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)