Diagnosis #2 – accepting autism.

Wednesday, 11th September 2019. The day we received diagnosis #2. The day I’d been fighting for. The day I’d filled in a multitude of forms for. The day we’d had lots of observational assessments for. The day all the evidence was collected for. The day every other appointment was building up to. The day I knew diagnosis would be given. The day I was prepared for. The day I knew what the professionals would say. The day my heart felt a huge mix of emotions all in one moment. The day they told me my son is on the autistic spectrum.

I knew the diagnosis was coming. I’ve researched autism for a while now and I knew my son displayed many traits & behaviours consistent with autism. I knew that an official diagnosis would not change the amazing person he is but my heart still felt sadness when it was confirmed. Maybe it’s the fact that he’s now been given a label – I mean no-one ever wishes for a label, maybe it’s the fact that it’s now written down in black & white, maybe it’s because it’s another name to remind me that our life is not “normal” and won’t ever be “normal”. Maybe it’s because I have to face all the fears I have about my son not “fitting in”, maybe it’s because the worries about people not accepting him are now very real, maybe it’s because I know he will always face challenges just trying to be himself in this world that doesn’t understand him. But my heart also felt relief. Relieved that we can now access support, relieved that there is a reason my son does the things he does, relieved that I can explain his “quirks”, relieved that I can put things in place to help him cope with the difficulties he faces. Sadness, relief, fear, worry all mixed together in my heart that day.

He knew something was going on that day, he asked why I thought we had the appointment. I couldn’t yet tell him he was autistic, wasn’t even sure how to start explaining it. So I told him he had an incredibly, brilliant mind that works in a different way and that we’d went to see about it. My heart also felt pride that day – proud of how my son notices the tinniest details, proud of his gift with numbers, proud of how he faces the every day and proud of how he tries to handle the challenges.

Autism is different for every family; for us it’s lines of cars, lists of facts, the same tv shows on repeat, meltdowns, very literal, factual conversations, sensory issues, structure & routine. Autism pretty much rules how we do life at our house. Autism diagnosis is not going to change the person my son is and it’s not about him changing – it’s about those around him changing. It’s about trying to understand how his mind works, it’s about trying to see things the way he does, it’s about helping him cope with situations he finds difficult.

My son amazes me. He is often a hurricane of crazy energy. He is funny, loving, intense & totally bonkers. He is different. He has autism. But if you let him be the awesome person he is, he might just change the world one day.

To our chas volunteer!!

The world is filled with lovely people, some of us are lucky enough to see this loveliness in action. Quite a few months ago we were offered the chance to be part of a new program that chas were running – a home support volunteer program. This service matches volunteers to families who are chas service users and helps where people feel they could do with an extra pair of hands; they might come in & help with some house work, maybe they will help catch up with some errands or they can offer support to a sibling. We asked if we could have some sibling support for Caleb; someone who could do some activities with him & keep him busy after school one day a week. Caleb was matched to a volunteer & this lovely person gave up her own Thursday nights to support him over the last few months. Sadly for us, our volunteer was offered a new opportunity which included a move down south so our Thursdays nights won’t be the same. We said goodbye a few weeks ago and this is a thanks to you – our lovely chas volunteer:

Thank you for coming into our home and totally getting us – for accepting the craziness & for just joining in with it!! Thank you for listening to Caleb talk about space, planets, numbers, countries & all the little obsessions he goes through. You didn’t just listen and nod along like so many people often do, you actually joined in with him; you gave him new facts, you fed his imagination, you expanded his knowledge! Thank you for running around the park to play football, for letting him win, for counting steps & for helping him achieve that biggest steps record ever!! For the hours you had to bounce on a trampoline and for the times he shouted because you were late!! Thank you for turning up at our house with craft supplies ready to keep Caleb entertained, for looking up experiments & projects you thought would interest him and for sitting watching repeats of Shaun the sheep whilst eating ice poles. Thank you for giving up your own time, for driving a distance to get to us & for being Caleb’s “grown up” that was just for him!! Lastly thank you for the postcard you sent Caleb – knowing how much he loves routine you said he’s to read it on Thursdays & knowing how difficult it is for him to understand the unseen you asked him to find your location on his globe so that he could see where you are!! It was such a special thing for him & just so you know he says a 7 hour drive is not too far for you to still visit on a Thursday!!

So lovely volunteer, we’re so glad you were a part of our family and wish you lots of happiness in your new adventures!!

If you are someone who has experienced the amazing work a volunteer does then you are like us & very lucky to see that there are lovely people in this world. If you’ve never experienced the work of a volunteer & you have spare time & a big heart then maybe you could be one and be the reason someone believes in the goodness of people!!