent, a 24-point drop. Among independents, it fell from 82 percent to 64 percent, an 18-point drop." I haven't seen a more recent poll. I'm keeping my eyes out but this was what google brought me.

So, thanks for stopping by. Now you know why I haven't written much lately - that darned pesky OCED. I'l be back real soon with the first part of my 12 step program.

Parents of Children with Disability don't need Pandering!

2008-10-17T08:33:00.002-04:00

I am so angry with John McCain for choosing Sarah "I have a child with DS" Palin and pandering to parents of children with disability. So she has a baby with DS. Big Deal. He's 6 months old now. If she's dealt with Early Intervention already - then wow, she's ahead of the game. But she hasn't dealt with school and much in the way of therapy yet. My daughter was born with DS in Alaska. She was seen early by a PT (physical therapist) privately because our Early Intervention program in my town didn't have any PT's on staff and we didn't want to wait for them to fill the slot. It wasn't until Ellie was almost a year old that I learned she could qualify for Medicaid through the TEFRA program (Katie Beckett Act). She was initially denied because her initial eval at 2 months old didn't show any delays. That's becuase 2 month olds don't do any thing but sleep, poop and eat. Ellie had those down pat.

So Sarah "I use my children when they can help me politically" Palin has been carting this adorable little baby who will be delayed (you can see his low muscle tone in every picture) all around the country - especially New Hampshire and the Great Northwest there. When is he getting therapy? When is he seen by his Early Intervention Team? I worry for that little boy - being used in such a way for politically expediency and votes.

Thankfully a freind on my DS listserve sent a link to the comparison of McCain and Obama's positions on People with Disability. Please read this. It is eye-opening. I was voting for Obama before I read this. Now it just reconfirms. But for those of you who didn't know their positions and just assumed that Sarah "I have a baby with DS" Palin would be a strong advocate - ha. I doubt it. Now, what has she done for children with disability in Alaska? She is the aunt of a child with Autism. So before she became a parent, she knew about the struggles. Yes? But it's arguable that she has truly helped the disability community in Alaska. She line item vetoed six appropriations for community disability services or for accessibility modifications to public accommodations as governor. It saved the state less than $800,000 - when they had a huge budget surplus. Not to mention, as a previous resident of that state, I can tell you it is not accessible for disabled persons. It is difficult to get around. Read this blog from distinguished professors of Disability at the University of Kansas to get a second opinion.

I'm also Angry with Sarah "I didn't blink I said yes" Palin who left Alaska to be run by ???? the RNC???? while campaigning instead of taking care of her state and her children. I have the utmost respect for working moms, and even greater respect for working moms who have children with disabilities. It takes a lOT to be a parent of a child with disability and to add to that working full-time is an incredible juggling act. My hat goes off to those parents.

That being said, Sarah does NOT have the experience to be VP of the US. Maybe of, I don't know, Turkmenistan? But let's get real folks. She should have said, "no way. Are you high right now? I"m out of my league here." But she didn't. In her fantasy land she thinks somehow that mayor of a town of less than 9,800 and 20 months as governor of a state of only 650,000 makes her somehow qualified? And she's using her kids to try and get votes. How pathetic and cruel is that? Just to give you an idea, Chicago, Illinois has 2,836,658 people in 2007. And representing those constituents for 8 years in the Illinois legislature is less qualifying than being the mayor of Wasilla? IS she nuts???

Not to mention, that Obama has also taught constitutional law to Law Students for years. So obviously he knows a little bit more than just the name of the case Roe v. Wade. Like maybe how there is a Right to Privacy in the Constitution. And maybe, even the difference between states rights and federalists?! I am so fed up with the pandering of the Right and their assumption that average americans don't pay attention to their words. Both Palin and now McCain have claimed they are Federalists and in the same sentence have said they believe in strong states rights on issues like Roe v. Wade. They can't have it both ways. Federalists believe in strong Federal Government and weakened states rights. The first Federalists wrote the Federalist Papers: John Jay, Alexander Hamilton and James Madison. Obviously, Sarah "Education is not Important to me" Palin didn't pay attention during civics class.

So let's show the Republicans that we won't be pandered to. And that we pay attention to their words, just as John McCain suggested we pay attention to Obama's words. If we americans don't pay attention during the next 19 days, we will get what we deserve, again. Please, don't accept pandering. Don't accept the negative bullshit ads. Ask yourself why is the McCain campaign focused on negative bull shit ads and not the economy? Read their websites. Read the news. Main Stream Media is not the enemy. Ignorance is. And most importantly, on November 4 - go and vote!

Barack Obama is so cool!

2008-10-15T16:46:00.011-04:00

I was really impressed with how he has handled himself during these three debates, and the whole campaign so far. If someone were throwing that many curve balls I'd be swinging in the dirt. But not Barack. He calmly corrects the worst of the crap, and ignores the rest of it. I loved that he said the American public doesn't care about their (his and Sen. McCain's) hurt feelings but rather the economy and what the two candidates propose to do about it. He says the things that we are all feeling, but he says it in a way that isn't crass.

Originally I was unsure who to vote for. Then John McCain went ahead and did something really stupid and picked Sarah Palin as his running mate. That clinched it for me - Barack Obama had my vote from that moment on. But still, I had been missing Hillary, and didn't know much about Barack, so my support was lukewarm. After 3 debates and many hours of news: papers, blogs, radio and tv, I feel excited to be voting for Obama. I am PROUD to be an Obama Mama! When he speaks, he doesn't sugar coat the problems or the solutions but I have hope when I hear him. I just get high blood pressure when I hear John McCain. And don't even get me started on Sarah "New Hampshire is in the Northwest" Palin. UGH!!

Barack Obama made a fantastic choice as a running mate - Joe Biden is awesome. He was cool as a cucumber during his debate with Sarah "you betcha" Palin. Far more cool than I would have been. My 9 year old could out-debate her on the issues. The running mate pick says more about character, choices and the direction the candidates plan to take our country. Sarah "dinosuars and man walked the earth together" Palin would take us back to the stone age. I'd like to head to the future not the past.

