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. 

Monday, May 04, 2009

Sleep, it does a body good.

Totally hamming it up.


Ham Central.

Ethan has been getting some sleep lately, the kind of deep sleep that goes a long way towards helping his development. I say this because we've seen some really neat growth in his speech and language and it has coincided rather nicely with his increase in restful sleep. 

For instance:
  • Spontaneously signed and said "I want a muffin" at breakfast time. First spontaneous sentence! 
  • When asked where he found a bath toy that he brought into the kitchen he replied "Bathroom" in speech (no sign). First time ever answering a question! And he was right! 
  • When asked what happened to his glasses, he opened the trash can lid and pointed. They were sitting right where he apparently left them! 
  • While hugging a tree in the yard he signed and said "I like trees."  I remember practicing that phrase with him a few times in the car last week, but this totally appropriate and spontaneous use of the phrase really blew me away. He's making comments now! (I didn't teach him to hug trees though.)

When we moved here, less than 1 year ago, Ethan was totally nonverbal. He has been signing since the age of 10 months, but now he's putting multiple signs together and making attempts at speech along with the sign. Seeing him put it all together is so rewarding...there are no words really. We're actually beginning to communicate with our son. It's huge.

The only downer is that I am worried that he might be developing nightmares/terrors as a side effect of the sleep meds. I'm keeping an eye on it and we may have to switch medications. For now I'm just trying to focus on the positive experience that is getting a good night's sleep. It's new to Ethan entirely and it's something I haven't experienced since pre-pregnancy. 

Oh wait, I did get good sleep in New Mexico a few weeks ago! Rich held down the fort and I had a totally relaxing and amazing weekend with long lost friends. Life is good.