The first line of my very first blog post three years ago said “I was standing in the shower this morning with tears streaming down my face” How sad is that? I was sad a lot. I can’t be too hard on my younger self for being so upset, I was heartbroken. All the pre programmed expectations were gone.
I knew Sam had autism before he was diagnosed, but being told it and really starting to face your families new reality is a still a huge shock to the system. A big fat slap round the chops. ‘Wake up this is your new reality!’ I don’t look back on that time fondly really, it was the war zone time, but it was the time we desperately needed to get through as a family together, because we were learning. All day every day, we were immersing ourselves in all things autism. Sam was so confused at that time, and because we were too we didn’t know how to cope.
Once you start on that path, you can’t veer off. You on it.
At times though you need to take a breath. Remove yourself for just a minute while you get your bearings in this brand new world order.
Once we got into our groove which took a good 12 months I’d guess; I found I didn’t want to get out as often anyway. I suppose in a way all the research, all the only talking about Autism (because if you are like me it was never off my mind) its like an immersive therapy of sorts. You need to do it all for a time, to learn when you don’t have too. I’m not saying I switch off, I really don’t, but the crippling fear isn’t as powerful, and I can compartmentalise now too.
Three years later that reality is just life…a happy one at that I’m pleased to say. Oh it’s tough at times, but wow, the tough times do a fantastic job of highlighting just how good the good times can be. Not parties or too many days out, but weekends spent drama free, snuggled up in bed all day with my boy watching tv and eating cake. Hearing him repeat ‘love you’ back to me is probably one of my highlights of 2018!!
Because that’s sort of how I see our life at the moment. A series of highlights, broken occasionally with a low or two.
Our day to day is so structured. Since starting school all Sam has wanted to do when he’s not there is stay in. For now I don’t mind that. I’ll never force anything now. What’s the point. The point is actually to keep him as calm as possibly as often as possible.
Sam’s official diagnosis was 3 years ago today. 15/10/2015. He was just shy of Three. When you think about it that’s probably one of the hardest times to parent any child. Sam was no different in that respect. Apart from he was confused a lot and anything could send him into meltdown.
Three years ago Autism was a foreign language I couldn’t speak in order to reach my son. A code I couldn’t crack. So this past week I’ve been thinking about what Autism means to me now.
As I primarily started my blog as a therapy for myself and for my family & friends to see something of what we see.
Autism, to me now. Apart from my eldest son Connor, it is the most important six letter word I know. A six letter word with thousands of definitions. Is it a label? To some maybe, to most emphatically NO.
A diagnosis, A neurological difference between my son and myself.
A child, my child. Your child, your husband or your wife. Your sister or your brother.
Autism gives me an extra reason to wake up every day and be a better parent, and in turn a better person.
Autism is a mahoooosive subject. Infinite. I’ve learnt not to immerse myself in all that it could be and just focus on Sam, his unique version of it. When I did that my reading list got a lot smaller!
I’ve learnt that when you get diagnosis, you also get put into a place where you have to fight for almost everything. Where things are hard enough for us, outside influences appear at times to want to make you work that little bit harder for your childs best interests to be met. The hoops, my god the hoops we’ve jumped through for Sam, which of course goes without saying I would do over and over, but its exhausting. Physically & mentally.
Our near miss tribunal with the LA scarred me at the time, just thinking about it brings my heart rate up!! I have learnt that I will stop at nothing. (link to tribunal debacle for anyone interested in reading more) I am proud of how we got through that time. Can’t say the same for our Local Authority. Absolutely awful every one of them.
So what else has changed, I’m trying to condense here as I can feel myself rambling on.
Three years ago, Sam had no words. Now through some therapy but mainly I think it was Sams desire to communicate. Now he has so many words! He isn’t conversational by any stretch (yet!!) He is copying so many words and a few phrases. Such as “Time to go to bed” and “Sounds good to me”!! My personal favourite “Love you”!!!
That’s the thing about Autism, it takes you everywhere with it. Every high is so so high and every low equally low. If you can make a couple of fellow Autism parent friends you can count yourself lucky. You realise quickly how important being in the same boat becomes. especially when you are drifting.
I know how lucky I am at times. Non of us would change our children for anything, most i’m guessing wouldn’t take away that integral part of their children, but I know how lucky I am to hear my son speak. Asking for juice purple (vimto) or popcorn or chicken nuggets is a blessing. I can also say, if Sam never becomes conversational, that’s ok. Obviously I would love it, but he has come so far. Anything else is a win for him.
He is a happy, healthy, funny little boy. He’s asking for school every morning which is obvs wahoo!! Like I say, he is happy, learning at his own pace. That was a hard lesson for me to learn in itself. Learning to let go of the social norm that told me my son would talk, sleep through the night. Stop wearing nappies.
If I could give any advice I’d say try your hardest to throw ‘expectation’ out of the window. If your baby is anything like mine, they don’t care. We do. It takes some serious mind training to stop yourself ‘expecting’ too much from your children. Of course, it’s good to have goals, but be ready to move the goal posts a few times aswell.
I used to hate Autism. I can say that out loud, I hated how it made him feel, how it slowed him down and sent him somewhere I couldn’t reach at the time. Not anymore. We embrace it now. In my house Sam & his autism definitely give more than they take.
Autism isn’t our life. It isn’t who Sam is either. But it does belong with us.
So that’s where we are three years later. I’m off now to give him the 10,000 tummy kisses he so happily demands every day. 💙