Monday, September 10, 2012

two new specialties

As of this month, we are adding two more specialists to Mighty Max's team...neurodevelopmental clinic and the autism center. Yep, Max is going to be evaluated for the additional diagnosis of autism. Perhaps this expertise will provide much needed input into his behavior and communication.

"Autistic-like tendencies" are quite common for individuals with CHARGE Syndrome and Max is definitely no exception. But recently he seems to have really withdrawn even more and his OCD "quirks" are becoming more frequent. His communication has declined significantly and his behaviors have increased.

Quite heartbreaking to see such a decline in development. I know there will be an uphill soon...there has to be. It's a roller coaster ride, right?

Hoping I look back on this blog entry someday and joyfully realize how far we have come.

5 comments:

cadence and the state of the ark said...

SO much progress - brings tears to my eyes!! Ups and downs, for sure - sometimes at the very same time, even. Disorienting..... This, too, shall pass, and Max is still Max and you are still you. And I love you both. :-) Thinking of you.....

Kim said...

Amy,

What other stressors are there? Dylan's rating on autism treatment evaluation checklist has been as high as 99th percentile and as low as the 45th percentile. He is the same kid, but his function changes dramatically based on his internal systems and how well they are working that day, but also the external environment, expectations etc.

Good luck.

Kim

Kim said...

Amy,

What other stressors are there? Dylan's rating on autism treatment evaluation checklist has been as high as 99th percentile and as low as the 45th percentile. He is the same kid, but his function changes dramatically based on his internal systems and how well they are working that day, but also the external environment, expectations etc.

Good luck.

Kim

Carolyn said...

Max has come soooo far and this may just be a little pebble in the road. Love you both, Carolyn in WV

Carolyn said...

Max has come soooo far and this may just be a little pebble in the road. Love you both, Carolyn in WV