When you can't change the world
Last night I was filled with fear. Fear of what would happen to him if something were to happen to me. I read a book, for the first time in forever, and in it the little boy lost his mum. His life was turned upside down because his mum got him like no one else did. I cried myself to sleep, as I have done many times before, at the thought of anything ever happening to me, and Tyler being left with no one to protect him like I can.
This morning I got cross. I ran out of patience because, just for one morning, I wanted Tyler to just get dressed and eat his breakfast without being distracted by the iPad. I wanted him to focus on me, and what I was asking him to do. When he started crying and screaming because I said no, I lost my patience and snapped at him.
I was completely consumed with guilt … I know deep down he isn’t being spoiled or a brat like a lot of people would presume he is. Tyler always has the iPad while he eats his breakfast, so for me to change that with no clear reason is inconceivable to him.
This afternoon I was overcome with pride as his new tutor told me had managed so well at his first session with her this morning. She sang his praises and told me what a wonderful and clever little boy he is. Cue more tears - but this time they were tears of relief because I’ve been so worried about Tyler’s learning. He’s going into primary four this year and despite having an assistant, he’s significantly behind his peers in a lot of ways; so to hear that I’ve found someone who will offer some practical help is unbelievable.
Right now I miss him, I always miss him, even when he is with me. Even when I tuck him in at night and cuddle him, I long for him to tell me what’s going on in his little mind, just once, so I can stop guessing all the time. Just so I know I’m doing any of this right.
Being a parent is a rollercoaster at the best of times, but being a parent to a child with special needs is like experiencing every ride on the theme park three times over within a day. You experience the highest highs and the lowest lows, sometimes all at once. You see the worst of the world, but because of that you can recognise the best much more quickly. People can be cruel, but many more people can be incredibly kind. You take nothing for granted and hang on to every bit of good, because it’s what gets you through the bad days.
At the start of our journey there were many bad days filled with fear, grief and anxiety. We were overwhelmed as we navigated appointments with twelve specialists, countless forms, assessments and reports. I had no idea what the future held, but I knew I had to fight to give my little boy a voice. When he was diagnosed with Autism at the age of 2 I was told he was unlikely to speak, ride a bike or go to mainstream school. He’s now 7, fully verbal and in mainstream education with a classroom assistant. It wasn’t easy, it never will be, but now that we have navigated this path together, I have come to be grateful for it all. I am so grateful for my boy and everything he has taught me.
Every day is a challenge for Tyler. Nothing comes as easy as it should, and whilst he struggles sometimes, he has never given up. Instead he tackles things head on and he sees the world in the most beautiful way. I say he is ‘pure’ and he is. He says it how it is, he doesn’t judge others and he sees the world so literally, without prejudice or social nuances that really don’t make any sense. There’s right and wrong, good and bad, happy and sad. He speaks to everyone and his manners are impeccable because those are the rules. He’s soft, with a heart the size of a lion. He loves hard and forms opinions on people based on how they treat him.
That’s the thing you see … there is nothing wrong with him, quite the opposite … he’s perfect. The problem is the world, and I would love to change it. I think all of us would. But I know that I can’t and that’s where the real challenge comes. I want to allow him to be exactly who he is, whilst giving him the tools he needs to survive in this world.
That’s much easier said than done, and every day is spent trying to figure out how to do that. I’m not perfect and some things I can’t protect him from, nor should I. It’s about balance isn’t it. The truth is, I’ll probably never feel like I’ve done enough for him or like I’ve got it completely right, but what mother ever does.