Much hesitation follows, then she continues in an accent that immediately conveys her discomfort and anxiety:
“Is it making you sads when I is not liking hugs?”
I have to clarify that this wonderful girl is very nearly a teenager, tremendously bright and extremely articulate. She also happens to have Asperger’s syndrome and suffers from at times crippling anxiety. Her speech then becomes affected, from the appearance of strange and quirky accents, to grammar reminiscent of Roald Dahl’s BFG, to a complete inability to utter any word at all.
“Is it making you sads when I is not liking hugs?”…..
My answer was an immediate no, by the way. But her question stemmed from wonderful work occuring at her school during which she and her friends are exploring what it means to be autistic and a girl. And in the work, she learnt of a mummy who told of her sadness faced with her daughter’s dislike of physical affection.
There is a great deal written, especially in the world of blogs and social media, of the difficulties faced by parents of children with special needs. There is also a great deal written about the wonder of such a life.
I’d like to find a way to write a balance, to let you in to my life in such a way that you understand the extremes with which we live, simultaneously wonderful and dreadful. I’d like to find a way to write how much I love my children and being their mother, and yet how hard it is to witness their difficulties, how hard it is to bear the brunt of their confusion, anger and sadness.
Would I change anything about these three little people? No, categorically not. Simply because the sum of their experiences and differences make them who they are, and I am loving seeing the burgeoning personalities and the potential they have to add some unique colour to our world.
Would I have chosen such a life? Would I recommend that you have children with additional needs? No, categorically not. There is no simple answer here. Any new parent quickly realises that having a child is a one way journey that will change nearly everything about how life progresses. With our special children, that change comes at you like a steam train, and does not stop. It is far more extreme than you might imagine, and the period of change and uncertainty lasts… a long, long time. Your choices as a parent, and as an individual will be informed and often decided by the disabilities faced by your child, and this will likely continue far into their adulthood. Not to mention that these children will always face far greater challenges than most. From the beginning, their lives are just tough.
So I am trying to write to my daughter… to tell the world how much she means to me, to tell her that I love her and value her just as she is. But I do not want it to be a rose tinted letter. I do not want it to be a starry-eyed fairy tale, because she needs to feel a primal honesty in it if she is to believe it…