Friday, July 23, 2010


This is Rich and I enjoying a relaxing morning in Honolulu, Hawaii. He had to go there for work and I tagged along compliments of frequent flyer mileage. You can't beat a paid vacation with free travel and hotel! It was absolutely gorgeous! Having time off in paradise is about as good as good gets. (Thanks Grandma's and Grandpa's!)

Ethan has been attending a summer program at the center for autism at our Children's Hospital and that has been going pretty well. He is one of 3 kids in the class with 3 teachers, so he gets one on one the entire time and is doing really well as a result. They are using his IEP goals to direct his learning all in an effort to ensure that he doesn't lose skills over the summer. That is a huge concern for many kids on the autism spectrum, but Ethan is showing some strengths here. His teacher recently said "He's the smartest 4 year old I've ever seen!", which was so nice to hear since so much of what I hear about are his areas that are weak and need more work and attention. Plus, the psychologist who diagnosed him with autism also did an IQ test (which I would not recommend to anyone) and the news was very grim. It took me weeks to rebound from that experience and now here we are, having our instincts validated by educational professionals. I could rant on and on about the IQ stuff, but it's useless. The bottom line (for me anyway) is that you can't get an accurate IQ on an autistic child. Period. Throw deafness in the mix and you're really wasting your time.

He has also been refusing to wear his implants for about 4 weeks now, he gets incredibly anxious and upset if you attempt to turn them on. He's wearing them in the off position, and he makes sure they aren't on before you place them on his ears. I'm not sure what this is all about, but there is little we can do other than follow his lead. I'm so glad he has such a robust background in ASL and that I am also able to sign just about anything I need to say to him. Those 2 years in a deaf school gave us both a solid foundation. He is going to start using an interpreter in his summer program next week, so we'll see how that goes. I think he is too young to understand that an interpreter is talking for someone else, but this is the type of setting and atmosphere where I think they have the space to be creative and make it work.

I've been working on a committee at our Children's Hospital to develop a training for the customer service reps. A few months ago, I suggested to our family advisory council that these reps could use some sensitivity training on how to deal with patients and families living with developmental disabilities - autism in particular. They took it to heart and now there is a mandatory training happening that I helped design. I'll be opening the session with a speech about the challenges in raising a child with autism and the difficulties of going to appointments at the hospital. It has been so rewarding to be able to put my experiences to work in a way that will hopefully change things for other families in our position in the future. I have also really enjoyed the time out of the role of mom and in the role of adult person with a contribution to make to society. Maybe there will be a job in this for me someday!

We're really looking forward to Ethan starting his new school and he'll also be involved in hippotherapy in the fall as well. That means he'll be riding horses with an occupational and physical therapist guiding him. It's supposed to work on strength (core and limb) and the program they have in place for autistic children has been known to really help these kids.

So even with a couple of setbacks in motion, I can't help but look forward to the days and weeks to come. I have that trip to Hawaii to thank for that.