I feel I need to write this post, as I know many of you love and support our family, and I am incredibly grateful for this. Anyone who knows me personally, knows I’m pretty tough.
Do no harm.
Take no shit.
So it may surprise you to know that I’ve spent the last four days crying sporadically and openly to whoever is unfortunately enough to answer the phone to me.
I’ll start by dissecting the issues we have been going through, heading back to the beginning.
Jack, as you know, is Autistic. He is by far not the worst case, but he uses visual aids to support his communication, hates unplanned changes, and has deep interests in a variety of things, one of which is bees. His interests can be very consuming.
In February, Jack was in a class taking mock SATS tests, and that day, he came home FURIOUS. I found out that the tables were rearranged and that he was asked to work in silence. This appeared to be something that has not been done before, at least not for long periods of time.
Within a week, the obsessive speech patterns started. “I don’t want to go to school.” “School is the worst.” “School makes me sad.”
It would be the first thing he said on waking, and the last thing he said when he went to sleep. It was constant. If I asked if he wanted a drink he would reply, “yes please, but I don’t want to go to school.”
In June/July this year, Jack told me one day he couldn’t breathe. He does has asthma, so I kept him home to monitor, as it can escalate quickly. As the day went on, it became apparently he was ok. He normally needs 6-10 puffs every few hours of his asthma is bad enough for him to complain. He took 2 puffs in the morning. That was it.
Given that this was a Friday, I let it mull over the weekend.
On the Monday morning, he was tearful at the prospect of attending school. Proper sobbing and begging. So I made the decision to keep him home, called the school, called the service responsible for his mental health, and hired a private Speech and Language therapist who has coaching qualifications and challenging behaviour experience. She came and did a little work with him, and gave me some ideas to help him get back to being OK.
We got him through the summer term, and we got him back to school in September. And for a few weeks it was going well. We had a holiday and he totally reset his obsessive thoughts, and he was doing so well. We went into the half term with him being a bit of an arse, but it just seemed like he was tired.
Since the half term holidays, the decline has been profound. Jack has had to be forcibly handled into school. He has been violent when he typically is affectionate and gentle. He has been absconding (or attempting to abscond) which again is traditionally not a typical behaviour of his.
We had a meeting on Friday, which I will detail in a separate post, as that in itself was a pretty significant moment in our journey. But Jack is not coping in mainstream school anymore, and it is very possible that yesterday was his last day in school.
And so, here I am, at 1am on a Friday morning, exhausted and sad and worrying about what the future holds.
Where did it all go wrong? Have I made the wrong decision somewhere along the line in the last 9 months? Could I have done this differently?
Were the classroom changes in February the culprit? Or have I missed something else? I’ve been focusing on my personal pursuits in the last 9 months – did I get too focussed and forget my child and his needs?
I planned to unpick this in more detail at some point, but honestly I don’t think I will ever pin this down to one single event.
My preliminary findings for this “autopsy” are “cause of death unknown”.