parades & carnivals

So we went to a carnival the other day. Johnny hasn't been to one since he was about a month and a half old, and back then I covered his little sensitive ears. Who wouldn't with a 6 week old baby? But on Saturday we went on down to old Boalsburg's Memorial Day Parade & Carnival. (They claim to be the birthplace of the holiday, along with 11 other towns in the U.S. -- did you know?) I was soooo impressed and proud of my little dude. There were several times when a baton group or the marching band went by that I knew were going to be hard for him noise wise, but I gave him plenty of heads-up when they started to approach and he did great! He covered his ears and screwed up his face, but no tantrum and no freaking out. I couldn't be more proud.

I'm the same way in that if you give me advanced warning, I am usually able to handle loud noise. However, I have never seen that in my son. And that's not the only thing I've been pleasantly surprised by with him this past weekend! When we were at the carnival, not only did he ride the carousel on the horse, (he usually insists on sitting on a bench that isn't high and doesn't move, but with this one there was no option of that) but he also rode the "dragon ride" that goes up and down and around in circles. I  expected it to scare the crap out of him and was anticipating having to tell the ride operator to shut it down 30 seconds into the ride, but he just grimaced and held on tight. When he got off he was just as happy with himself as I was.

Next was the fun house. With a good 10 kids stuck behind him while he moved at a snail's pace, he pushed onward and climbed up a very steep cargo net, went over a swinging bridge, and slid down the long and tall slide. When he came out at the bottom, he was so thrilled. "I DID IT!!!" Yes buddy, you did. You actually did. We did go on the big yellow slide, (one of those ones that stands like 3 stories high) but for some reason those ones never freak him out despite his height thing. My sister (the COTA) says that it is a depth perception thing when it comes to what he is willing to attempt most of the time. The big slide has stairs up that are so close together that there aren't any gaps. It looks like you're barely moving upward, and then when you are at the top, it is a long sloping decline. He can handle that, but he can't walk over a grate on the road. With the "dragon ride" he was in a large enclosed dragon-shaped seat that could have fit 3 of him. He couldn't really see the ground from where he was, only the movement of seeing me from eye level to having me disappear. Nevertheless, he wouldn't have gotten on the ride last summer with all the other kids his age.

So really, Johnny took a lot of bold steps this past weekend. He has been pushing up against the sides of his comfort zone. Proud mama, right here!

finally

After a year of pulling teeth to get any substantial help, I can finally breathe easy for a little bit. After having Johnny assessed and formally diagnosed, (finally!) my kid was accepted into a program called Stepping Stones. The program runs for 8 weeks of the summer and he will go for 3 hours a day, 5 days a week. I couldn't be more excited! Apparently starting this fall, they will extend the younger kid's program into a year-long thing. Before this, only the older kids had it, 2 days a week after school. I will have the option of keeping Johnny in the program from there on out or having him wait until next summer to rejoin. I am hoping to find a way to have him involved in both Stepping Stones and at Matternville Preschool when next year starts up. I think a complete transition away from his concept of "school" involving the teachers he knows and the friends he has made would be a bad idea. And if we are still living in the house we are at a year from now, he would continue on to kindergarten with several of the kids he is currently with when he hits our school district. I also think that sticking with Matternville half-day will help him in terms of remaining integrated with the traditional school group. Anyway, no matter what route we choose when September comes, I'VE GOT HELP FOR THE SUMMER! Between his new behavioral therapist that comes once a week and the summer camp, I no longer feel like we will be taking 10 steps back during the break.

Am I the only parent to ever be so excited about having something like this happen? Most parents I know would be upset to have their child diagnosed as autistic. I already knew, I just needed someone to formally confirm so that he could get the extra help he needs. And really, he isn't "less" than other kids in any way-- he is just wired differently. I can't imagine my world without him, just as he is! 

let's call the whole thing off

EI, IU, BSU, IEP... I don't know if the acronyms are all the same for everyone wherever they live, but I'm annoyed all the same. Not annoyed with the shortening of titles, but the fact that no one seems to want to help! Early Intervention is a program Johnny was involved with from the time he was only a few months old until he turned 3. It was wonderful: we had a general therapist, an occupational therapist, a physical therapist and a speech therapist for different points in his life where he needed help in each area. Then he got too old for the program and well... caput.

The Intermediate Unit is the next step up from Early Intervention, ages 3 through elementary school (I think?) and they are full of it. They will help anyone with cognitive or physical delays, but if the issue is emotional? You're out on your butt. "We don't give service for emotional issues... contact the BSU".

The Base Service Unit basically serves to kick people around to 20 different places, none of which are any more helpful than the last. (Specifically, they referred me back to the IU. Great!) Inevitably the "emotional" issues before a kid hits kindergarten just get ignored. So much for everyone stressing "the earlier you can intervene, the better for the child". Those exact same people are of no help.

Individualized Education Plans are for anyone with special needs... unless the kid is below kindergarten. Preschool IEPs are again cognitive or physical need based only. Once he hits the school district, Johnny will qualify for one and no one will bat an eye. For now? No help! Oh-- and what is more, his teachers would kill for him to get an IEP. They all think he needs one too!

If he had an IEP he could go to school all summer with the same program, same teachers as he has had. His new in-home behavioral therapist agrees with his teachers and I that it would make all the difference for Johnny to be able to stay there and keep with the routine and interaction with other kids. We all foresee a huge crash come the end of May when the bus stops coming by our house, and the beginning of next year bringing a noticeable setback in his emotional development. But hey-- kids under kindergarten age don't have emotions, remember?

To top it all off, no summer programs (in our town that is full to the brim of them) will accept a 4 year old who isn't potty trained. Never mind the fact that the reason he isn't potty trained is because he has Sensory Processing Disorder, and therefore they are discriminating against a disability. He doesn't have an IEP, so summer camps won't recognize the problem as legit.

I love the mental health system in this country.