Friday, October 2, 2009

Bowling Was the Greatest Educational Experience Ever

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.

Thursday, August 20, 2009

What's your #? Mine is 9693

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 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.

Thursday, July 9, 2009

Will you say Hi?

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

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

Wednesday, July 8, 2009

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

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.

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!

Wednesday, June 24, 2009

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

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.

Friday, June 19, 2009

"All who wander are not lost"

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.

Sunday, June 14, 2009

Long Course Swimming . . . Long Steps Forward

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.

Friday, May 29, 2009

They grow up so fast

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!

Thursday, May 21, 2009

Early Intervention - who is it really for?

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.

Friday, May 8, 2009

"I want popcorn"

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.

Friday, May 1, 2009

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

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:
  1. have an OT observation
  2. get results in a meeting
  3. if results say eval is a good idea - agree in writing to eval
  4. have eval
  5. get results in a meeting
  6. if results say ot is a good idea then agree to it in writing
  7. 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)

Sunday, April 26, 2009

When I wasn't looking, she took more steps

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.

Saturday, April 25, 2009

One Giant Leap for Ellie Kind

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.....

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.

Wednesday, April 8, 2009

Technology is Good

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!

Monday, April 6, 2009

Favorite Color is .......

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!

Sunday, March 29, 2009

Not a Joke

(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.

Thursday, March 26, 2009

One Big Step Today

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".

Saturday, March 21, 2009

Signs of Spring

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!

Wednesday, March 11, 2009

To Whom it may concern

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.

Sunday, February 22, 2009

Estate Planning - Or should we call it Procrastination Planning?

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.

Friday, February 20, 2009

Weird Conjunction of Events

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

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!

Wednesday, February 18, 2009

Private Therapy vs. School Therapy vs. No Therapy

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.

Wednesday, February 11, 2009

Bring Out Yer Dead!

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."


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.

Sunday, February 8, 2009

In Memory of Dr. Cohen

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.

Monday, January 12, 2009

Entering the Internet is like...

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.

Sunday, January 11, 2009

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

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

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.