My son was diagnosed with mild to moderate Autism Spectrum Disorder , as well as ADHD, around 6 weeks ago.
So far, I have written about receiving his diagnosis (The Diagnosis), and how ASD presents itself in my sons case (What does ASD look like, to you?). I’ve written about how my overriding emotion on receiving his diagnosis was relief: relief that it wasn’t something we were doing wrong as parents, relief that now we had a name we could find the right support, to try and make things better.
In the time since the diagnosis, I’ve done quite a lot of reading as you would expect. Some medical texts, some blogs. I have come to a better understanding of some of my son’s behaviour, or if not to understand it, then at least to be able to reference it against his diagnosis. He misbehaves on holiday because he is out of his usual environment and finds transitions hard; he gets angry and lashes out when he is tired because it causes his senses to overload. I am piecing together a jigsaw, connecting the dots.
So, we have had relief, understanding – then came optimism. Shortly after the diagnosis we went away as a family for a weekend, and had a really enjoyable and relaxed time. A real rarity; so rare, I even blogged about it in the optimistically titled The First Good Weekend.
Of course, it was never going to be that easy.
For now comes the heartbreak, the despondency. The reality setting in. The realisation that this, even with support and understanding, is going to be hard. There is no turning away from this, pretending it’s not happening. We can’t coast our way through this, or take our eye off the road for even a second. Yesterday was a bad day. From the minute he was picked up from his School summer camp, he was moody, aggressive, uncooperative. Even though we now understand that this is, probably, because he is tired and struggling with the change in routine after the end of term, it doesn’t really make it easier to manage. And I am so tired. So tired of having to try so hard. I want it to be easier than this. I want to pick him up from camp and hear all about the amazing things he did, and the friends he played with, and for him to be excited to go back the next day. I don’t know what to do – how to make it easier for him, how to bring him out of the bad mood.
I don’t know how to make him happy – my son.
So what happens now ? Because we received our diagnosis pretty much at the end of the school term , it seems that everything in terms of formal support has closed down for the summer. Which is ironic really because this is when we are going to need the help more than ever, as we spend more time together as a family unit. Parenting classes will start in September, as well as some play based therapy for him. The School have done the necessary form filling to request Special Needs support for the next academic year. Two caveats here though; it definitely won’t be from September because we missed the deadline for that. In addition, it is by no means a given that he will get the extra support as the letter we received from the CAMHS clinic did not specifically refer to ‘SNA’ support, rather recommended he receive the ‘maximum support available to him’. Make of that what you will; we live in hope for now.
There are financial supports available; tax credits, allowances. I feel a fraud applying for these. If you met my son, you would think he was fine; well, maybe a bit grumpy if you got him on a bad day, but essentially fine. Surely these allowances are for children with physical disabilities, or more severe cases of ASD than my son. We don’t deserve them. And yet, do I think are daily lives are impacted by his behaviour as a result ASD/ADHD? Yes, I do. Do I think it’s more stressful than raising a child with no additional needs? Based on my experience with his sibling, yes I do. Would we do things differently if we had a little more money to play with? Yes, certainly. So we will fill out the forms, with guilt, that we don’t deserve it, and trepidation, that it will be refused.
We will carry on down this road, eyes fixed firmly ahead.