Today you invented a new word. Spectrumy. What does that even mean?! I was talking to you, my neighbour and acquaintance of over 7 years and the subject of DS’s Autism came up. “Oh yes my children are ‘spectrumy’ too” you told me.
And… “I have very difficult children, they are extremely sensitive”. You went on to say “We are all ‘spectrumy’ in my family…though more the Asperger end.” (You said this like you thought Aspergers was the more elite end of the spectrum!)
Yet I imagine you know nothing about the very real and often completely unmanageable daily stresses of people really living with Aspergers syndrome – so your self diagnosis makes me feel hopping mad. In my mind you are belittling everyone with Autism. Your children, who often come to play in my garden, do not appear ‘spectrumy’ to me in any way, shape or form.
I want to tell you what autism really means for our kids but I don’t know how to begin. A dear friend springs to mind, whose non-verbal child smears poo on his bedroom walls and regularly bolts as, like so many autistic children, he’s in a constant state of fight or flight. He needs 2 adults to keep him from harm and hold him safe when he has a meltdown.
I tried to tell you how people don’t understand when my DS bangs his chest and roars like a gorilla in the face of strangers when he is stressed and you just laugh out loud. You think I must be joking. Exaggerating.
I’m sorry to hear that your children are sensitive. Then surely you must know how it feels when they can’t cope with the lights, noise and crowds in a shop and they lie on the floor beating the ground with their fists? When they need a weighted blanket to be able to sit for five minutes to give their bodies a rest from the constant hyperactive over stimulation that they are never free from. And even then, how you have to hold them still. How they need to rock, spin, hit and hug themselves constantly in order to feel regulated? Or is that not the kind of sensitive you meant?
A few weeks ago, it was you again who felt you must comment when you saw me struggling to unload a big boys bike with special parent handle from my boot. You told me I was likely too late in the day to teach my son to ride a bike (he’s 9). You told me that you have to ‘get them when they are young’ like you did.
What you fail to comprehend is that my big boy is not like your kids. When he was younger, all he wanted to do was spin around and around and sit under the table lining up toys in precise rows. You obviously know nothing about developmental delay – of how it can be both physical and cognitive.
You have no idea that DS can’t use the pedals even now, that he doesn’t have the strength in his legs and feet, nor the coordination to pedal and steer, not to mention the concentration and focus needed to ride a bike. That he can’t bear to keep holding the handle bars because he needs his fists to beat his chest. That he always bangs on his chest with clenched fists when he’s stressed and that sitting on the bike makes him feel stressed.
You don’t know that unless I take him out on the bike with the special handle, he will never have the experience of riding a bike. But I don’t ever expect him to graduate to riding freewheeling without the parent handle and yes I am happy to push him along with the special handle for as long as he can cope with giving it a go. Because it’s a bike; he’s a boy. It’s what we do right?! This is what we need to do before we give up and apply to a charitable fund for a special needs trike.
Oh but shouldn’t you know all of this already though? As your children are ‘spectrumy’ too right?!
I don’t say any of this though. I mean where do I even begin? I just nod and grimace. This post is for all those SEN parents out there having to deal with a lack of awareness. Who hasn’t heard someone say “oh but we are all a bit autistic right?” “I file my paperwork in alphanumeric so I must be on the spectrum”!