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.


Kyla said...

Hooray for Hawaii!! His summer program sounds really cool. I think hippotherapy sounds awesome, but KayTar would lose her shit on a horse...she can barely deal with a swing!

Cheryl said...

Hawaii sounded just what you and Rich needed. I love that picture of the two of you!

There are so many positive things going on in Ethan's world right now, that it is really exciting. Trust those instincts, not some ridiculous IQ test. You know him better than any "Professional." Not surprising that he is the smartest 4 year old she has ever worked with.

I love the horse therapy. We have that up here and it has done wonders with kids, on so many levels. I think you have so many great things in place and are on the right path.

I love that you are going to speak/advocate, what a huge help you can be to other parents. Look how far you have come. I think you could write a book! Seriously.

You are an amazing mother Heather (and person) and Ethan is one amazing little guy, who is just starting to show what he can do and knows. You'll see.
Love you!!!!

Kristina said...

It's great that you got a chance to get away and relax before the flurry of Fall activity starts again. As usual, it seems like you are on top of things and adjusting the game plan when it makes sense.

And, I'm incredibly excited for you and your hospital that you are on the input committee. How fantastic for them to have you!

Lisa said...

I'm so glad that you are on the Parent Advisory Committee! What a positive change you are making.
I'm also really happy that you and Rich were able to get away and relax. When things get stressful, close your eyes and go back to that place... said...

What an amazingly full post! You sound like a very cool and inspiring mama. Thanks for your comment on my post at HP today. I appreciate it.

Ethan is adorable.

Aliki2006 said...

I love that photo! You guys are one good-looking couple!

It's good to get your sounds like things are up and down, but that's probably par for the course--I know exactly how that can be. Keep up the good and inspiring work!

Mama Deb said...

I hear you on the IQ testing. Fortunately, whenever that has come up for M, the teachers have said that they know they wouldn't get accurate results.
Glad he got to be a part of such a wonderful summer program...and even more glad that you and your husband got away to HI by yourselves!!