Thursday, May 28, 2009

Harnessing Happiness

Ethan is such a happy little guy. He has a sweet little disposition when things are going his way, or when grandma's and grandpa's are around. In so many ways he is just a typical preschooler. 

Then there are the ways in which he veers from the "normal" track, and for some reason I'm always sticking my nose (and my whole head) in that part of his business. You'd think by now I'd learn to relax and chill a little bit. 

The autistim symptoms Ethan has seem to be on full display these days. He can spend all day just walking around and looking at objects from different points of view. Lately he likes to put a book on the kitchen table and walk all the way around the table while looking at it from the different vantage points. He does this with many of his toys, that or he lines them up. He has also been obsessing over something in the hallway at school and will spend the majority of his day trying to see it and the teacher's are at wits end with him. They can't get him to focus on anything because he just can't stop himself from looking at the beloved object: a motor powered wheel-chair. The obsession is seriously hindering his education at this point. What bewilders all of us is the fact that the cart has been out in the hallway all year and he is just developing the obsession now after all these months. 

There are a few more signs of autism that we see pretty consistently, but those I just mentioned are the ones that are most prevalent. He has also started to do a strange eye rolling that looks suspiciously like a seizure of some sort and he has a very high risk of developing seizures. So if it isn't autism I'm worried about it's seizures. 

I'm constantly working on finding a mindset that allows me to acknowledge these issues yet somehow manage to just enjoy my child. He'll only be this age once and the time is passing us by so quickly. It's a dance, this living in reality and doing the research and work needed to keep him on track. I have never had the slightest desire to go in denial mode as it does Ethan absolutely no good. So here I am in all my glory it seems, full-on acceptance of that which is real and wondering what I can do about it. 


His sleep study looked normal. They primarily looked at his breathing to rule out apnea or any other pulmonary disorders and he's free and clear. Yay for that!

We've been gearing up for summer as next week will be Ethan's last at school. I'm creating social stories and a picture schedule to get us through the days and all the transitions that will surely be part of his new found freedom. I've met with his teacher to discuss the items that he will need to work on over the summer in order to avoid slipping back. He is doing remarkably well in the area of literacy (bordering on hyperlexia, an autistic feature) and number awareness. His fine motor skills are significantly delayed, so that's where we'll spend the bulk of our time. He continues to make progress with gross motor but is still unable to pedal his bike. We're not sure if that is due in part to his cerebral palsy or to limb apraxia. He'll figure it out though and when he does I'll be exchanging the sandals in for a fine pair of running shoes. 

6 comments:

Laurie said...

Good to hear an update from your house....you have a sweet & cute little guy! When he is ready to move to the next step, I'm sure he will make good progress! Hang in there!

KC said...

Darling, he is absolutely precious in every single way, that boy. Him studying the angles....seems so endearing and lovely.

Kyla said...

At his age, KayTar was also exhibiting a lot of autistic characteristics, she actually scored as autistic on one of her district evals and I think it might even be listed as one of her impairments! (I should know that, right? but they said it at the ARD and forgot to ask if it was written on her paperwork!) She's changed so much since then, but she's still definitely got the hyperlexia happening!

She also did a weird eye rolling thing (I can't find the video on my blog right now, though) that she seems to have outgrown at this point. We were really concerned about them being seizures, especially in light of her episodes, but they seem to have gone away on their own.

It is rough, having so many questions and not enough answers. I know. Hang in there, just like you always do.

leah said...

I hope there are no seizures and that this is another phase that can be worked through. Good news on the sleep study results, though it doesn't help solve the sleeping problems when you don't really have a cause for them!

It is so hard when you don't really know what is going on- primarly because it makes potential problems hard to address!

Thanks for hte heads-up on hte "Just Take a Bite" book. I am going to look for it, because I really want to get Nolan to gain weight without medical intervention. Darn those texture issues!!

Aliki2006 said...

I'm sorry there are these difficult, worrisome things going on. If this makes you feel better, though, we know that with L. his autism seems to cycle through more intense patches and then more "normal" ones. He definitely goes through periods of intense perseveration and behavior tics that we always worry about, then they are followed by smoother normal periods. So just because E. is going through this phase now doesn't mean this will be the new normal from here on out.

It could be E.'s eye-rolling is a type of "stim" or repetitive behavior he just finds comforting and routine. I would worry too, though, so I know what you mean. Hang in there--it's always a roller coaster and sometimes the worrisome patches overshadow the better times.

Val said...

are you familiar w/Amy, she may be of help here:
www.growing-fruit.blogspot.com