Fear, loathing and the Republican Party Politics

2008-10-10T23:53:00.005-04:00

I received one of those viral emails that asks you to suspend your intelligence, take what has been written on faith and forward it to everyone you know. As my confirmation class teacher at my United Methodist Church would tell you - I don't take anything on faith alone. I left him exasperated and frustratred beyond belief on every class meeting. "But how do we KNOW for certain?" "Where's the proof, the evidence?" So in the internet age, one of my favorite sites is snopes.com. I don't want egg on my face if I'm forwarding crap around to my friends and family. If I'm sending something alarming to someone I want to know it's truthful, so that I can have confidence in what leaves my laptop.

What, pray tell, is the email I received that started this train of thought barreling down the line? Funny you should ask. My husband received an email from someone close to him (I won't name names) about Sen. Barack Obama. It alleges that in two of the books he has written, Lessons From My Father and The Audacity of Hope, that there are frightening and dangerous passages. These speak to the dangerous nature of his thinking and judgment. Would you want someone likke this in the White House? My husband had been aware of this b******** for a long time and fired off a quick email reminding the sender that most of the quotes were inaccurate and all the accurate ones were taken out of context. He also asked the sender if he had actually read the books.

Here's the shocker. The sender had read the books! And, he feels that the senator is "a far more elliquent [sic] man than Mccain [sic].... but that is not the measure of a leader." Now, I'll admit to not reading the books. I haven't read much at all in the last year with moving across the country, settling my son in one school, only to have to pull him and settling him in a new school, and of course having Ellie and getting her qualified for pre-K, through the first IEP, settled in school, evals for private therapy..... guess I didn't need to go on there. In any event, life is finally settling down and I am finding time to read and so this to me was a great recomendation for a book! So I will be curling up with The Audacity of HOpe which I just got from the library - the last copy available. All of the copies of Lessons From My Father are out right now.

But what really bothers me is that this well educated person could read these books, know that these passages - if true - are taken out of context and do not mean what they sound like, and send this hate-filled message of fear out to who knows how many? Hopefully it was only to his brother - my hubby.

Last night while sitting at my son's swim team practice, someone noticed I was reading a book. "Oh, what are you reading?" I showed her the title, The Audacity of Hope, by Barack O'Bama. (I got the last copy at the library!) "Oh! You're one of THEM!" she exclaimed. Just what in the H#?! is that supposed to mean? That I'm one of those "free - thinkers" who doesn't just take the right wing pandering pablum at it's word? Then she said, "that explains why you weren't so excited about Sarah Palin over the summer when I mentioned it. You being from Alaska I thought you would have been more excited." Well, I had to explain to this very nice person, that the information being passed around down here in the lower-48 is not accurate. I explained that Sarah is not so popular in Alaska anymore. "Well she has 83% approval." I said, "that's dropped over 20% since she was nominated as the VP candidate." "Not to forget, she has been found guilty of ethics violations in the Troopergate." "Alaskans on all sides of the political fence are unhappy with her." "Even right wing politcal pundits have said she is unqualified to be the VP, let alone, God-forbid something were to happen to elevate her to the Presidency." It was falling on deaf ears. I was "one of THEM."

For those of you who want to know what Alaskans think check out these two blogs: Shannyn Moore: Just a Girl from Homer and The Mudflats. Enjoy!

Garden of Wonders.....

2008-10-06T22:59:00.004-04:00

Finally, after a long, hot summer I am getting to my gardens. I have looked at them for the last 10 months (since we moved in) and dreamed of what they might look like. I have a long way to go, but my first day out in the garden was quite wonderful and productive.

As the parent of a child with Down Syndrome, I kind of "assume" that Ellie will take longer with everything. I just "assumed" that I would have to wait longer before I could productively garden with her at my side. I was able to do this with her brother at a young age because it was dirt! What boy doesn't like to dig in the dirt. Not to mention, he didn't mind taking a bath, and well, Ellie can scream like a banshee when I bring a cup of water near her head. So, I just figured, "oh well, next year." But today, I got back early from my run and the weather was perfect for me to garden, so after a quick shower (I get really gross after a 5 mile run) I headed out. I made good progress in the 2 hours she was still at school, but it wasn't as much as I figured I needed to get done given my time limits tomorrow, and the impending rain on Thursday and Friday.

When Ellie hopped off the bus, I took a gamble. "Ellie do you want to go inside?" "No." "Do you want to ride in your red car?" "No." Do you want to dig in the dirt with Mom?" "Yeah!"
Well, there, I had it. So I got her little yellow plastic pail and shovel. She followed me to the garden and plopped down in the middle of the dirt with a big smile. She had fun with her shovel for a little bit, but kept eyeing my big shovel. I suggested a plastic children's trowel from her brother's earlier years which she happily worked with for an hour. She filled her bucket and my big bag of potting soil, and her shoes!

I was able to double the amount of garden completed, and then she started to rub her eyes. So off to the bathroom for an almost totally happy bath! I was thrilled for her. She has hated her baths since moving here, but today's bath was mostly happy with lots of soapy bubbles and scooping and pouring with her cups. The only tears shed were over the hair washing but they were much fewer and ended quickly.

After the bath it was off to take a nap?! Another unheard-of event in my house. Tonight I checked. Surprisingly, the moon was still yellow.

Tomorrow we won't get a repeat as Ellie has therapy right after school, and then we have shopping at Costco. But Wednesday is looking like a great day to repeat this wonderful gardening adventure with Ellie. Wonder if we'll get another nap? The moon will have to turn blue for that!!

Welcome to the 21st century Sen. McCain.....or

2008-09-27T21:36:00.004-04:00

what about MacSpeech, or Dragon NaturallySpeaking 9 Preferred?

It's been widely reported that Sen. McCain can't use a computer due to the injuries suffered while a POW in Vietnam. However, as the parent of a child with a disability I have to call phooey on that. I have a lot of respect for the Senator's heroism but to cloak one'self in disability strikes me as wrong. I have a far greater respect for those who work to rise above that. We live in an age of technology which can be used to augment our abilities and amend for our weaknesses.

