I’ve noticed that there are definite stages that you go through as a parent when your precious child is first diagnosed with autism.
Most parents feel one of two very distinct emotions: either completely blind-sighted and shocked, or relieved that you finally have some answers. And with both of those emotions comes a certain amount of grief. Immediately you start to worry about your child’s health, about your parenting skills, your other children, your family and most of all, how it will impact on the rest of your child’s life. You worry about their future like nobody’s business.
You want to know that it’s going to be ok and you clutch at straws for a while until you eventually find your feet and one day you realise that you’re easing gradually into a new emotional state. And that state is acceptance.
So you start to seek more information. You want to help your child in any way that you can, and your heart for your child is absolutely bursting with compassion. You put yourself in their shoes and you start to become an expert at predicting possible meltdown triggers. And if you’re like me: you jump on the advocacy band-wagon with both feet.
You declare that you are going to be a world changer and make society a better place for your kids to grow up in. And damn it…..you don’t quit trying despite the setbacks that you continually face. You pick yourself up time and time again because that’s just what we do.
And then sometimes, in some families, inexplicably and completely out of the blue: you face major regression and it breaks your heart in two. Before you know it, you are transported right back to the original emotional overload that you experienced when you were first given that scary diagnosis of autism.
Here is our story:
AS far as autism goes – things are plodding along nicely. But it’s the stupid co-morbids that are killing us at the moment. Common co-morbids with autism are Anxiety, ADD, ADHD, ODD and in Harley’s case: OCD (Obsessive Compulsive Disorder). Harley’s social skills, coping mechanisms and general well-being have taken a very steep nose-dive for the worse lately. His anxiety is through the roof, he is having trouble making or keeping friends at school, his sleeping issues have become uncontrollable and he has regressed into his OCD so far that it’s really starting to frighten me.
At night, he starts to become restless right after dinner. He starts flapping his hands ever so subtly, then he begins to lick his hands and fingers and just generally stars to panic. Over nothing.
Soon the pacing starts.
And then the retracing of his steps.
Three times to be exact.
He simply MUST walk along the same cracks in the tiles. If he doesn’t: he says that the voices tell him that someone will die. And he doesn’t want that responsibility on his head so he does it.
Over and over again.
It’s just crazy.
If he gets up to us at night (which he inevitably does every night), he will go back over his steps from his room down the hallway to ours.
So he’ll appear in our doorway then turn around and trace his steps again twice more and then appear in our doorway again.
(Rinse and repeat for the trek back to bed).
It’s getting ridiculous.
And just today I got the fright of my life when we were crossing a busy road and Harley let go of my hand to run back IN THE MIDDLE OF TRAFFIC to retrace his steps.
He was oblivious to anything but the pressing urgency that was gripping him. I had Lucas holding my other hand and I couldn’t let go of him to go chase Harley and in that moment I knew that I couldn’t save both of my boys and in complete panic: I froze. I literally stood still in the middle of the road and screamed with all that I had in me.
And thankfully, THANKFULLY the on-coming car came to a halt. I sat down in the gutter (kerb) and cried while Lucas happily danced around in circles and Harley started licking his hands (as he does when he is anxious). I cannot believe that this is what my life has amounted to. I am furious that this stupid disorder has robbed my family of such peace.
My boy’s hands are ruined. Look at them!
And yes he uses a special soap free wash. I rub a special cream into them each night and bandage his hands but nothing will work when his hands are washed up to 60 or 70 times a day.
I’ve had to admit that this has gotten waaaaay over our heads. He needs professional help and I have started the ball rolling today by phoning his paediatrician, but the earliest appointment that I can get is almost 3 months away and that just won’t do. At the moment, we would appreciate all prayers and well wishes that we can get and I’m spending my evening tonight googling local psychologists and I will find whatever money I need to find to facilitate this happening sooner.
I’m back in the early diagnosis frame of mind which is really hard but I won’t stop fighting for my boy.
Mark my words.