Friday, September 12, 2008

The Short Bus

Before I had Carver evaluated the first time, almost a year ago, I had to prepare myself emotionally to hear potentially heart-breaking news. I wanted help badly enough to move ahead and really haven't looked back. I have felt excited and encouraged by our help, almost all the time.

Today I took him to be evaluated by the school district. The preschool is at a different elementary school than the one his sisters attend and I wandered around a little, trying to find the office. We did a vision/hearing screen first - wow! I had no idea they were so creative testing vision for non-communicative kiddos like Carver. She dropped red felt-like balls (like those fuzzy kind you get at craft stores) of various sizes, starting from golf-ball size down to a pea size and smaller. She watched to see if his eyes followed the drop. Interesting, huh? Then she had him point to dots of various sizes, each card had a smaller one than the one before. He found them all! So he passed that. The school psychologist met us there and led us back to the preschool area, the special ed portable.

It had low tables, kitchen toys, a room full of toys, even a TV and a couch. There were 3 women waiting for him, who all greeted him warmly and jumped right in to play/evaluate. One was a language pathologist, one was a physical therapist, the other was evaluating his cognitive abilities. I get the sense that this last one kind of makes some decisions about placement with teachers and whatnot. I can not say enough how wonderful each of them were. I have profound gratitude and respect for those who work in special ed, not only for the kids they bless every single day, but for the parents. It is an overwhelming feeling to see how these adults absolutely loved my son while we were there. Their patience and willingness to play with him and work with him on his terms was amazing. I watched a little of the evaluation, while the school psychologist got paperwork ready for me.

It was the same sorts of things I'd seen before. Asking him to string beads, make towers, point to pictures, identify pictures, catch a ball, throw a ball, jump off a chair, answer questions, use a marker, etc... The only surprise today was that he CAUGHT a rec ball one the first try! I was shocked. I had to tell them it's very unusual, don't give him too much credit for that! I answered some of their questions, as well. Then I filled out forms about his self-help abilities, social interactions, things that they can't see in a setting like this. That was hard because I want to be honest, but I know my perspective is skewed. Some areas I'm sure I gave him too much credit, some I probably short-changed him. That perfectionist in me is hard to shake, but I did the best I could. After all that, we reviewed the results with each specialist at a table while Carver had a snack.

Here's a generic example I found online of how it works (statistics 101), but also a little backwards in terminology. I'm going to focus on the left-hand side of the curve, representing delays in development. The middle sections "same as others" represent "average," then that next area labeled "probably" is called "moderately delayed" and is between -1.5 and -2 deviations from the norm. The "definitely" section on this curve is known as "severely delayed" or more than a -2 deviation.

His best area is social, which makes sense. He's incredibly social. Even in the normal range for his age, on the low end. Right around a -1.3 or so. But tested as a 3 year old, he might fall off into the moderate delay category. Everything else, gross motor, fine motor, expressive and receptive language was about -2 deviation or representing a "severe delay." To qualify for the preschool, you need to have 2 or more in the moderate section OR at least one severe delay. So he's definitely in!

We talked about preschool options a bit, they have two afternoon classes so the class size is smaller, but the younger kids (nappers) are usually in morning, so we're going to wait and see what they decide to do, based on personality of the classes and teachers and sizes and all that. I should hear from a teacher soon. Preschool is Mon-Thurs in either case. I'd prefer mornings since he IS still napping about half the time and because I really believe it'd be much more effective if he wasn't super grumpy. The bus WILL come to our house and get him, if I'm willing to do it. He has some issues with separation sometimes, but I really think he'd LOVE to be on a bus and that it's important for him to feel grown-up in that way.

I should be ecstatic. This is what I've been hoping for these last months. But instead, I came home and cried in the bathroom for a minute before going to pick up Ellie and Grace from my friend's house. And still, Melissa got to see me breakdown again after Ellie ran out to the car with Carver. I don't know what happened, but it all just hit me again. I've been so focused on getting him the help that he needs that it hadn't all sunk in til just then. I felt all that heartbreak for my little boy, that he can't do things that other 3 year olds can, that it might be a LONG time til he can read and tie his shoes and not drool. I hurt for the future that is still uncertain for him. They asked today if we'd done any neurological testing and indicated that after we get him settled in the preschool, it might be a good idea to run some tests and check for medical conditions causing his delays. I am prepared to do that, but it hurt to think of all the issues and struggles we haven't even faced yet.

He takes his chewy to the bus stop and kids ask almost every day (sometimes the same ones every day!) what it is, what it's for. He's going to ride "the short bus" and have special ed. He will wear a special suit under his clothes. The older he gets, the more he's falling behind. Will he always be labeled? Will he fit in with other kids? Will they be mean to him? Will he get the help he needs? Can I do this?!

I have been totally taken by surprise to feel this way and decided to let myself have a minute or two to cry and mourn for what we have missed and what won't be. But then I'm going to pick up where I left off and be the advocate that Carver needs, getting answers and help and loving this boy the best that I know how.


P. Roussel said...

Hi Rachael,
This is Patti Roussel(aka Aubrey's mom) I hope that you don't mind me writing to you, but Aubrey has been telling me about Carver. I don't know if you remember that we have a daughter, Torrey, who has multiple disabilities. She is nearly 20 year old now so we are very familiar with "The Short Bus" version of life. I would love to help you in anyway that I can, even if it is just to talk to someone who has already walked down the same email addy is ((HUGS))Siser R

Nichole said...

I just wanted to tell you about a small experience that I had with Carver. I think I came to your house with Gracie one day and when we knocked on the door, there was Carver looking out the window at us. Not a second passed by before he gave us the biggest grin right through his pacifier. I could just gaze at that great smile all day. His whole face lights up and it is beautiful! I think Carver has such a strong, strong spirit and he will take all these struggles and make them his strenghts! I truly admire you and your family and I hope you know that if you need anything, we are just across the street! Jackson is always looking for a little brother fix anyway! He loves to play with Carver.
Hang in there!
A word about letting the tears go...Debi said on her blog, "The cure for everything is salt water, tears, sweat and the sea." How true!

donna said...

I honestly don't know how we can help, but you know we would at any time and any way. I'm not working for nothing you know, if there are things you need and I can help, please, ask me.

You truly are my hero!

Alice Wills Gold said...


You can and you will.

I would love a little special needs kid...they are such special spirits and bless their famiies so way they really bless is giving their family members strength of character.

I can't imagine what you are going through, but I know how strong you are, and I know how loving you are, and I know how faithful you are and I know you will be just fine.

And so will he. Just will see.

An author wrote the version of her story with a special needs kid.

She compared it to visiting Holland instead of Italy...I have to find the story for you and let you know..i think it is telling and inspiring.

Hang in there. And just remember to love him! No matter how different he is or how the world sees him...those things don't matter...his sweet and valient spirit is what matters.

Alice Wills Gold said...

I posted about this story a while back. Read it.

cat said...

hi rachael, i have been meaning to write you for a while. this blog is such a good idea. my oldest freddy has SPD as well, and also has been diagnosed with aspergers/high functioning autism. he qualified for special needs and rode the "short bus" to preschool and all that. it is so scary thinking about their future, but early intervention can work miracles, i have been able to witness that. i would love to tell you more about freddy and how it gets SO much better and would love to hear more about carver. he is such a beautiful boy. being the parent of child with any type of special needs is so different, and you are pretty amazing with everything that you are doing. email me
love - cat