When I started writing this blog, I had hopes that I could
help other parents in the early stages of an Asperger’s diagnosis with regards to their children feel a little less overwhelmed and lost; maybe I could guide them down the Asperger's road a little bit. I realize that I haven’t done as much of the
explaining and paving of the road as I would have liked. Here’s why: There is no road.
When Presley’s
first-grade teacher and counselor first approached me with the thought that my
perfect, funny, brilliant daughter might have a “disorder”, I was floored. I
wanted to read all I could read and figure it out, but, the more I read the
more confused I was. The children in the books who were exhibiting
“characteristic Aspergerger’s traits” of outbursts and violent meltdowns were
nothing like my mild-mannered angel. I was horrified. I put the books down.
When we finally
accepted that this was really happening, we started the LOOOONG journey of
trying to get the proper documentation and diagnosis. That is probably the one
thing I have been able to document well during the course of our journey and
you can find that journey in my blogs, "The Sparks Experience I and II" and
"Catching Up". The diagnosis, although it
took nearly three years, a hunk of change out of our pockets and quite a few
tears from pretty much all of us, turned out to be the easy part. You pretty much have a limited choice of
doctors in your area (and by "your area" I mean within a couple hundred miles") who offer the needed tests and your pediatrician and/or
school can make the referral(s).
After that, the “What
now?” hits. What therapy does she need? Which doctors do we need to be seeing?
What about her schooling? Do we stay in the small, private school we love with
no IEPs or Special Education or move her to public school where the above is
offered but her world is upturned by the loss of the familiar friends who have
surrounded her since kindergarten? Homeschool? (Ummm….no. Please, God. Just no.
Not for us.) I wanted to find every doctor, therapist, group, or counselor who
could help her and FIX it NOW. What I found was that even if you do find the
very best counselor for what you are dealing with at the time, tomorrow may
present a whole new set of circumstances for you to deal with and then you
start all over. But isn’t that life for all of us, diagnosed or not? The best
advice I can give you if you are a parent stressing over if you are making the right decisions or not is what my friend and co-worker Connie told me was passed on to her
and I agree, “We make the best decision we can at the time with the information
we have on hand.” And also, “It’s ok to not have all the answers.” This last
bit of wisdom is my own…Because, honestly, even if you DO find the right
answer, tomorrow there is going to be a whole new question. Ex: our precious OT in Huntsville, Sharon, helped
TREMENDOUSLY with handwriting issues and shoe tying/self-care; but now we are
looking for a Math tutor who understands how Presley’s brain works and where
the answer is “getting stuck”, because we know she knows 9 x 9 = 81…so why the
tears?
I can tell you what
has and has not worked for us, which doctors we loved and which centers we won’t
waste our time with again, but in the end, your child and your journey is going
to be different than mine. What I'd like to tell you is:
1. Surround yourself with
positive, Godly people who will pray for you.
2. You, yourself, pray like CRAZY (with your spouse, if applicable).
3. Just keeping facing each challenge as it
arises, without letting them cause you to worry so much that you miss all the
fun, laughter, and joy that comes with a child designed just the way God meant
for them to be.
