What Was Your Burning Question?
How can it be?
Why?
What does this mean?
How do I know?
But… what do I do now??
As we move closer towards the end of the year, we find that we often spend time reflecting on the events of the year just gone. 2007 has been a huge year for us as a family - one that has seen us tackle many new challenges, and grow incredibly in strength and personal ‘understanding’.
We were talking last night, reflecting on the diagnosis of Autism Spectrum Disorder - a big part of our learning curve this year. And one thing that we debated was - “What was the biggest question?”, or as Steve put it “What was the ‘burning’ question?” We spent a long time thinking over all that we had struggled to come to terms with throughout our journey to ASD diagnosis and decided that our most ‘burning’ question was - “What do we do now?”
It’s funny, when you deal with specialists ‘diagnosing’ your child you’re provided with plenty of ‘this is what autism is’ information, but then once you’ve kind of worked out how the symptoms fit with your child, it often feels like the really hard stuff is let to sit - or referred on to someone else!
It has taken us a long time to start to find the answers to “What do we do now?”
And even now, when faced with a list of ‘what we should do now’, it becomes “What do we do first?”
So what was your ‘burning’ question that came with (or without) the diagnosis? We’d love to know…
December 5th, 2007 at 12:43 am
“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?”
December 5th, 2007 at 2:38 am
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.
December 5th, 2007 at 3:09 am
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.
December 5th, 2007 at 1:30 pm
“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.
S.
December 5th, 2007 at 1:46 pm
“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.
December 5th, 2007 at 3:42 pm
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.
December 5th, 2007 at 4:56 pm
Tough one. I suppose mine is What can i do to help C be happy.
December 5th, 2007 at 7:54 pm
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.