Technology can do amazing things. I have seen children who desperately want to communicate with people in their world use Assistive Technology to "speak" for them. The joy in their faces is palpable. Two weeks ago I was so blessed to witness this sort of event unfold in front of me. I watched a mother of a young boy with Autism "speak" to his mom through this device. The joy on her face brought tears to my eyes. I know that feeling down to the core of my being. When your child who has all these thoughts and feelings bottled up inside and no matter what you do they don't come out, until [pop] the top comes off! Out they flow and you are just so amazed and grateful.

So I have to ask myself why an educated person who works and functions in this highly connected world would not take advantage of the technology available today? I read a blog posted recently from an Astro Physics Professor, Dr. Pamela Gay, who's website www.starstryder.com I enjoy reading even though I don't always understand it all. She "wrote" an entire blog using voice recognition software without her fingers having to touch the keyboard at all. It did a fabulous job. This is not the voice recognition software I was familiar with, but a much improved product. I have admittedly been out of the tech field for about 9 years - or as long as my oldest child has roamed the earth. That's a lifetime or two in technology. Heck, I'm a dinosaur (don't tell the young earthers!).

So, back to the question. Why would the Senator not use a product that would improve his abilities to communicate with his constituents, his colleagues, his staff, etc? This is the computer age. I don't know. But I do recognize this as a failure to "change" or embrace change around you. I see this as something of a metaphor for clinging to the old ways even though newer and better ways are available.

just my 2 bits tonight.

As An Ex-Alaskan, what Do I Think of Sarah Palin....

2008-09-24T22:03:00.019-04:00

what do I think of Sarah Palin? Of course, the day after her acceptance speech to the RNC, I think that everyone who asked that question was assuming a very positive response on my part.

Ummm, I had to hemm-and-haw a bit. Especially with folks I just barely know. But even with people who knew me in Alaska, ummm, well, uhh, can I get back to you?????

In fact, my family will confirm this, my political opinions have changed dramatically throughout my adult life: from far-left, to middle, to right-of-middle, and back to left-of-middle (if not more left than that). Parenthood, and stay-at-home-mom-hood helped to forge a more conservative view. Then there was the parenthood of a child with special needs.... definitely a more conservative view.

However, although I am against eugenics, I applaud the Kennedy-Brownback Bill (and Patricia's website), but I can not be against Choice. That issue requires thoughtful expression, and a blog all it's own. Look for it soon.

In the meantime, here are 6 of the reasons why John McCain's choice to use Sarah Palin in an attempt to garner this woman's vote has totally backfired. And so my conservative friends, I hope you understand...this mama is for O-Bama!

So what do I think of Sarah Palin? In the words of Borat, "Not so much." There are a variety of reasons and so in no particular order I begin with the most outlandish thing I've ever heard in politics...

1. "Witchcraft??!!??!!" OMG!!!!! I just finished watching the news tonight (MSNBC w/Keith Olbermann discussing Sarah Palin's old minister) and I am beyond shocked. The VP of a major world super-power should be beyond witch hunts. I don't know about you, but I have no desire to return to life in Salem circa 1692.

2.I like to call this "Palintology" (but I did see that first on Keith Olbermann's show tonight). Science. The scientific method. The Vice President of a world super power should believe in science, evolution, global warming and carbon dating. She should not believe that the world is 6000 years old. She should agree with her Presidential running mate that humans have played a role in global warming, and that it is a real challenge facing our world. And for those of you who are unfamiliar with Creation Science ( a complete oxymoron) do check the link out, and scroll down to the section "Characteristics and Beliefs" where it describes the beliefs of Young Earth Creationism. They discount the scientific method when it is inconvenient to their belief structure. Their beliefs colminate in the idea that dinosaurs and Man roamed the Earth together about 6,000 years ago. Essentially, the Flintstones as reality TV. That is the end of their Great Waterslide down the slippery slope known as "faith as science" hill. I am unapologetically critical because I have Faith in God and I understand the basic principles of science and they work together. I believe He is Just, Kind and Honest. I don't think for an instant He would need to Lie to us. And that's what Creation Science requires. A BIG LIE.

3. This isn't really a reason, as naming your children is a very personal thing. But this is pretty funny: I found a link to the Sarah Palin Baby Name Generator. I would be Wrangler Tractor Palin. After #2, we needed something a bit light hearted :)

4. Truth about Earmarks. She says she's against earmarks, but what she does is ask for and accept them. Gladly. I happen to agree with Sen. McCain about earmarks, but I think that he sold his position out entirely when he chose Sarah Palin. I don't believe his position on fiscal responsibility and Earmarks any longer.

a. She claims to have said "no thanks" to the Bridge to Nowhere. But we all know she was for it. I lived there, and remember that she was for it, before she was against it. But only after it became so politically unpopular (in the lower 48) . Now there is a road (love the picture!) to nowhere. (it's finished now).
b. Here's what she had to say about Representative Don Young, "And our congressional delegation, God bless 'em. They do a great job for us. Representative Don Young, especially God bless him, with transportation -- Alaska did so well under the very basic provisions of the transportation act that he wrote just a couple of years ago. We had a nice bump there. We're very, very fortunate to receive the largesse that Don Young was able to put together for Alaska." –Sarah Palin, on federal pork and earmarks secured by Rep. Don Young (R-AK) (I lost this link and am looking for it...check back)

5. Aerial Bear and Wolf Hunting. Ok. I lived in Alaska, and although my husband and I are not and could not be hunters, I get that hunting is big there. I don't have a problem with traditional hunting....but I have a huge problem with aerial bear and wolf hunting. Read the link - enough said.

6. Geography. Ok, so she never said, "I can see Russia from my house" but it sure did make you laugh!! Thank you Tina Fey!! But, really, she did claim to have some foreign policy knowledge because Russia is a neighbor, and you can see it from part of Alaska??!!?!! This link is to the interview with Katie Couric.

These are just a few reasons why I won't support Sarah Palin, and why John McCain lost my vote.

