Comments on: Change and Change Again

By: Bonnie Sayers

Bonnie Sayers — Thu, 24 Apr 2008 00:08:46 +0000

Nice to read of all the things that Charlie can now do for himself and by himself. Next month we are doing swim lessons for Nick since it has been hard to do with Matthew in tow, but once state testing is over that is on the list and then seeing an Orthodontist for braces and he needs another x ray to check into scoliosis.

By: We Go to the Met

We Go to the Met — Sun, 20 Apr 2008 18:39:56 +0000

[...] and to one that is not a designated children’s museum—and, of course, Jim was still out of town. There was some hollering and the usual looks: We just kept moving [...]

By: Kristina Chew, PhD

Kristina Chew, PhD — Sat, 19 Apr 2008 14:44:16 +0000

Thanks for all the kind words!

One of the scariest things for me when Charlie was just diagnosed and we were stumbling around trying to figure out what to do—-trying to drag ourselves out of the quicksand, thank you for noting that, Bink——was what would our day to day life be like? Would we always be stuck in the house or in our yard — would those be Charlie’s limits? I’ve been a reader all my life and have always spent a lot of free time with my head in a book: What would Charlie do all day without reading’s pleasures and lessons?

I guess these wonderings are a sign of my own limitations and limited experience. I’ve been fortunate that he’s helped me to walk into ones I would have been scared to try, without him.

By: Leanne

Leanne — Sat, 19 Apr 2008 14:21:44 +0000

I ditto what S.L. said.

I just wrote a post about a different kind of change. But back to your post. Patrick definately likes routine. Certain changes are ok and others are not. But of course he can’t tell us which are which. Transitions are difficult and I’m sure he’ll be very vocal when we can no longer carry him to bed at night.

I’m sure Jim will be very happy indeed to get those ‘hi dad’s’.

By: S.L.

S.L. — Sat, 19 Apr 2008 01:36:54 +0000

Another lovely post. I think one of the biggest myths about autism, is that autistic children don’t change, don’t make progress (unless they get ‘treatment’ for ‘recovery’). So many people do not realize that autistic children make progress, at their own pace and their own pattern. It has been the greatest gift watching both my girls blossom and change each year. With my youngest, it’s especially been a gift that I cherish every day.

By: Bink

Bink — Fri, 18 Apr 2008 23:16:57 +0000

Thanks for this post. Several sentences leapt out at me. Like, “the quicksand state when you know in your heart what the diagnosis is, but you have yet to connect the word to your child.” I remember that so clearly. It was a very hard time.

As the expression goes, the only way out is through.

By: wskrz

wskrz — Fri, 18 Apr 2008 22:30:54 +0000

We’ve had some issues with change with our little guy and sometimes he totally surprises us. He balks at the change of clothing seasons (long sleeves to short sleeves) but sometimes seems to thrive on the big changes, like trips. And sometimes it’s the trips that have us thinking that we’re going to be in for trouble when it’s often the complete opposite.

Thanks for this, Kristina. It’s good to hear that things do change, oftentimes for the better. It’s especially good to hear on rough days.

By: Autismville

Autismville — Fri, 18 Apr 2008 20:47:28 +0000

Your post gives me hope. Thank you for that …

By: Kristina Chew, PhD

Kristina Chew, PhD — Fri, 18 Apr 2008 20:29:34 +0000

Yes I have, thank you. That study being from the Autism Research Institute, which is closely associated with biomedical treatments and of course with the Defeat Autism Now! conferences and protocol, I’d think it would be good to know more about the parents and their views about autism causation and about autism more generally.

Not every medication we’ve tried for Charlie has been helpful—-some have been decidedly less than that. Through trial and error, we’ve found a combination that seems to help. Very best—-

By: liquid zeolite

liquid zeolite — Fri, 18 Apr 2008 18:24:46 +0000

Okay, just a thought. BTW, have you seen this autism parent study before:

http://www.autism.com/treatable/form34qr.htm#drugs

Input?