And So It Begins

I live in my own world enough that I am actually proud of Charlie’s accomplishments–I’m proud that he can commando crawl, that he feeds himself peanut butter and jelly sandwiches, and that he can adjust his headphones with the accuracy of Mariah Carey in the recording studio.

I realize that these aren’t as fabulous as talking or walking, but as compared to brain dead, I think they’re pretty flippin amazing.

As we begin the process of enrolling Charlie in Early Intervention preschool, however, I realize that I will be forced to accept that the rest of the world might not be as impressed as I am.

Filling out the General Information Sheet has proven to be a bit a problem.

I did OK with stuff like my name, my husband’s occupation, and our ages. I started to get a little stumped after that, though.

They gave me half a line to describe “complications during pregnancy.” I got a similar amount of space to list Charlie doctors. Even taking up all the available vertical space, I still ended up scribbling in the margin.
The question, “Has your child had any serious illnesses, accidents, or hospitalizations?” I mean, besides birth? Illness? Epilepsy. Hydrocephalus, and Cerebral Palsy aren’t really illnesses.
The section on Developmental Milestones was especially humorous. They instructed us to write the age our child first achieved the following milestones: Sat alone, crawled, walked, potty trained.

I just left it blank.

My favorite section was the one on speech.
“When and by whom was your child’s speech problem first noticed?”
It would be difficult to know exactly when we first noticed his speech problems as he’s never really spoken a word.

And so the next part of the journey begins–school, special education, and all the things that come along with it. I’m not convinced that this is the perfect solution for Charlie, but I am convinced that we need to try it. This is just the first step in getting him enrolled for August. It seems far away, but it will be here before I know it.
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  1. Charlie's commando crawling is MORE impressive, not less, than other children's walking. I am continually amazed by you and Charlie and what you have accomplished. You seem to be so grounded, so in tune with what he needs and how to navigate this world. I have complete faith in your ability to take on schooling. I really do.

  2. Those forms can be ridiculous. And, like Erin says, his commando crawling is AWESOME. Because it shows he is motivated to get around. And because he CAN get around. And he's bright. A good teacher will be able to see that right off bat. People WILL see Charlie's awesomeness, rest assured, even if it's not obvious on paper. I've always looked at the paperwork this way: if Max seems worse on paper, that means he can get more help/therapy, and the more therapy he can get, the better.

  3. Stupid forms…they leave no room for individuality. You should be proud of how far Charlie has come–forms be damned!

  4. Every time I go for a Ped appointment I am reminded of these so called Milestones, we celebrate Inchstones in our house. I agree with Ellen if the on paper diagnosis gets him more help then go for it!!

  5. Good luck dealing with preschool stuff. Forms are always so difficult b/c all their questions are so "one size fits all."
    I like the bottom picture a lot. Charlie is giving you his best Blue Steel! :)

  6. I hate forms and evaluations. I know she is delayed, I live with her. I would have to be blind not to see it.

    But seeing the numbers in black and white feels like I was kicked in the stomach. She had a VMI (visual motor index) done last year. She scored in the 2 year range. She was 6. i also had a 2 year at home.

    he's doing great and come so far. School can be hard.

  7. Preschool is quite scary to think about…we'll be right there with you come August.

    And who creates those damn forms anyways??

  8. Awe Katy,
    I hate stuff like that. When Faith went for her 6 yr well child the nurse just said.."well, I am going to leave all this stuff blank"…meaning the developmental questions. I was like "Hey, she did do some of those things and I want it documented!" I am sure that this road is going to be a long one with many twists and turns. I hope that it goes as smoothly as possible for you guys. Hey commando crawling is a big marker, really! Faith started her version when she was about 2 1/2…left leg dragging, though. She did it for about a year some change before she could hop.

  9. Oh, I remember those forms… and am still filling them out, and leaving LOTS of blank spaces to this day.

    I still want to laugh at the request to list the names and dates of all his surgeries… 'cause I can't remember them all.