DSD's and their cure

2008-09-19T15:48:00.005-04:00

My husband and I termed THOSE days, and any parent of a child with disabilities knows what I'm talkin 'bout. In our house we call them - Down Syndrome Days. For the rest of you, it's those (thankfully rare) days, or moments in a day, when I lose my positive outlook for Ellie's future, and all seems bleak and hopeless. There is no rhyme or reason to why those days/moments happen. All sorts of things have triggered them. And what causes the feeling to go away is the same thing that I use to get through every teaching moment with Ellie - patience, love and time.

It's odd that I should be having a DSD(Down Syndrome Day) moment today, or right now. Earlier today when Ellie slowly climbed down the bus steps with only a little help from mom. I can't say she hopped off the bus. Someday, yes. But certainly, not yet, even in a figurative sort of way - just ask the folks who wait very patiently in their cars.

Anyways, after she got off the bus, we played ball in the front yard for a bit. I am trying to get her to be more active, as she has put on some weight this year around her middle. As we were playing catch I "caught a glimpse" of our past when she was about a year old and receiving physical therapy in our home. Our PT at the time was wonderful, and also the parent of an adult son with DS. So she was more than just a PT. She was a mentor, and a tremendous support in those early days. She helped me to develop an ability to see the future for Ellie.

One of our sessions she had Ellie in a supported standing position (long before Ellie was standing and walking on her own) and attempting to catch and play ball. Ellie was trying to grasp the idea, let alone the ball, and got very frustrated and tired out quickly (insert crying, screaming here) so we changed activities quickly. But, I got an idea that some day, Ellie would be standing on her own two feet and playing catch successfully with other people. At the time, I REALLY had a hard time invisioning that. Ellie seemed to be so slow to pick up the gross motor skills, and fine motor skills I thought, "yea, right. That's years away. If ever." I had a lot of DSD's back then. But today, I saw her. And it wasn't that many years later (2 1/2 really). She's actually been able to play ball for a while now. But today she seemed especially accomplished at it. She does still need to be prompted to catch (the motor planning is a little slow for her, but not by much) and you need to throw an easy ball to her. Once she has the ball, her throwing ability is really awesome. She loves to look at you, and throw it in a different direction. And then, while she races you to the ball, she just gigggles, and giggles and giggles!

The memory of that moment has lifted the DSD. Her giggles are miraculous. So is her smile. It's infectious. Like I said, patience, love and time lift the DSD's away. Especially the love :)

When will the Republicans and this Administration Get It?

2008-09-17T16:36:00.002-04:00

We need new energy sources, not more oil drilling. UGH! I just read the headlines about the House of Representatives Energy Bill finally passing. Exciting news as it includes incentives for alternative sources of energy. But the Administration and the Rebublicans don't get it. And are threatening a veto if the Senate can get their bill off the ground. I have to do more research in to the specifics of these bills, but at least the House has gotten somewhere. I sure hope the Senate gets a bill passed quickly and they get a compromise pushed through to put the Administration's heels to the proverbial fire. It would shake up this election and get the candidates focused on the issues.

Republicans scare me. We need to get off of oil. Plain and simple. It is NOT renewable. Using it contributes to Global Warming. We are responsible for our energy crisis and our environmental crisis. We can solve both if we act NOW.

Dress for Success.....do they teach this anymore?

2008-09-16T20:54:00.005-04:00

I hate to sound like I'm from an "older generation" complaining about the "young whipper-snappers" but, I'm going to. I attended a mandatory orientation for all Substitute Teachers in my school district today. It was very well attended, and I hope that means that there will be sufficient substitutes available for all of the schools in our county through the year. I know that at my son's school last year, they were desperate some days to find a substitute. And, so I look forward to the (hopefully many) calls in the days and weeks and months ahead to substitute.

One substitute teacher asked, "Is there a dress code?" Well, I have to say, "if you have to ask, maybe you should look for a different job." As I looked around the room, I realized you could see the generation gap as plain as day. Now, I may be pushing 40, but most people think I'm in my early 30's. However, not this day. I was dressed as if I were going to work. In theory, I was, even though I wasn't getting paid. This was Orientation, held at my employers offices, and run by their H.R. It was work, plain and simple. So you dress the part. That's what I was always taught by my parents. However, you could the early 30 something's and younger, had missed that lesson, if they even got it. Some folks had nice jeans and tops on, with closed toe shoes. But, many had t-shirts, faded, or torn jeans, flip flops. One "dude" was in a t-shirt, bermuda shorts and flip flops! He looked more like he was headed for happy hour with the boys, than work. There is no way you will ever command respect from your students if you dress like them, or worse.

When I was a teenager, and a college student, my parents used to constantly remind me that "the clothes make the man." Guess I needed to hear it often, as I was going through a punk, black-only wardrobe crisis. As much as I hated the nagging, I'm glad they never gave up. It stuck with me. So, when I showed up at my son's school this morning before my daily run to let them know I'm now available to sub every morning - they offered me a job right then.
Unfortunately, some of the attendees didn't look like professional anythings.

unplug your run

2008-09-12T22:43:00.002-04:00

Well, today was supposed to be a 4 mile run, and I had just headed out on my road with my ipod securely strapped to my arm. Yesterday I bought a new arm band for it so it wouldn't flop around on my waist, and I wouldn't have to carry it. I test ran it yesterday at the gym for 4 miles on the treadmill - worked great!

So, cloudy weather, still air, rather humid, turn on my generic workout playlist and hit the road. I was rather tired, and not so into running till my feet hit the pavement. It always feels good to me - that rhythm, the feeling of my whole body working hard for something good. About 1.4 miles into the run my Ipod freezes on me! Ugh!! I've struggled with this ipod and this error before. So I try to reboot - it does, but *lost* my playlists, and all my music! So after cursing it, I just pulled the ear buds out of my ear, and, listened to the world around me.

I live in the woods, and so my streets are alive with mother nature. I chatted with a garter snake who sought the road for some warmth. I mourned the loss of a frog, who didn't hop away from the oncoming car in time. I cheered on my neighbors who were out for a run with their dogs. I marvelled at the sight of a dozen gold finches flocking together, and enjoyed the blue birds in flight and song. Later after my run I delighted in a glimpse at the common flicker looking for bugs in one of my trees.

