The motto of a special needs parent.
I cannot recall the number of stories of disabled children achieving a milestone that the parents had been told would never happen. The special needs community loves these stories of hope, of achievement – of proving the specialists wrong. It is what we all dream of – especially in the undiagnosed community where the prognosis is often unknown.
I recently congratulated a very special mum whose son had learnt to crawl, defying all the odds – ‘well done you’, I said! Her very modest response was that her son had done the hard work but this sparked a little eureka moment for me – by not setting limits, by providing opportunity, by giving encouragement, any child will flourish.
As we all know, years of the ridiculous idea that boys are better at maths has created a void of talent in the science, technology and engineering worlds – so few women have really made into this male bastion. Even now, in GG’s sisters school, the teacher has the girls reciting the mantra ‘ I am brilliant at maths’ over and over, to undo the societal blockers to the girls inher class.
Removing the perception blockers are even more important in the case with a disabled child. You are told your child will probably not walk, so why bother with the physio. You are told your child will not talk, so you talk for them. You are told your child has a low level of understanding, so you do not engage them in conversation. The battles are tough enough in getting through the day without adding extra pressure.
I recall my extreme reaction to the idea that we might want to consider respite for GG so that our family can do ‘normal’ things. The offers from family to have GG to stay, so that we can have a weekend away with the others. It took me a long time to accept that the break is good, for us and for GG but I remain determined that GG will have a full family life. She will not be excluded, to the best of our ability she will share the same opportunities.
It took me 3 attempts to find a swimming lesson that worked for GG. I need to be in the water with her, which at age 5 is unusual. One teacher (the swimming SEN lead) actually said ‘I don’t know what I can teach your child’ – this fired my determination. The sessions she now attends are small groups – only 4 children, all younger but GG is picked to demonstrate the things she is good at – mostly putting her face underwater! – and the things she cannot yet do pose no barrier. GG can swim, it is inelegant and inconsistent, but the persistence paid off and she loves it.
On holiday, the kids clubs seem out of reach, we certainly cannot leave GG unattended so we go too. I have yet to find a kids club that does not welcome her attendance. Some nervous child carers not sure what to expect but who soon relax when they see how much fun she can be.
A far more mundane example was the aspiration some years ago to enable GG to make a choice – every day for several years, GG has been given a choice of cup colour with breakfast. It was months and months of this daily routine that eventually resulted in a point to the one she wanted, sometimes with limited engagement, other times with determination. It was the arrival of the Peppa Pig vs. the Mr Tumble cups that tipped the balance. Suddenly she looked forward to making the choice, alternating between the 2 and that glorious, magnificent day when ‘(P)eppa’ was verbalised and a few months later ‘(T)bumble’ followed. The simple things.
When GG was really small it was unclear if she would walk. We found an intensive therapy programme that she joined before her 2nd birthday that she still attends to this day. It is hard for her, exhausting despite the best efforts of the physios to make it fun. There are tears, tantrums and frequent urges to step in and say stop. It is hard but we know the benefits. GG can walk, she is trying to run (more of a charge as she leans forward in an attempt to accelerate!), she is developing better balance. One day, we are certain she will learn to jump.
Quite simply, we never say never.