As most parents of any child with a disability will tell you, the feelings of loss come in waves. Following any diagnosis of a disability, there is a feeling of enormous grief for all the things your child may never be able to – speaking in front of a crowd, dancing at a school disco, holding down a job. For the most part, you come to accept these things as part and parcel of your child’s disability but every so often that feeling of loss sideswipes you and has you feeling as raw as you did after the initial diagnosis.
Development assessments or reports are always heartbreaking. You might know that your child’s gross motor skills are delayed but you hate hearing it from someone else. No matter how unfounded it is, you always feel like a failure for not spending more time with your child or taking them to more therapy sessions.
For me, the latest blow came from a letter from Aidan’s preschool. My soon to be 5-year-old must attend primary school next year and as such, a letter was sent home with a list of all the skills a child needs before starting school. For Aidan, who is physically and intellectually the equivalent of a 2-3 year old, I already knew he was behind his peers. Still, I scanned through the list of 80 skills ranging from identifying their name to dressing themselves and counted just 30 Aidan could actually do. It really wasn’t a surprise but boy, did it break my heart.
I decided I would start to tackle one at a time so I chose ‘colours’. From birth we had been speaking to Aidan and trying to teach him his colours (yes I am trying to justify to you that I am not a neglectful mum). Like most parents, we preface everything we say with a colour, “Here is the BLUE car’, ‘Would you like the RED or GREEN pencil?’. For most children, that’s enough to learn their colours but not Aidan – he has absolutely no concept. If he sees any two colours together he knows exactly which football team they represent, but get him to name them and it’s a stab in the dark.
So out came all the hundreds of dollars’ worth of education equipment we have purchased over the years and I set aside some one-on-one learning time – ‘This is Blue, this is red, what colour is this??? blah, blah, blah… I‘ve been like a broken record all week. Every time he says red to a blue pencil my heart breaks a little more.
The reality is that if Aidan were to go to school next year without knowing his colours, the world wouldn’t end. He currently goes to preschool 2 days a week where is also enrolled in a special preparatory course for children transitioning to kindy, he goes to music class and we still talk about colours in every day context but there is only so much ‘learning’ time a child (and his parents) can handle.
So after a week of stressing out, I have finally let it go. For now at least, I’ll focus more on living than learning (until the next report comes my way and I beat myself up all over again).