So the next time you head out for a run, I leave this thought:
unplugging your run, nature awaiting rejoice, wings carry away

small steps in so many directions

2008-09-04T00:03:00.002-04:00

Well, this blog started as a blog about raising a child with a disability and the small steps she and I and the whole family take each day. We learn a little more every day, and she progresses a little more, lately it seems like every day. Which is very exciting!

But as Ellie grows, and truly becomes more independent I have time to get back to the other parts of my life and interests. Of course I don't have much time in any given day or week, so there too I make small steps. The big area of interest for me right now is running. I love to run, although I'm not fast, I just love the feeling. I tried to get back into running last summer and forgot that I was older, and training on hills (really big Alaskan sized hills). So, it felt good and the next thing I knew I was over training and blew out my hamstrings. Well, mostly my right one. So, I took it easy and then we got orders to move and I REALLY took it easy. With running at least. I had lots to occupy my time otherwise.

Now that we are settled, and my hamstring feels better I started running again. But this time not so fast and furious. I am learning to take small steps here too. I have finally learned the benefits of rest - maybe. It's hard to take a day off of running - the weather's beautiful. But I have goals and I don't want to hurt myself again. In 1 week I have my 2nd 5k of the season. My goal is a sub 30 a big improvement from June. As I said, I'm not fast, and 8 months off hurt my time. After that I hope to successfully train for my first 1/2 marathon in December. It feels good to run, but I can tell that I am older. I listen to my body better now, or maybe it just hollars at me louder.

Back to School

2008-09-03T23:37:00.002-04:00

{Sigh}.

It's hard to believe summer is over. Well, especially when the high was 95 today. We are on day 3 of the new school year. I have to say it's amazing - so far. The kids are getting up early, everyone is happy and ready for school. Well, as much as 9 year old's can be excited for school. Tonight he told me he'd like to go to college at a young age like 15 or 16. I reminded him that he'll attend at 17, like his mom, dad and grandfather. But that's not early enough, hmm. I'm thinking it's because he wants to get school over with so that he can get on with his life.

It goes by so fast as it is. But you don't realize that till it's too late.

special needs advocate in the white house?

2008-09-03T23:24:00.003-04:00

As an as-yet-undecided-voter, I just watched Gov. Sarah Palin's speech at the RNC. Wow, she's a great speaker. Even as a previous resident of Alaska, I hadn't heard her speak, so I was very curious.

I must say, it's quite tempting when she said to parents of children with special needs' that they would have an advocate in the White House. But as a citizen, I have to weigh all the issues. I can't, in good conscious, vote based on a single issue.

Now I'm wishing I had watched Biden and Obama speak at the DNC. And maybe Michelle Obama and the Clinton's as well. This election appears to have posed a good challenge for Americans. We have real issues facing this country and two sets of intriguing candidates from which to choose. I hope, as a country, we choose wisely.

BTW - she has a great looking family and Trig is just a cutie!

Good stuff for people with intellectual disabilities

2008-08-17T00:58:00.005-04:00

So, I forgot these in the last post, and wanted to add them here.

First, I've added my voice to the Special Olympics campaign Pledge to the Stop the R-Word

I encourage you to Pledge as well

Second, this is a fantastic PSA for the Arc of Northern VAIt was produced by the Arc of Virginia and the Arc of Northern Virginia, plus Blueberry Shoes Productions

Third, this is a fantastic site and their tv spot called homecoming aired during the Olympics - it brought tears to my eyes. Kudos to the Foundation for a Better Life!!

Fourth, this is amazing. What a great self-advocate!! Jill Egle, Co-Executive director of the Arc of Northern Virginia, has a bone to pick with Ben Stiller over the movie Tropic Thunder. Jill, who has an intellectual disability, sets the record straight.

Why I won't see Tropic Thunder

2008-08-17T00:03:00.002-04:00

My 3 year old daughter is beautiful, smart and so incredibly sweet and kind to others. Where ever we go, people come out of their way to visit with her. She shares her smiles with almost everyone she meets. She also has Down Syndrome.

Since the day we received her diagnosis, my husband and I have worried about how society would treat our little girl as she grows up and becomes a young woman. She has had to work so hard in her life to achieve milestones we all take for granted. She is still struggling to meet milestones most three year olds have mastered, but she is persistent, and perseveres, and she is so patient. Since her birth I have had the pleasure of meeting some wonderful people; all of whom have a variety of disabilities. They are all individuals as unique and special as any one else. Seeing adults with disabilities reaching their full potential, living and working and volunteering in their communities has filled us with hope for our daughter's future. We are also encouraged when we hear great stories of acceptance and RESPECT like the one memorialized in the tv spot about Shelley Eyre produced by The Foundation For a Better Life.

But the release of the movie, Tropic Thunder, has been a slap in the face, and what's worse is that the actors, especially Stiller (whom I used to admire, but no longer) don't get it. Maybe you need an education, maybe you are slow. So, I'll keep it simple:
1. You make movies with characters that people emulate.
2. Insensitive, rude, cruel people will continue to perpetuate the awful stereotypes and rude behaviors demonstrated in this poor excuse for entertainment.
3. Instead of promoting acceptance, tolerance, compassion and most importantly RESPECT, the movie encourages cruelty, intolerance, rudeness, and a complete disregard for individuals and their feelings.

As a parent of two young children I try to educate them on the values of our society, including, but not limited to: acceptance, tolerance, and compassion. They are supposed to become productive members of society someday. But how can I compete when a movie like Tropic Thunder comes along? I mean seriously folks, you have some popular actors that children admire and want to emulate. These actors are behaving and talking in ways that are completely unacceptable. Free speech aside, did common sense go out the window when someone pitched this movie? Didn't anyone along the way say, "hey this is wrong. Why don't you go pick on someone your own size?" Or are you all stooping to the level of the school yard bully, and picking on those least able to defend themselves? Is this how you want to be remembered?

Ever since my daughter's birth, I have been told that I am too sensitive. When I have commented to a friend or family member over the use of the R-Word, somehow I'm made to feel like I'm the one who is wrong. I hear, "we wouldn't call your daughter a Re****". But they'll make stupid jokes about how they did something Re****ed, or call each other Re**** when someone makes a mistake or does something stupid. But my daughter, and people like her, are the foundation of the clinical and original definition of the R-word. It comes from the Latin retardare So when you use that word in slang and fun, you are demeaning all the people that word clinically defines. And somehow, this isn't supposed to bother me?????

