I have been well and truly duped. Lead down the garden path, lulled into a false sense of security, and woefully left out to dry. Somewhere in the last 7 weeks, I forgot. I forgot that Noah doesn’t use words to communicate, I forgot that sometimes that language barrier between us causes communication frustration, I forgot that Noah isn’t like most other children… I forgot that Noah is Autistic.
His new school and being around all the other parents and children who are all so similar has done such a good job of making our reality normal, that half-term hit me like a slap in the face. Each blow landed and they just… kept… coming.
The first time it hit me was a failed play date at a local park because an over-tired, out-of-routine Noah, couldn’t appreciate that a public swing has to be shared amongst others. Cue a tantrum that lead into a meltdown, and before long I was buckling him back into the car to come home and trying to hold it together in the front seat.
From that point on I was struggling to force myself out the door with him to go and do “fun”
things. It was easier and he was happier, staying home and playing with his toys. The few times we did venture out were usually to my mums or somewhere “safe” that I knew he wouldn’t meltdown, but sometimes even at home he was pushing on the boundaries so often that his default mood was usually screechy and frustrated.
Having him back home all the time was so much harder than I had expected. I had not appreciated how much we had come to rely on the school routine already. I struggled to stimulate him, to give him just enough freedom without moving the boundaries when he tried to push too hard, but most of all I struggled with guilt. I was frustrated and angry that I couldn’t take him out to any of the fun things I wanted him to do. I felt awful that we weren’t doing any of the activities that I was seeing all the other parents doing, and I felt like a failure again.
It came to a head when I tried to take him into the care home to see my Nan. The last time we went, he had been so happy dancing around and entertaining all of the ladies that I didn’t think it could go wrong. Noah, had other plans.
The visit was over within 20 minutes, after Noah screamed so loudly and for so long that he resorted to biting my chest and my husband rugby carried him out of the home and off down the road to “walk it off”. He did not want to be there that day, and after trying my best to explain that he wasn’t naughty he was overwhelmed, It didn’t help that my nan had came out with all of the usual, well intended but really unhelpful questions and comments. “Isn’t it a shame”, “He’ll grow out of it though won’t he” and “if you have another one it’ll be okay” to pick the least offensive. I made my exit as well, sat in the car and burst into floods of tears. The pity party had well and truly started.
I found myself emotionally back to square one, like it was diagnosis day all over again. For a moment, all I could see were the differences, and all of the ways life was just too bloody hard for us. I found myself counting down the days until he was back at school, and then feeling even more guilty that I wasn’t enjoying our time off together.
I remember the therapist from the counselling sessions I had earlier in the year saying something that really hit home.
“Acceptance comes in waves, and despite what your responsibilities are, you are still a human being with feelings. Just because you feel negatively about something doesn’t mean you’re a bad parent or that you don’t love the bones of your child. Allow yourself to feel how you feel without casting judgement, so that you can move past it and find acceptance again.”
I really tried to put that into practise, and after a few days I started to see where things had gone right over half term.
We went back to swimming, something that we had been missing out on since Noah started school, as he was just too tired in the evenings. He absolutely loved being back, and we even managed to introduce a friend to the session with their ASD child for the first time, and it was a huge success.
Towards the end of the week, we took Noah with us to help at a fireworks display. I took his buggy, with his tablet and ear defenders ready for him to be completely freaked out by the fireworks but he loved them, refused to wear the defenders and sat and watched a 30 minute display in awe. He did incredibly well with the huge crowds of people too. Another success for us.
For every low there is always another high. For every meltdown, theres a moment I’m desperately trying to capture on my phone to cherish forever. This Autism life comes in waves, sometimes they knock you on your backside and sometimes they just tickle your toes in the sand, but each one is an important step forward.
If you just survive half term and don’t enjoy it, that is okay! As long as your child is warm, safe, fed (giant Wotzits count!) and knows that they are loved beyond measure, then that is a successful half term. Cut yourself some slack, and do what works for your family, and not for everyone else.
I really started to feel better at school drop off, not because he was finally going back to school, but because every single parent had also struggled in the same ways I had, and I wasn’t the first to open up about it. Every single one of us breathed a sigh of relief when that door opened and the kids ran in. If that doesn’t show you you’re not alone in how you feel, nothing will.
Be kind to yourself, you’re human too.
