Parents of autistic children are vulnerable both to the hype of those who promote snake oil as a cure, as well as the demands of the children themselves. Some parents of autistic children have more money than sense, or certainly little sense, when it comes to money. In their favour, parents of autistic children readily admit their shortcomings – encyclopedic knowledge of dinosaurs, [C +] time table details of Thomas and his rabble, [D-] plot graph of the powers of Pokemon, [E for effort] Yukio qualities, [F--] just let me die now! This is how parental bias sneaks into the equation.
I grind the sleepy sand out of my eyes as I shuffle around the kitchen in my black fluff muffs, willing the life blood to flow back to my toes that I can avoid gangrene and digit removal. A small, bouncy fast moving person comes into focus. “What it is?’ “What is what dear?” “What is what be rhyme?” “Er what word do you want to rhyme?” “Chocolate.” I knew that! I really knew that, or I could have guessed it. I think. What rhymes with chocolate? Anything that ends with ‘ate’ with two syllables before it. “Perambulate!” “Dat is not a word!” he bellows. Suddenly I am back in school and still failing. “Dat is four! I am need two!” “Well it's not four syllables, that's because your enunciation is ……..” I eliminate ‘crap’ and substitute ‘in need of assistance.’ “Chocolate has three syllables. Choc o late, just like Nonna says. It’s not ‘choc’ ‘late,’ two syllables as Americans say, nor ‘choc’ ‘lit’ as Brits say. Both of them are wrong. Nonnna is write, I mean right. Nonna knows best.”
He pouts, doubtful but drawn by the inevitable truth of a superlative and peerless grandmother.
“Nonna say it be three?’ “She does.” I lie without thought, as Nonna and I have never discussed syllables in detail. “What it is?” “What is what?” Are we really still here? “Perambulate?” “Ah well, 'ambulate' comes from the Latin, which means walk or movement forward and ‘per’ means before……. so you, push the ‘thing’ before you as you walk and the ‘thing’ is the pram which is…….like a pushchair….um...a stroller.” Beam me up now. I know not what I do or say and Latin is old and mold and I am being dumbfounded by a six year old! “You are being dah dumbass!” I know! Don’t you think I already know that? How come your tiny brain is so huge? Why do you care? Do not taunt me with your speech delay! What I wouldn’t do with a mere fraction of your brain capacity! “Where it is?” Please, please, please! “Where is what dear?” “Fing?” “Fing? Er thing? What thing?” “Dah fing dat you said in dah perambulate?” “Um?” He summarizes for me, so I can get back on track, pick up the thread and hang myself with it. “You have dah ‘per,’ you have dah ‘ambulate’ but you have lost dah ‘fing’” I have lost more than a thing dear. I decide that surrender is my best option, that or deflection, “hang on a minute, I have something to show you!”
I run off to the spare room to retrieve the Rhyming Dictionary that I bought as a present for a pal. I kept it because I discovered that she already had several vastly superior volumes. My paltry offering was an embarrassment. I dash back.
“Do you know what this is lovey?” He reads the title. He knows the first word but not the second. Is it a good idea for a child such as him, to become familiar with the second word? I hesitate. I am already out of my depth, maybe I am giving him the opportunity to drown me? Do I give him the Keys to the Kingdom or open Pandora’s Box?
I glance at the clock, 6:03 a.m. It is far too early in the morning for me to be able to calculate the odds. I quickly run cons through my mind. He will be frustrated and overwhelmed. There will be a slew of negatives associated with failure. He’ll kick it, rip it, chuck it or bite it. There will be snot and tears and meltdowns. We will start a new day under a big black thundercloud that will haunt us all day.
This perspective has to be balanced against the potential for……fun? It will not be fun, it will be a disaster, a disaster that I will have engineered myself. Take any 100 opportunities for fun and 99% of them are sure to induce misery due to faulty miscalculation by the parent.
I must acknowledge that I am habituated to the negative. No matter how many times I push the enveloppe it always results in a stamp. I need to get up at 5 so I can be awake at 6 and stop these knee jerk reactions. I need to function as an adult and make better calculated positive decisions. Spontaneity has died as I am too scared to deal with the fall out, I merely respond. I am the B actor. I wait for the star to initiate and follow my best guess. Even my best guess is usually several miles off from the true target.
He is nearly 7. How would the average 7 year old react? Is there an average 7 year old on the planet?
I err on the side of self help, keep the faith and begin to explain. His eyes widen. Hyperlexia is often the heightened ability to read words. It does not always carry the ability to understand them.
The print is tiny, but that could be the dusty bifocals. The average book that he’s familiar with, is printed in font size 24, this on the other hand, is minute. I watch his sliver of filthy fingernail guide his eyes along the list, his feeble lip closure sounds out the syllables. “What it is?” “What is what dear?” “What be dah rhyme wiv ‘gold’?” All my children shout out the usual offerings. Collectively we cover most of the bases.
“Let’s check. Let’s see what the dictionary says?” I cross reference and leaf through the delicate pages. I read them all out to him. He is especially taken with ‘twofold, threefold, fourfold,’ and their ilk, but I’m inclined to favour the release of the stranglehold and relinquish my toehold of control.