So, I don't know what the writers, actors and directors were thinking, but I do know what I am thinking. I'm thinking that I will use my daughter as a role model of persistence, perseverance, and patience. I am not too sensitive - the R-word is wrong and mean. I will continue to stand up for her, and all the people who are hurt by the derogatory use of the R-word.

Happy 91st birthday!

2008-08-07T21:28:00.003-04:00

1917 - The year my Honey (she never wanted to be known as "Grandma") was born, also was the year that the Russian Revolution breaks out; the first jazz record is recorded; the 1st NHL championship game ever played the 1st time American Hockey team wins Stanley Cup (Seattle Metropolitans beat the Montreal Canadiens); British troops occupy Baghdad; U.S. enters WWI; Mary appears to 3 shepherd children in Fatima, Portugal; the Raggedy Ann doll was invented; 1st class mail now costs 3cents an ounce; New York State now allows women the right to vote; twice this year suffragists were arrested for picketing at the White House; and, Boys Town was founded by Father Flannagan in Nebraska. What a busy year, and those were only a few of the headlines from 1917.

Andrew Wyeth, Arthur C. Clarke, Arthur Schlesinger, Jr., Dean Martin, Indira Ghandi, John Kennedy, Jr., Katherine Graham, Phylis Diller, Robert Mitchum, Dizzy Gillespie, Robert Bloch, and Zsa Zsa Gabor were all born this year. Some are still with us and some have gone ahead.

What did things cost when my Honey was born? Wow! I googled and found that in Morris county NJ (thanks!!) ketchup was $0.12 a bottle, and sugar was $1.89 for a 25 lb. sack! There was a 12-room house for sale, only $4,400.00. Times sure have changed.

Last year we celebrated Honey's 90th birthday with a fabulous family reunion. We came from all over the US to celebrate and reconnect. Honey and my Pop Pops had 4 children and they were all there, along with 11 grandchildren and several spouses, and 6 great-grandchildren! Although Pop Pops passed away a few years ago, Honey was fortunate to meet a widower who shares her life now. The most recently married grandchild and his wife hosted at their new house which also has a pool, so it became a wonderful pool party for the great-grandkids.

What a difference from family gatherings of old. Instead of being the kids playing the games and swimming all day, we were the grown-ups standing around chatting, taking kids to the potty or changing diapers, switching off parenting duties, for a chance to grab a bite to eat. Our family is lucky that we have such a rich history of family gatherings since all the cousins were kids. My mom and her sisters all settled to raise their families near each other. Only their brother headed out to explore the world beyond Lancaster County. He and his girls would come back to visit most every year though. What great memories of old - the extended family meeting after church at Honey & Pop pops house, taking turns hosting holiday meals and birthday parties. These memories call to mind the images Norman Rockwell captured.

The last time many of us were all together was a wedding 4 years earlier. Before that, it had been many years; since the last big family gatherings occurred when we were in middle school. My grandparents moved away to Arizona when I was in junior high, and we all got very busy with the active lives that teenagers have. We still had Christmas and Easter, but it wasn't quite the same.

But now that we are all getting married and raising our own children, we feel the need to reconnect with our past and share it with the next generation. So much has changed since my Honey was born. Even since I was born! I long for the simpler times of my childhood. Our kids don't have the same luxurious freedoms we had at the same age. However, when we all get together again, it's like recapturing that Norman Rockwell moment all over again. And we have the opportunity to share that family feeling, that freedom feeling with the next generation. To give them that connection to something bigger than they are.

I'm not always certain all of the changes we've seen in the last 91 years are for the better. And, thankfully, some things never change. I'm grateful to have my Honey and hear the stories of her childhood and life with my grandfather when they were young parents. Their adventures, trials, tribulations, and most especially the funny, heartwarming stories of their children (our parents) being, well, children, bring a smile to my face, and bolster me when I'm facing tough times. Somehow we manage through the worst of times, and hopefully we savor the best of times, and find shining moments that stay with us forever.

I realized as we celebrated Honey's birthday last year, that she gave us the the best gift of all. These fabulous family gatherings and the wonderful memories we treasure. I hope we continue her traditions so that our children and their children will have these treasures to hold on to through their lives.

It's the same at the beginning and the end.....

2008-08-04T21:33:00.002-04:00

Today we took Nona (grandma) to visit DC, where she grew up. We visited two musems, and had lunch at a favorite haunt.

Walking through DC with Nona, I realized just how much we regress physically as we age. Don't mistake me: my Mother-in-Law is a wonderful lady. She's lots of fun to visit with, she loves to spend time with her grandkids, and she loves to help out. She is full of life and energy, but after a few broken bones and arthritis her get-up-and-go is not the same as it was 20 years ago.

I really enjoyed taking her on a romp through her old stomping grounds and listening to her stories of days of old. I pushed Ellie in the stroller to and from the museums and carried her to and from the restaurant. We had a 3 1/2 block walk to the restaurant, luckily some of it was shaded. On that walk I realized how I'd become used to traveling at the frenetic speed of an 8year old. Nona walks at about 1/3rd our speed. Surprisingly, so does Ellie! Her small steps and Nona's are the same. Luckily I can still pick Ellie up and high-tail it when needed. Like when the meter runs out on your car :)

Since I can't carry Nona, :) I have to plan better for the next trip so that we can spend more time enjoying the musems and less time walking to and fro.

Social Services Buzzword Bingo

2008-07-10T21:58:00.000-04:00

One day, I will finally have all the social services paper work filled out, filed with the appropriate departments, approved applications for Medicaid and the EDCD and MR Waivers and be able to sit back and relax with a beer on the front porch and my feet up knowing that I have done all that I can to address and protect my daughter's needs. One day. But not to-day.

