Monday, February 15, 2010

1840 Part Two

This is the post I'd have written first if I were a better person... sigh...

My son got his SAT scores this week and there is a crowd of people I should share that with--because of the help and support they gave. There were some notable stinkers who I really want to TEACH (not slap, teach!) about kids and their potential. In the beginning believers were few and far between--but remarkable--and in recent years there have been more and more.

I would start with our family--we have a large and diverse family who have always seen Tom as having potential. I know a woman with a son not unlike Tom in many ways whose family treats him... badly. We are lucky and I am grateful.

Then there was Jenn's OT. I went for quite a while with a stomach ache about why Tom couldn't zip a zipper. I had an OT in my house every week, but she was there for Jenn. One day I finally did ask and she was really helpful. Gave me some ideas, language to use when talking to professionals and strategies for building progress (lots of crawling... tunnels, etc...)

I would also have to thank the Down syndrome community because they taught us enough about living with disability that we were ready to go when Tom was diagnosed. The Advocacy Center in our town who teaches advocacy skills gave me the understanding of the systems that were available and how to access them--great allies to have!

The developmental pediatrician who evaluated him, and then took my tearful call when the literature she gave me said that my son had a sad and limited prognosis. She told me outright not to believe that. She said to use his language strengths to meet his other needs, build accommodations when needed and NEVER give up. She told me to think about what early literature said about people with Down syndrome and what they believe now... Be informed by the literature, then use that information to build the life he wants.

This developmental pediatrician moved away some years ago--wherever she is, they are lucky to have her.

I would thank Mrs. T. from one of the children's programs in our area. They used to offer little 'courses' about science: under the sea, geology, anmimals, etc. Tom loved that stuff so I put him in one that did not work AT ALL. He was with all girls and they made little pictures and crafts all class. I picked him up and he had this little wrinkle in his forehead that didn't go away for hours. I spoke with the program director who moved him Mrs. T's class because Mrs T. had an 'active teaching style' (aka WILD!) What a difference! Lots of facts, lots to do and see and touch, much to learn. Those classes turned a lightbulb on in Tom. Love of learning was ignited and has stayed with him.

While gradeschool was often frustrating there were always members of Tom's team who were believers--thank heavens! The naysayers were tough but never got the power they could have had because there were others asking questions or pointing out that he did always handle CERTAIN things fine... They kept the momentum going and I thank them.

I want to thank a guy named Bruce. He was part of a consulting group--two men who taught school and also did consulting work. They taught companies to use the potential of their worker and they taught presentation skills (probably among other things, but I really don't know.) I was at a presentation on presentation. They talked a lot about different types of learners and in one of the breaks I was having a conversation with Bruce and something he said made me think about my son. I mentioned that he was considered distractable, did terrible taking notes, etc, but then he would ace tests and frustrate his teachers to no end. He said, "Maybe he just can't produce output and take in input at the same time--see, no one talks to him when he's taking a test. Many people can't juggle."

Best thought ever! Perfect description for a kid he'd never met. Perfect timing too.

7th grade. When taking notes becomes very important. I took that back to Tom's team and that phrase set everyone free. He became one of the better students. A couple teachers even called him a favorite. (He does also have a very strong auditory memory which works in his favor.)

The school psychologist who evaluated him for his last triennial was amazing. She called me part way through testing to ask if she could do a couple more tests with Tom because she had never seen his learning pattern before--and she had already discussed this with him and he was interested too. I said sure! She gave us the best profile about Tom and his learning and thinking skills--and needs. She laid it all out for him beautifully. She told him he would have to manage things always to be successful, but that MANY portions of the world are wide open for him. She explained and answered Tom's questions--he's walked a little taller ever since.

He told me after that he always HOPED he would be ok, and BELIEVED he would, but now he thought he WAS.

Want to see your mom cry? Tell her that.

The junior high and senior high teachers in our district are also extraordinary. A lot of them read the paperwork and worry about having Tom in their class, but to a person they have all come around once they got to know him. He thinks his classes are interesting... I think they appreciate that. (He is a teenager and doesn't always make the best choices about everything, but they quickly learn the difference between a learning issue and a bad choice!)

And the special education teachers in our Junior and Senior High Schools are amazing. Tom got an IEP in 7th grade. The special ed teachers consult with his teachers and work with his accommodations. This means, among other things, that they sit for HOURS proctoring the exams where he gets extra time.

I spoke to one of them about that once and she told me that extra time doesn't help if a kid needs to know more, only if they need to produce more. And that's Tom. Processing time and the mechanics of production are slowed (though keyboarding is certainly faster than handwriting.) This teacher told me she LIKES working with Tom because when they put the accommodation in place he performs... She said that's what she went to school for.

And most of all credit goes to Tom himself. He keeps on keepin' on, no matter what people say to him, whether they work for him or against. He learns and grows and keeps going... Congrats Kid, You did good!

This is a score. Not a guarantee of an easy life or productive carreer. NVLD doesn't go away and I know that, but it is a step toward a carreer that interests Tom... and maybe a bit of a sign that some of the things we have learned along the way about NVLD have been right--at least in how they affect my son.


rickismom said...

Interesting why we always remember the stinkers so clear, and the thank-yous less so!

Terri said...

Yes. Pain has that effect!

thecatsmeow said... just about wrote my story in that post! (Well, at least the NLD experience part of it...) I have the stinkers and the great ones, too, all through my life. The attempts at college alone could produce quite a saga! Though the earlier years were no picnic, either, they happened before I got any sort of formal diagnosis. I don't know if that says something about the inadequacies of the educational system at the time, about the my ability to overcompensate, or both! (Ok, I'll stop that NLDish tendency to ramble now...LOL!)

is Autism a Genetic Flaw? said...

Thanks for sharing your latest pains that autism can bring to parents.

Terri said...

Thank you for your comment. My son doesn't actually have an autism diagnosis. Though I have heard that some people see NVLD as part of the autism spectrum, that has never been said by any of the people that have worked with my son.

I intended this post to be about the awesome support that my son has received... the earlier comment was because I'd posted my defiant post about my son's success first--my reference to pain was a poor attempt at humor.

Admittedly, there has been some work involved in getting certain people to see my son's strengths. And there have been very frustrating seasons when negative people were in positions of power in his life. But whatever "pain" there has been has paid off in a lot of ways.

Anonymous said...

NVLD is a frontier and you are so lucky to have the teachers and testing that you've described! This is an inspiring post and I'm so happy for you and your son!

Terena said...

Congratulations! That is wonderful! All that hard work, and so much support to help him on along the way. Thank you for sharing the good news.

Karen Rothfus said...

Terri, How proud I am of Tom.... as you know his successes are close to my heart as it allows me to see the future of my son. However, I have one beef. You have not included yourself in the list of those who have led the way for your son. You are an amazing component also in this equation. Every time I am panicked over how to teach a new concept to Keaton you come to my rescue by offering the perfect solution. I know you have refined your ideas through your quest to help Tom. So this kudos goes to both you and Tom for your amazing work.

Terri said...

Thank you all! I am pretty excited. He got accepted into the schools he wanted. We went to a presentation that had a panel of college students with learning disabilities last week. They gave him some good ideas, I think. Now he has to decide (by May 1.)

Thank you for your kind words--I admit to some hands-on advocacy over the years, and I have learned a few things along the way... so glad you find them helpful!