Sam and Alex’s story
Sam and Alex are identical twin boys. They lulled us into a false sense of security by being lovely easy babies. They came a little early but grew fast, ate well and slept like clockwork. Once you got used to doing everything twice we thought having twins was pretty easy really. It was easy to brush things off, like when they joined rugby tots and were the only ones doing their own thing, or how cuddles sometimes came with a bite on the shoulder!
They started school nursery aged almost 4 and I expected they would do well as they were clever, funny and bright boys. However. I was called in to their class one day and told they don’t seem to like joining in with others and prefer to wrestle each other on the carpet instead of sitting (as they wrestled on the carpet having a great time). The next meeting was a few weeks later in the headteacher’s office, with several members of staff and an A4 picture of a bitemark on someone else’s child. There was mention of autism and special schools almost straight away. It was a massive shock to us.
Then came many appointments and people coming to watch them in school and talk to us, reduced timetables that didn’t make them hate school any less, and numerous assessments of different types. They carried on being the terrors of the nursery. Kicking, hitting, biting and spitting, sent home early, always in the bottom of the behaviour board. No incentive or punishment worked for long. I varied between trying all the advice in parenting books, being in denial about autism, writing really good referrals for autism (took three goes over three years to get accepted) blaming my socially awkward self for avoiding baby groups like the plague and the usual mum guilt etc.
When the boys were in Reception we saw their consultant again. She said they are very sensory but our local NHS doesn’t treat sensory on its own, but it was a new lead, so I dove into the Out of Sync child and found out someone had written a book about my kids without meeting them. We got a private OT assessment and confirmed multiple sensory issues and recommended some aids (sorry Marion) which helped a bit, but they still had regular meltdowns at school despite now having 1:1 support from EHCPs.
We saw the private OT again but the suggestions didn’t help this time. The boys school has been incredibly supportive, but were still worried that they were letting the boys down and that they didn’t seem to be learning anything.
We got in touch with Sensory People around December 2021 after another behavioural incident and feeling at a loss of what to do sent me to google. At this point they boys had just turned 7. Alex could read, Sam was pretending he couldn’t read, and neither could write much more than their names if you could convince them to hold a pencil without drama. They were being brought out of class every day. I dressed them, brushed their teeth and hair for them (with drama) and they were often having angry outbursts over little things.
The first few sessions, I was pretty sure we were going to get kicked out for bad behaviour. But I’d seen Marion calm down Alex with a shoulder squeeze and getting him to stamp his feet and he was suddenly focused and back in the room (field), and that was like witnessing some witchcraft and I wanted some of that, so we kept coming twice a week despite much protesting from the boys, then later some doubts from school as the boys decided they would improve behaviour at home first school last.
It’s been a long journey and change almost crept up on us.
The boys have just finished year 3. Alex was unanimously voted onto the school council from his class. He writes giant pages of plans for the Roblox games he designs. Sam is the best in his class at the log trail and expert handler of stick insects. They both read at least one entire Diary of a Wimpy kid book a day. Sam writes nice notes for his favourite teacher.
They both passed their year 2 SATS and are pretty much where they need to be academically right now. I don’t dread the school pick up anymore as I don’t get a list of incidents. The only one who has a tantrum during the school run is me. They brush their own teeth, let me brush their amazing long hair (with no drama) and are calmer happier boys. They are well-liked at school by staff and pupils for their humour and quirky personalities which they can show off now they aren’t having meltdowns all the time.
Last week we went away on holiday to Blackpool and they managed a full five hours in the theme park. They went on rides that get their clothes wet (historically a wet spot on clothes would be a full screaming meltdown), they ate non-McDonalds chips, and did queues and lots of walking with zero tantrums. They want to go back every year. Their dad and I couldn’t believe how smoothly the entire week went.
Cool Kids has made a huge difference and I’d definitely recommend it. We still have a way to go but things feel more hopeful and manageable and most importantly a lot less stressful for them and us. Do stick with it, it is worth it.