I am a small step closer to that One Day. I now know that Social Services is the intake office for the EDCD Waiver, and Medicaid. They need to hear the words, "I am requesting a screening for the EDCD Waiver for my child" in order to schedule the home interview and screening. It was not offered, exactly. Apparently 3 weeks ago when I called the same Social Services person I neglected to mention that sentence, and so I did receive a Medicaid application (that is rather confusing to fill out) but we didn't get an interview or screening scheduled.

To-Day I felt as though the colander that is metaphorically "my brain" was placed by some unseen government workers into a giant salad spinner, and they then proceeded to spin my colander whilst adding a bit of greenery to the salad spinner. This was the way the information regarding EDCD and MR Waivers along with Medicaid, and the CSB, the disAbility Resource Center and the Department of Social Services were bandied about in conversation. I still can't seem to wrap my brain around any of it with clarity.

I did get a bit of good information which I will be collecting to share with all who must traverse this crazy trail of Waiver and Medicaid paperwork. That is that on the Medicaid application you should indicate that "yes" I do want to speak with a social services person regarding specific issues. Namely those issues are "Long Term Care (L.T.C) and the EDCD Waiver". I had unknowingly checked "No" for that box initially. How was I to know otherwise?

When we were in Alaska this entire process was amazingly easy. I was given the contact name of our counselor. She provided a packet of information on how to fill the Medicaid forms out, and explained what each part of the form was really asking. Government-ese is a whole different language than English, and you really do need a few courses in it to become fluent. I never learned it, and it seems that since we are closer to the source of all government-ese it becomes more complicated to understand.

I will blog more about this process of applying (hopefully successfully) for Medicaid in VA and the EDCD and MR Waivers. At the least I can share my pain and misery with others :) If I can help anyone avoid my pitfalls and mistakes I will feel successful.

Our changing world, or what's a reformed Republican to do?

2008-06-29T21:42:00.000-04:00

Our changing world, or what's a reformed Republican to do?

Funny, first I was a Democrat. High school, college, I was really liberal actually. My later in life Republican friends would have called me a tree-hugger (or worse). I wanted to save the environment, back before it became popular, or urgent.

Then I eventually got married, had some kids, and somehow got more conservative. I identified with the compassionate conservative, and forgot all about the world at large, focused as I was on my own little corner of it. I figured smarter people than me were paying attention to it, and they wouldn't let us down.

Then I woke up. From this horrible dream. Only it wasn't a dream. It was real.

June 3, 2008 - 'Arctic sea ice still on track for extreme melt' This is from the National Snow and Ice Data Center: http://nsidc.org/arcticseaicenews/

June 27, 2008 - 'Rising seas threat to coastal towns', from iol in South Africa

July 1, 2008 - 'Canary in a tux? Penguin woes signal problems; Research shows that global warming, ocean pollution present challenges' from MSNBC.com

June 28, 2008 - Arctic's First Ice-Free Summer Possible Even This Year

These are just a few examples of recent headlines.

And then of course, I finally saw An Inconvenient Truth, and the 1 year later followup that Al Gore put out.

I must say, wow, do I owe him an apology or what! I can't believe I was so blind to all of this. Sadly, so many people still are, and the news is out there. But too many people are not interested. They bury their heads in the sand.

Although it took me a long time, I am glad that I am not one of those people anymore. I have made a conscious effort to change my, and my families, impact on the
planet. We are starting with several small steps. A few things we are doing immediately to reduce our impact are simple and easy things to do.

We have begun to recycle - curbside isn't offered where we live, but we can take ours to recycling centers throughout our county on the weekends. It's amazing what that has done to reduce our trash each week. It's been more than cut in half!
Also, we put up a clothesline in our backyard and since the weather is nice (summertime :) I haven't used our dryer in two weeks. I'm interested to see how that affects our electric bill!
I have made a 3 week menu for the family, and am shopping in bulk and freezing much of what I can. We don't eat out much - I mostly cook from scratch. But we had been throwing away too many leftovers. We discovered that we can stretch one well cooked meal into about two extra nights of dinners for at least one or two of the family. So, I don't have to cook every night. If I cook 2 or 3 nights then we have leftovers for 2 or 3 nights. It has actually made my life easier. I'm also looking at creative ways to use fun summer meal leftovers. Like bbq chicken can be chopped up with red grapes and mayo and made into chicken salad, or sliced bbq chicken and layered with letuce and tomato and blue cheese on fresh bread for sandwiches. It cuts the number of times I use the stove or grill and saves me time too!

Like my blog says - small steps. But if each of us makes a few small steps, imagine what we can do. The cumulative power of those small steps can equal giant milestones. I've seen it with my kids as they learn and grow. I am an eternal optimist so I know I can see it with the human race. But we need committed leadership to help the recalcitrant. People have to want to make those small steps.

It's like watching a child in a therapy session. When it's something that's hard for that child to do, the therapist has to find a way to make the child want to work hard. Who really wants to get out of their comfort zone and push themselves? A good therapist finds the motivator for that child. Our leaders need to be like those good therapists. They need to find the motivators for people and businesses to become good care-takers of Planet Earth. And it takes small steps. Work on adding one or two little changes a week to your routine. You can feel the success easier with small steps. You get those to be second nature, and then add more small changes. Pretty soon you've made major changes and it wasn't as hard as you thought it would be.

Who's on your list?

2008-05-11T21:57:00.000-04:00

I've often wondered, when I hear husbands or wives complaining about their spouse. You know we joke about our "list" the 5 people who, if we ever actually met them, we could , you know, shag or something, and we couldn't get mad at the person.

But, seriously, to keep our relationship strong and healthy through the trials and tribulations of modern life, we are #1 on each other's lists. And we have fun with it. If we didn't (and there've been those times too) then we each suffer for it. My list of priorities got really switched around after Ellie was born. I was homeschooling her brother (which had already changed my list) but then DS became #1, followed by Ellie, and then came Alex and homeschooling, and then cooking and bills, then the house, somewhere in there I needed some sleep, and somewhere after that was my husband. He felt it too, and it drove a wedge in there. Eventually we talked a lot, and I rearranged my priorities and got some respite care for ellie and stopped homeschooling Alex, and started dating my husband again. I took time to make myself look as pretty as he always knew I was, and that made me feel better about myself too. Later I started working out again, and that really made me feel better, and look even better. That helped my hubby know in a concrete way that he was #1 too.