  10. I hate those kind of forms. I still fill them out for A. After all these years it is hard to do it, and not want to write a book and not want to rip the thing to shreds at the same time.

    And I am jealous, Charlie crawls! :-) A has not done that, he can push himself with his feet in his wheelchair, but no crawling.

  11. I couldn't find a clip online, but I am hoping by chance you saw a small feature on the Canadian Mogul gold metal winner Alexandre Bilodeau. It was a beautiful piece about how his older brother who has CP is his inspiration and who has taught him determination.

    Made me think of Charlie and his future and imagine and wonder who's life he will inspire.

  12. I love those forms–I would really rather burn them than fill another one out!

    And even though I've become a homeschooling nut, I think it's definitely the right thing to at least give it a go–Charlie may soak it up like a sponge and blossom in ways you never imagined!

  13. Those forms are used for all levels of issues — from the mild to the extreme. When I was filling out Luke's I just LOVED that I couldn't fill in a large amount of it. He was adopted at 27-months and I was filling them out at about 31 to 32-months (if I remember right) There is NO family history. Interestingly, this hasn't affected his education one bit.

    Unfortunately, he has more than made up for that mostly empty form. On his IEP present level there is a whole paragraph outlining his medical stuff, and there isn't enough room on the nurse/emergency form to put the answers they are asking. Oh well — life and school still go on.

  14. Gina (Mannyed) says:

    are you allowed to attach an additional sheet? I love how they use a standard form and expect every single child to fall within its parameters.

  15. I know Charlie and Anna are not just alike but I was hoping to send some encouragement your way. The forms, well, they can go to hell and so cant he producers of those forms. I digress… We started Anna in daycare (but a daycare that does a lot of preschool type things). I was terrified to say the least. I was not sure the people there would know how to handle her and that she would know how to handle them. She has been there since the first week of January and I have been amazed at the progress she has made. They have really embraced her and her differences there. Anna feels so "grown up" there and wants to do what the other kids are doing and I have seen real growth in her speecha nd skills. She is still in the 18 month old class but that's ok with me. She is happy and when we drop her off in the morning she never sheds a tear but instead waves bye, gives me a kiss, and motions for me to head out the door. I hope that Charlie's experience will be much like Anna's and that it will be good for him. I have to say that having her gone for a few hours a day has been good for me too! Then when she is home I am even more motivated and rested to be able to help her. Take a deep breath and know that his commando crawling is motivation in motion that Charlie is awesome!

  16. Nadine Hightower says:

    I think I would do what I could with the standard form and then sit down with a "teacher" or "therapist"… whatever you call "those that run this Place" to give a more pointed and exact account of Charlie's training up to this point.
    You have dealt with those sort of forms on the other side of the table. All children are different and have different needs that should be addressed in a one on one conference.

    He will do well. I just know it.

  17. I hate feeling out paperwork. I hate it even more when they come to asses Jude every year. Everything is left blank on his, it's depressing!

  18. Baylee and Blair's page says:

    Everything that he learns or does is impressive! He is such a little miracle and you are SUCH a wonderful Momma for providing the BEST care for him!

    Those forms are ridiculous, but don't let it get you down! It's just part of the process to get him in and he will love it once he starts going! They will LOVE him… just like we do!

    Hugs – Tiff

  19. He is precious! I just wanna give him a hug! I truly understand what you're going through. Sometimes Joe's development seems painfully slow. I think adjusting to having a child with special needs (or whatever you want to call it) is an ongoing process. The transition paperwork that we had to fill out was too much for me. I had to pass the buck to my husband because I knew that I'd fall apart and be thoroughly depressed if I had to be reminded question after question of all the things that Joe cannot do and we have no idea if/when some of those things will happen. Its all a work in progress. Keep loving and supporting him and he'll continue to bring you both challenges and joys.