Good morning friends,
I am on my way to Milwaukee tomorrow with friends today and yesterday
we had some extensive testing done with my sweet boy.
We want him to join a study for Autism that will help him relate and deal
with his peers better. So we drove into Nashville and spent the day being
hooked up to monitors, tested, and prodded.
As all this happened I was SHOCKED not at my son's reaction
or the actual tests but to my reaction.
I started out the day with my son in tow, dropping off my husband at work
so we could save money on gas. Then heading to the maze of medical
buildings and trying to find my way. In the mean time a friend of mine
called and asked how we were.
I explained that my son was nervous for the tests and she INSISTED
on meeting us in Nashville (40 minutes from her) and being there to
sit with us. I didn't think anything of it to be honest.
Never thought about anxiety or anything but making sure my son was OK.
We began and I left him in the room with the Dr. for a 2 hour and 45 minute test.
My friend showed up and we laughed and talked.
But the big test wasn't ready yet- the one with all the
electrodes and monitors for his head. He was extremely nervous about
this one. I shared a photo with him and that made it worse.
But they put it off, so we were relieved.
We rushed for a fast lunch because we were running behind, and
went to the next medical building for the big test.
This involved a few BIG Autism NO's for my son.
#1 Getting WET on his head and face.
Getting wet has been a HUGE issue since birth with Gage, it usually
sets him into hysterics. It is NO JOKE any Autism mom know there are
those certain points you just avoid at all costs and water is our point!
#2 Being covered in a hat.
What can I say the boys hates hats- or any reference to a hat. A visor
is a MAYBE but hat might literally kill him...it's that bad.
#3 Not knowing the Dr. helping him.
He needs to meet any Dr. we have ahead of time.
He just likes that security, He is ok with new people but not doctors.
I knew we had 3 bridges to cross. The Dr. one I had covered because I
explained I would be there. But the wet issues....well it was a bit much.
When they brought in the "wet hat" which would be NOTHING
to someone else looking in- I could hear and see the panic begin.
And to be perfectly honest seeing him panic does not help me.
I was THAT mom who held her baby because she could not handle the crying.
Hey I don't regret it either. It's just me.
So as he panicked he asked for his friend to come in and sit with him
and bless her little heart, she sat there for nearly an hour in what had
to be the most uncomfortable chair I have ever seem
This extraordinary girl from an extraordinary family
was like a Florence Nightingale no lie. What a blessing.
But here is where I surprised myself...seeing him all hooked up and them
putting all that on his little beautiful head....it got me. Right in the kisser.
I lost it...the tears came and my anxiety set in.
I wasn't expecting that....yes I know in my head it is ridiculous, it's simple
painless test. But every one of those little patches represented all those steps
we have taken- all the endless steps we have to yet take...those journeys we have to
go through, those journeys we have been through.
The friends we have lost, the battles he will fight, the war ahead.
The mission to not change my son but CHANGE THE WORLD AROUND HIM.
Just seeing him hooked up overwhelmed me.
We are so blessed because it could be so much worse. I know this
and I know we will be grateful to have him always.
He is my heart, my soul, my life along with my other boys.
But there was something so final about the diagnosis seeing him all
hooked up and taking these tests. This is where we are.
I am not upset we are here but it's so final...this is our reality.
I can't really change the facts now....I just have to learn to ask for support
(I suck at that), stand strong, and learn to FIGHT and keep FIGHTING.
I have to learn to lose people, and lose battles because in the end
we will win the war. But I have a feeling this entire experience maybe isn't
only going to teach and strengthen, my son- maybe
it's mean to teach and strengthen me as well.
I would NEVER say my past abuse was a good thing but I know now that
it has helped me to prepare for the hard cold facts of life and helped me to
become the forged steel that I am not so I can be my son's shield....
and maybe that's not a bad thing....