I reach out my hand but you pull away, I open my arms and you flinch as if in pain, I open my heart up but you ignore to see the inner core of a heart that’s full of love for you.
Your first day at school you clung to me, arms wrapped so tightly around my neck I felt as though I couldn’t fully catch my breath… You did this for weeks, they blamed it on a detachment problem.
Then one day they just took you from my arms, carried you away while you kicked and punched as you screamed the word “Mummy” through your tears. Your tiny arm was stretched right out before me, your hand flapping up and down crying out for me to take a hold of it (something you never normally wanted). You wanted me to save you and I couldn’t. I cried but was told to toughen up, the tears wouldn’t help you.
“It will get easier” they kept on telling me, yet it didn’t every morning was the same as the one before.
I’d come to collect you, be stood in the playground waiting for you. Other mothers chatted and looked in my direction, some even made comments out loud that referred to me in some horrible way. I didn’t fit in but neither did you.
The bell rang out and as the doors swung open children darted out in all directions into the open arms of their parents. They stand staring as you appear from the doors, look at my open arms and ran the other way. Some could be heard whispering to one another, many laughed as I set chase running like some manic mother fearing her child may make it to the dangerous road outside.
By the time we reached home you were unstoppable, like a bull in a china shop you trashed about as you shouted and cried about everything and anything. I didn’t no what I should be doing to make things better for you, I wasn’t even sure of the issues you were upset about. I know now it was nothing precise, it wasn’t the fact we only had one biscuit, nor the fact I’d made pizza for dinner even though these were triggers, it was the underlying cause that was needing to be fixed. No… Not your Aspergers Syndrome, But your schooling.
We didn’t have an Aspergers diagnosis then… We had nothing but a load of court letters threatening court action for your school attendance that had now started to decrease. I’d try to get you there in the mornings but given you had not slept till 4am you’d wake with such anger. I was tired… You were tired! We didn’t need scare tactics what we needed was support.
Some almost 3 years and 2 court cases later you were diagnosed. I felt both relief and pain. You had been through so much and I’d failed to make them listen. I felt guilt for getting depression when the school just looked at me like some overprotective mother but at the same time some kind of shit one. I was screaming but no one could hear me, I now know that no one wanted to!
I felt resentful to a system that had failed to help me get the support we craved, to our british justice system who fined me what little pennies I had for your lack of school attendance… I felt guilty every Friday I saw my therapist and told him I felt like giving up.
There is a point to this post and for me a very important one…
Labelling isn’t always a bad thing it gives us answers, it gives a platform to start building on.
It wasn’t that my son refused to hug me because he disliked or loved me! It is because he is tactile defensive. Knowing that has helped, OT has helped and cuddles are now given once in a while (even if they are quick they are special all the same).
Without that label that many describe as wrong to give, my son wouldn’t have been able to attend the special school he does today. It’s pretty obvious now that my son’s autism traits such as hating change, poor social interaction and sensory processing were only part of the reason he feared the place he was expected by law to spend 6 and 1/2 hours of his day, 5 day a week attending. Bullying made up part of the fear which consequently, everything combined lead to what I now believe to be school phobia.
Without the label I’m scared at how life may have been today. Could I have found myself sectioned in a Psychiatric ward, I think quite possibly… Yes I could have! Where would that have left little man… Where would it have left his siblings?
Instead I started to get stronger and it was a bloody good job too. We had a lot of battles to come and I needed to be well enough to take them on.
I’m extremely passionate about advocating for families dealing with autism! It should always be understood that its not the diagnosis that is the problem but the carp that often comes with it! We do have to fight harder for what our children actually deserve, what is overly best for them. But to try and get any of these things without a label… Is like a dog chasing its tail in circles.
If your worried your child is on the autism spectrum, don’t let others make you feel bad for seeking your diagnosis. A label doesn’t have to be a bad move it can actually be a really positive one!