Comments on: What Was Your Burning Question?

By: Joy

Joy — Wed, 05 Dec 2007 19:54:40 +0000

My burning question mirrors yours….What now? How can we help him? It’s overwhelming many times but like you have said in the past, one day at a time.

By: Casdok

Casdok — Wed, 05 Dec 2007 16:56:13 +0000

Tough one. I suppose mine is What can i do to help C be happy.

By: Maizie

Maizie — Wed, 05 Dec 2007 15:42:07 +0000

We have been giving many many different diagnosises for Maizie. So, with each one I just kept thinking, “Is this really right? This does not seem right. What else is going on here?”
With each doctor I just knew something was not being discovered. Eventually once her seizure disorder was diagnosed after suffering five to six a day we went on to the next question. She fits autism but why does she have so many extra health problems? Things still did not fit and we wanted more answers. Doctor after doctor kept telling us to accept the autism diagnosis, or bipolar or mental retardation …..each doctor believed something different. Finally we got our insurance to cover going to the Cleveland Clinic where she was found to have a chromosome disorder and fit the diagnosis for Autism. For the first time we felt like we had some answers but once again we began to ask, “What else is going on here? What can we do to help her feel better?”
There has never been a point where the diagnosis felt like a definite answer to us.

By: Jen P

Jen P — Wed, 05 Dec 2007 13:46:59 +0000

“How Much?” $ure i$ a que$tion we a$k at our hou$e too. $igh….

Elissa-email me directly, I have a question for you.

By: fw2

fw2 — Wed, 05 Dec 2007 13:30:42 +0000

“What’s next”?? - is a discussion my FSW (family support worker for children with disabilities) had just last week. And FINALLY they are making up pamphlets to go to the Dr’s offices in our area to give parents a place to start.

“How much??” - depends on what your end goals are. I don’t believe there is such a thing as too much speech and OT. I also have no use for formal ABA/IBI - been there…

“How much?” is a personal decision.

6 years later you wonder why it seemed so overwhelming at the beginning… promise… it either gets easier or you learn to adapt quicker.

By: Elissa

Elissa — Wed, 05 Dec 2007 03:09:58 +0000

Jen P - “When?” is another big burning question - just like “What Now?” there is so much weighing on it!

Laura - “How much?” is something we’ve been trying to work out ourselves over the last few months. We’ve found it really hard to get that balance in regard to therapies and treatments. A couple of times we have come to the point where we simply stop everything just in order to re-group on where we’re heading.

By: Laura

Laura — Wed, 05 Dec 2007 02:38:02 +0000

My daughter does not yet have an ASD diagnosis, but we’ve been through OT 3x a week for a 18 months (she’s 3) due to the developmental delays and indicators of possible autism. I have done hours of research and am always asking “now what” or “who can help with x,y, or z” but the burning question for me lately has been “how much?” As in, how much do I push for therapy, treatments, etc, and how much do/should I accept as what just is or will be.

By: Jen P

Jen P — Wed, 05 Dec 2007 00:43:22 +0000

“Now What?”
That is a huge question that burns in my mind all the time, because you know there is always something.

The other burning question is
“When?”