Acceptance is multifaceted

I have so much to tell you, I can’t keep it all in. I started this blog only this morning and I seem to have found a form of inspiration so magnetic to me that I now cannot stop typing. I don’t think I’d realised how much Sawyer’s first 2 or 3 years had affected me emotionally until I started writing it all down, and I don’t think I’d realised until now how much my life has been changed by them.

I have so many stories to tell you that I want to stay up all night writing, so I can send my stories out in to the universe. But I want them to make sense, and I want them to do justice to how it was. To how it is. I want my words to do justice to my son. All the stories are coming, I promise. I don’t know which order they will come in or if the order, once established, will make any sense to you as a reader. But when the time is right my stories – his stories – will be told.

For now I’ll make do with making chronological sense. Where was I?

Ah yes, Sawyer learned to walk.

I remember so clearly the day that I typed four words in to Google. “Safety helmets for toddlers”. Not for when he was riding a bike (he wouldn’t sit for that long!) but for general day to day use. Sawyer was running and falling so much that I genuinely feared for his brain. Surely other children didn’t fall over this much? I mean is it normal for a child to be so clumsy? It would appear so, since at his 1 Year Check with the Health Visitors he ticked all the boxes to indicate he was developing normally.

I answered the questions as honestly as I could but developmentally the truth was he just wasn’t behind. Aside from what I thought was a slight speech delay at that age, he said Mama and Dada and he used them for the right people. He could walk, crawl, roll, spin, jump, throw. He had teeth. He slept at night. He no longer had a bottle. I will never forget at the end of the appointment, the Health Visitor asking him if she could weigh him and measure him. He didn’t even hear her. In fact, he hadn’t been interested in her, the toys around him, or anything in the room from the second we arrived. She moved over to the scales and stood patiently, calling him in a calm voice and waiting for him to follow her instructions. He didn’t. I scooped him up and plonked him on the scales, but trying to keep him still, I already knew, was futile. Eventually, she wrote down something that could have been his weight, and we left.

November 2012 we decided to go on holiday to Lanzarote. Our first attempt at a little holiday had been scuppered by his inability to keep still, but he was older now (18mo) and we were going just the three of us so I hoped it would be easier for him to deal with. He would have our undivided attention after all.

I will never forget sitting on the tarmac at Stansted Airport with an overwhelming feeling of panic washing through my veins. I was shaking and my chest was tight. We had left the house at 6am and he started before we even got to the end of the road. He didn’t want to be in his car seat and he screamed bloody murder for most of the 35 minute drive. Where had I gone wrong? I had done everything I had read about in the holiday blogs. I’d sought advice from other Mums about how to keep an active toddler happy on a flight. I had snacks, I had milk, I had cartoons, I had books. So why had we not even got to the airport without a meltdown? Shouldn’t this be the easy bit?

We boarded the flight and Sawyer sat on his own seat in between us both. He needed to sit on that seat for 3 hours, with a seatbelt holding him in. What exactly was I thinking when I booked this flight? How did I think this would ever work? There was a moment where my husband and I looked at each other in complete desperation, that I’ll never forget. We were silently looking at each other, each of us hoping that the other had the solution. There was no solution. “Shall we just get off?” he asked me, as the doors shut. We were committed. Stuck. Already the woman in the seat in front of Sawyer had asked us to stop him kicking her chair. She will never know how devastating that one sentence was to me. I desperately needed people around me to understand and see that he was having trouble coping with having to sit still, and that was what I got instead.

Thankfully the people in the row behind us were lovely. Sawyer would stand on his seat and peer over at them and when they acknowledged him he giggled and hid. I will forever be grateful to that lovely couple in row 3. They calmed my nerves without knowing they had done it. I’ve always remembered it and ever since that day I have tried to remember how hard it was so that I’m never quick to judge when a child is being hard work and it seems their parents have no control. I don’t always manage it, but I am human after all.

We got off the plane and on to the coach. It was only a half hour journey now, we had nearly made it! Sawyer fought sleep but I couldn’t blame him. We were all now hot, stressed, upset, tired. Tired. He screamed the whole way to the hotel, and finally just as we reached our destination, he fell asleep. Somehow he stayed asleep as we got off the coach and put him in to his buggy. At that point, motion was the only thing that kept him asleep so we kept him moving the entire time. We checked in, I rocked him. We got to our room, we took it in turns to shake the buggy whilst the other one went to the toilet and tried to wind down.

We had made it. We had made it and Sawyer was asleep. For now.

The rest of that holiday followed suit. The days were impossible aside from the 2 hours he would sleep in his buggy after an hour of running on the sand followed by an hour walk in his buggy trying desperately to get him to sleep. The only way he would stay in his buggy was if he was moving. The second you stopped to look in a shop, or to scratch your leg, he was off again and screaming. My birthday was the 23rd November and I spent most of the evening crying. In the bar area there was a children’s play room and a stage which was low enough that all the other children were running around on and playing together. Sawyer ran on the stage with no concept of when to stop or that he would fall off the edge, which of course he did. Other children tried to speak to him and he didn’t notice, or if he did, he didn’t care. He would fall from the stage and run any which way he could, through the crowds. We went back to the room at 6pm, put Sawyer in his cot, and sat imprisoned in the heat watching a film on our phone.

Back then we were new parents of one child, and we were making it up as we went along, like all new parents do. Now we have second child who is Neurotypical, we often ponder what the differences would have been if our children had been born the other way around. I think if Sawyer had been second after Piper, his issues would have stared us in the face from a lot, lot earlier. At the point I’ve been describing, I felt something wasn’t quite right but I just didn’t know what it was. And that’s not something you can casually pop along to the GP about, is it? “Hi, my son seems a bit weird but I’m not sure why. Oh and he likes to run a lot”.

Acceptance of Sawyer’s condition, for me, came in three stages. First, was accepting that there was definitely something not quite ‘normal’ about him. Accepting it and acknowledging it personally speaking. Second was accepting that we needed to seek professional advice. In doing this, we needed to tell family, friends, nursery, etc. The third stage of acceptance came after the diagnosis, when suddenly we found ourselves certified parents of an autistic child. Less than a six months before he was due to start primary school.

Maybe there will be more stages of acceptance to follow. And maybe they will unfold as I continue to write these blog posts. Maybe you’ll even notice it before I do, I just don’t know. And that is another thing that I have learned to accept.

I just don’t have all of the answers.

 

 

 

 

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