Why do you look like a skeleton?

It was 5pm on a Saturday and my son asked me…

“Why do you look like a skeleton?”

And when he asked me this I could do nothing but laugh because my son was absolutely right. I did look like a skeleton. I was absolutely dead on my feet. Dead. On. My. Feet. And I will tell you why.

A while ago my son had asked me if I could throw him a birthday party for his birthday. Now knowing what you know about my son do you think he is the right child for a birthday party. No me neither. But he was adamant. Absolutely adamant. We had always celebrated his birthday in our own way, we had had a BBQ for him one year (he hated that….well that’s what he said when we got to that page in his photobook. Read about that here…..Can we look through my photo book? ), one year we went to a theme park as a family, he enjoyed that but he was only young, and I’ll never forget before setting off on this day out it had been horrible. Looking back now I realise my son was having a meltdown. And last year we went to ninja warrior which he loved but we had the mother of all meltdowns in McDonald’s after. So I was reluctant to do a birthday party…I was aiming for a quiet birthday. But he asked me over and over again to give him a party and so I knew I would have to give it a go. I’d learnt so much about my son that if I was gonna do it I was gonna do it to the absolute best of my ability. I would make sure we would get through this without a meltdown. And even if we did have one I would be much better prepared for it. So I agreed.

We settled on a party at the local trampoline park. My son loved trampolining and I knew this would suit his needs. We got a guest list going and I sent out invites. I’m not kidding for two weeks previous to the party I started dreaming about it. Well actually nightmares. I would wake up in a cold sweat after being at a kids party in my sleep. Every single night for two weeks. It was clear that I was dreading it. I guess I still wasn’t sure I had made the right decision.

It got to the Friday before the party and I picked my son up from school and I knew he was edgy. I also knew this was the start of it. I knew the drill. I needed to regulate him. My son had sensory issues that forced him into fight or flight mode very easily and that is where we were at. I knew if I did some sensory activities with him this would help. The kind of activities that helped my son were big energetic activities, rough play, running and dancing etc. I took a deep breath and I started what was to be the longest shift of my life. I offered to play goalies. This was a game we played frequently where I threw a cloth ball and my son dived to catch it. He loved diving on the floor hard, it made his body feel nice he said and I knew it made him feel better, it regulated him. We went into his room to play this but he started crying. Seriously crying. He had a rug in front of his bed that he wanted lining up correctly, he wanted to stand in line with the rug and it was all off. This is what he said anyway but I knew it wasn’t just about this. I knew once I got him going throwing himself on the floor this would help so much. It took a while, I remained quiet and patient, I adjusted the rug over and over again and each time he told me it wasn’t right I tried again until he said it was in the right place. At this point I text my husband because I knew I wouldn’t be able to offer anything to anyone else in the house until my son was asleep so I text this….

And I knew my husband got it straight away. I needed to be completely present for my son. No distractions. No checking my phone. No talking to other people. Just being there for my son. We finally started playing. I wasn’t throwing the ball right apparently. I knew again this wasn’t the actual issue so I didn’t react just tried to throw it different, time was the answer here, time and sensory regulation. With each throw I did I felt the mood lift. But I knew this wasn’t the end. Every time my son thought about the party he went into fight or flight mood. He would be ok for a while then I could feel it kick in. From getting in from school to bedtime we did lots of big activities, his body needed to move. We played goalies, we went outside and played rugby, we threw beanbags, I tried not to overwhelm him with anything, no chatter, just lots of movement. It was relentless. Four hours of living on the edge. And unless you witness this for yourself or have lived experience of something similar I don’t feel I can ever fully describe or do the situation justice as to how fraught it is. It’s a very unique feeling to have and go through. And go through it we did. We got through to bedtime and he went to sleep, sort of.

He was very unsettled and woke up twice during the night both times to ask if he could have a shower in the morning and then he woke at 5.55am ready for the day. I was still recovering from the night before, I had hardly slept but we go again. Again I made him my complete focus. He was very clear that he wanted a bath or shower before the party. This wasn’t really surprising because he was a very clean boy. He washed his hands a lot and when he washed his body he was the most thorough washer I had ever seen. He washed every single bit of his body, his neck, his ears, his toes. Every single bit. It was actually fascinating to watch.

