An apple as they say doesn’t stray far from the tree. And my daughter’s need for a black and white world with concrete answers undoubtedly comes from me.
When she was diagnosed with Asperger’s, it provided us with a route, a direction a guide map. We not only understood the difficulties she might face in the future but we could look at the experiences of others to understand how to help her.
Her diagnosis therefore brought about worry but also relief.
We had answers and with answers came the ability to plan.
We could educate ourselves, seek advice, and be confident in our actions. In essence knowing why she was finding life difficult meant that I could be more confident in my parenting, I was no longer stabbing totally in the dark.
With Number Two however I am beginning to realise that perhaps we (or more truthfully I) have to realise that there may not be answers out there. We may never understand why he doesn’t eat. We may never understand why his left arm learns things later than his right. And we may never know what the future will bring.
No answers are both positive and negative.
No formal diagnosis means that improvement is always possible, it means that one day we may wake to find that it difficulties have disappeared. But on the flip side it also means the opposite.
We have no road map, no guide book. Nowhere to look for answers.
And that is a lonely place to be in.
I miss having a tribe.
We have incredible friends and a very supportive family. We are incredibly lucky. But I would love to talk to someone who has walked the path we walk, or even better someone who is walking it as we do.
And without a diagnosis that is hard.
Of course we are not alone, worldwide many families have children with undiagnosed conditions, many for many years.
Answers are not always easy to come by.
Like everything else, it is something we will come to terms with. But I cannot help but wonder if we will ever stop looking.