We stopped feeling like room mates and started feeling like lovers again. Although we couldn't recreate the beginnings of our relationship again, we could take it to new levels. The excitement you can have when there's a level of trust and committment that years of marriage bring to your relationship allows you to try anything. It's almost like having that new relationship excitement all over again.

I have to wonder, when I hear someone repeatedly complaining about their spouse. Have they mixed up their lists? I think if people worked even half as hard at keeping each other #1 where they started out, then there'd be more happy marriages. My mom used to tell me that marriage was hard work. Until we went through those times, I didn't quite understand. I wish more people would communicate with their spouses. We have such a great marriage now, and so much fun together, because we talked about those hard times and feelings. Forgiving each other allowed us to move forward. The fact that we don't entirely forget what we did and didn't do, keeps us honest and encourages us to work at keeping the right person at #1.

Of course we still have those other lists. So, if Captain Jack Harkness (from BBC's Torchwood) ever shows up on my door step ..... :)

.....just breathe.....

2008-05-11T21:47:00.000-04:00

good advice for anyone. Especially when you are freaking out about something. Like your telecom provider STILL goofing up your bill 5 months after you moved in. "No, I wanted to be in the One Bill program. I asked to be enrolled in it. How can you un-enroll me when I never was enrolled?????!!!!!" Ugh. (telecom rep) "I'm sorry I can't help you with that. Can I help you with anything else?" UGH!!!!!! As if! "Yes, please fail to help me with more things?!"

But, when that happens I try to remember the advice I give my husband, and most recently, my mother-in-law, "Just breathe". I remind my husband that I used to smoke primarily for that reason. I got to take a complete break from work; walk outside; and breathe. Now, granted I was inhaling toxic fumes! But, I was breathing deeply and that usually helps to clear your mind and calm you down. I remember missing that when I quit smoking. Of course, I didn't miss the yucky smell on everything i owned. I also enjoyed the increased lung capacity! It's amazing just how deeply you can breathe when you don't smoke :)

IEP - Doesn't it start with the Individual?

2008-05-07T00:49:00.000-04:00

So my 8 yo son wants to know? Why isn't his sister a member of her IEP team if she's the individual it's all about? Well, that is a great question. But not one the Virginia Department of Education probably wants to hear.

They have proposed changes to the State Regulations on IEPs. Some of these are very upsetting to parents of children with special needs. Like me. I was shocked to find that the State DOE wants to effectively remove parents from the IEP team. The school members of the IEP team can ..... I will ahve to finish this later. Life .....

all-nighter's - relieving the college years?

2008-03-21T01:22:00.000-04:00

technology has brought back my youth. now I have a reason to stay up late, way too late into the wee dark hours when the house creaks and groans in unforgiving ways. Just like my almost middle aged (won't admit it - ever!) body. Hmm. Let's google something to take our minds off that.

Sadly, it's like when you finally get to go on a date with your husband after months w/o. (should we even admit how many?????) What do you talk about? The kids. Of course. Don't we all :) And they are great kids. But, you got married for a reason that had nothing to do with kids. Even if the kids precede the marriage date, you still had fun together before the kids.

How to rebuild that fun? It's not as hard as searching for the fountain of youth. And it doesn't require a baby sitter. Just a lock on your door :) and the ability to step out of your every day, mom and dad, same stuff different day shoes.

We do have to remind ourselves about it though. Because, I'd say I'm pretty good at all of that, but.....here I am with a free night on my hands and what am I doing: I am googling mom and kid stuff. The issues in our own little world today: signing time, CogAT, moving with kids, etc. Where did all the exciting things of my youth go? I could google them, but first I need to remember where I put them. Someplace safe I'm sure.

But then there is light - I can always blog. it will force the stream of consciousness to clear out the old habits and allow the new ones to take hold. If only for a little while.

It's like when you are gardening. If you have an invasive weed that wants to take over your garden you must be vigilant, diligent in your weeding endeavors and gentle to your native plants. If not, you will destroy the fledgling native plants and be stuck with only the invasive ones.

moving. through the eyes of an 8 year old

2008-01-07T21:50:00.000-05:00

So, we've moved across the globe (Alaska to Virginia) - 4 time zones and major differences in temperature and amounts of daylight. Alex has started a new school and we've been in the new house for a month. We've gotten to do some fun things as a family over the last month, and we settled Alex into a (second) new school just today. We think this new school will be a great fit for him. So on the way home from school, I asked him how things were going and his answer surprised me.

"you know mom where we lived was like a best friend. I really understood and felt comfortable with my school and home and the area. It all fit me. I really liked living there. But I had to leave that friend and make a new friend. I like this new friend ok, but it's still a stranger to me."

step one.....

2007-04-07T02:52:00.000-04:00

As a newby blogger I feel compelled to start at the beginning. What you need to know for now is that I am Ellie's mom. 2 and 1/3 years ago, Ellie was born to my dear husband and me. She is the most beautiful baby girl, and the first time she saw me, she smiled. She melted my heart right then and there! That smile kept me going two days later when our pediatrician explained to me that he didn't want me to go home until Ellie was seen by the pediatric cardiologist. It was our pediatrician, and my O.B's belief that Ellie had trisomy-21 - aka Down Syndrome.

As devastating as the news was, it was softened by my pediatrician's presentation. I'm forever grateful that he presented the news in a wonderfully caring and positive way. He reminded us that Ellie was a baby first, and a person with trisomy 21 second. He also encouraged us to be positive in thinking about her future. He had worked with people with trisomy 21 and so he knew firsthand that they were individuals and very special.

Above was begun two days ago. But, that was then, this is now. Today is about Ellie's brother. "It's summer!" He says to me (while wearing snow boots!) as he requests permission to head off with his friends to the swings in the woods behind our house. They've been tromping around in the stream. Now that they are all wet, I suppose they should "cool off" by swinging. Understand: we live in Alaska! But, I guess at 54 degrees it does feel like summer after a few years of sub-zero winters. LOL!! We take what we can get, I guess.