If you had asked me a year ago how life was going, I would probably have told you that we were absolutely excelling at it.
Laura was rocking it at primary school, loving year six and excited about secondary school transition. She had friends who understood her, and who in return she understood. At home she was more relaxed than we had ever seen her, and she was in one of those periods where anything seemed possible.
Juan was off the feeding tube list, experimenting with different foods, loving spending time with his friends and just an all round joy to be around. His sunny easy going personality meant that we (or well I at least) were even discussing the possibility of another baby to follow. After all, being with other children was what he enjoyed most in the world.
And us, well we were enjoying a brief lull in the storms, enjoying our children, hugging each other and making the most of the days.
Fast forward a year and life looks both the same and immeasurably different in pretty much equal measures.
Laura is still rocking it.
She has once again exceeded all of our explanations beyond measure. Secondary school transition whilst stressful to begin with has been fantastic for her confidence and she even (watch this space) has two residential trips coming up over the next few months. As for friends – she has made more than either she or we ever imagined and is fast becoming a social butterfly- though admittedly she has been shocked more than once by the antics of her new acquaintances – it’s all part of growing up.
As for Juan, he is still the light of all three of our lives.
He has a laugh like no other, and constantly has us all in stitches. He’s still putting on weight and we’re still managing to get calories down him though I don’t think any of us will ever take that for granted – we constantly change things around and buy things to tempt him. He definitely isn’t easy to choose meals for, but when we get it right we all cheer with happiness.
But over the last year other struggles have also come up. He struggles now with loud noises, busy places and with friends coming over. It has taken us nine months of carefully building time at nursery but we have done it – or more accurately he has done it – and the fabulous staff at his nursery have shed blood sweat and tests to make it happen.
We are therefore just about to embark on Autism assessment for the second time around. His sister’s double and yet her complete opposite. My two perfectly illustrate that no Autistic children are ever the same – even when they are parented identically.
There is a sense inside me that this time around the process should feel easier. I know the answer in my gut. I know he is Autistic.
And yet instead we sit in this limbo land. A land of knowing without certainty. A land of wondering. And there very likely we will sit for the next year and a half.
Here like in other places waiting lists are long. Far longer than they should be. So although in my gut I know his needs, I am left unable to advocate for them, unable to act.
And inside my head swirls with wonder. What if I am wrong? Should I be stricter? Or more gentle? Should I be starting a sensory diet or thinking about discipline?
I tangle. I wonder. I get no nearer to the truth.
Second time round is not easier. Not harder. It is just more of the same.
More not knowing.
Still no answers.