Once he was clean he was ready to go to his party. We decided to go to the party in two cars, we could all fit in one car but I felt the situation required two cars, this meant more dedicated time for my son with me and he liked that. The party went great. We smiled, we laughed, we made small talk, we sang happy birthday and nobody would ever know what my son was actually feeling or what I was feeling. Everyone had a great time.

And in the blink of an eye it was done. On the way home my son said he had had a great time and that he wanted exactly the same party next year with all the same people. It made me laugh because I knew that would be exactly what he wanted next year. He’s a stickler for wanting everything to be the same always. And although the party had gone well it was the after that needed careful handling. So I knew that my same plan I had put in place the night before would come into effect when we got home. Except first my son wanted to open his presents from the party. So when we got home he took everything off the sofa….I wasn’t quite sure what was happening at first but when he started to lay his presents out on the sofa I understood what he was doing. Every year on his birthday I arranged his presents on this particular sofa and this is what he was doing. He arranged them all nicely so they were neat and tidy and then opened them all up. And at this point you would think ahhhhh its time to relax, lets get a cup of tea. That’s what you are thinking right?!? I mean that is what I was thinking but I knew that wouldn’t work for my son. That would be disastrous.

We were hitting the crucial point so I did what I did the previous night. I did lots of sensory activities. From 1pm till bedtime that is what we did. Lots of activities. Lots of play. Lots of dedicated time together. I never sat down and relaxed once. I didn’t dare zone out or go off on a daydream. I was there. Completely and utterly there for my son. I did exactly what he wanted. By 5pm I was so tired. I had done this the night before. I had been woken twice in the night then up from 5.55am. I had done the same on the morning. I had been at the kids party and now I was doing it again. And I know this isn’t really about me but I was resembling a skeleton so when my son asked me…

“Why do you look like a skeleton?”

I could do nothing but laugh because I did. I knew I was on the final stretch. Imagine a marathon runner running the last mile to the finish line, that was me. So close and yet so far. But somehow I managed it. It was only at bedtime that I felt the wheels start to come off slightly, my son struggled to pick his bedtime books and he did get mildly agitated but he managed to sort himself out. And I believe he could sort himself out because he was regulated.  It’s because of the day and the amount of effort we had put into it that he was able to do that.

Once he was settled in bed I went and sat in the living room where my husband was waiting for me not with a brandy like last night but with a bottle of beer. I flopped down on the sofa and took a long drink. I didn’t want to complain about the day because ultimately it was very successful but this level of activity and effort was unsustainable. Yes I had achieved it and I was so so pleased but I was a wreck again. This kind of wreck was much easier to deal with than the wreck I am after a massive meltdown but still hard. I was hoping that the sensory assessment I had arranged for my son to have from a sensory occupational therapist would help us know how to help him better. And also provide some evidence for school to implement some support for him there. Making school better would also help his home life. It would enable him to stay regulated all the time, or the majority of the time (I hoped anyway). But we had done it for today. I had set out with the goal of making sure my son enjoyed his birthday party and he had. And he had enjoyed the before and after too. And I sat on the sofa for the rest of the night and my husband dedicated his time to me….he brought me drinks, and food and I sat incapable of anything.

The next day something completely insignificant happened that was annoying and that was when everything I had been holding in came out. I started crying and I couldn’t stop. I shut myself in the bedroom and just cried. And it wasn’t about the insignificant thing at all, that was just the straw that broke the camels back. It was about how much effort had gone into that one day. My son had some lovely memories, as did I and the rest of the family, and I had some good pictures for the next photo book but that didn’t show the 24 hours of effort that went in to my son to be able to have a two hour birthday party. This is something that I’m sure parents of neurotypical people take for granted, something I have taken for granted in the past. But something I will never take for granted again…..never ever.