OK, this one’s going to be a bit of a rant, so please click away if you’d rather not witness me losing my shit over what happened this morning.
Really f***ing angry!
As you may be aware, my son Sam (now 11) didn’t take my original diagnosis with cancer, treatment or subsequent month-long stay in hospital due to double pneumonia and sepsis very well at all. He has Asperger’s Syndrome, and struggles to cope with any kind of change. And this was the biggest change his life had ever seen.
He was devastated by the entire situation. His only experience with cancer was that both of my parents had died from the disease. My dad – his granddad – just over a year before I was diagnosed. He didn’t know that cancer patients could survive.
Even though I explained the treatment to him, and assured him that I was going to be OK, he simply couldn’t cope. He began to struggle with anxiety and had frequent panic attacks. In addition, he began to suffer with migraine headaches and was often hit by bouts of sickness and diarrhea.
We’ve since found out that, due to his Asperger’s, his anxiety manifests as physical pain and illness.
Day after day, Sam struggled to cope. He would shake uncontrollably, burst into tears without warning, and hug me tightly, not wanting to let go. Every time I coughed, he was convinced my time was up. He wouldn’t let me walk as far as the bathroom without holding my hand. He lost sleep every single night.
One of the biggest issues was school. This was something we’d not experienced before. Sam loves school; he’s extremely high-functioning and likes nothing more than learning new facts and information. He spends a lot of his spare time at home researching topics he finds interesting, and teaching himself how to understand and explore new things.
Suddenly, everything changed. He became convinced that, if he went to school, I wouldn’t be there any more when he got home. This made his anxiety worse, which made him very unwell. His legs began to hurt to the point where he struggled to walk. As a result, he had more time off school than would normally have been the case.
We knew this was a problem, and so did his school.
The school Sam attends is fantastic. He’s been there since his first day of Reception, and is now in Year 6. Teachers and fellow pupils love his quirky character, and he excels in all his subjects. So, it wasn’t as if my cancer was the excuse he’d been waiting for in order to have extra time off sick.
Kirsty and I worked with the school (I’m a governor there, focusing on literacy) to help Sam as much as possible. They arranged for a counsellor to come in and talk to him, allowed him to take time out to sit quietly if he found he needed a break, and the teachers even helped out by picking him up from home in the morning and dropping him off after school if I wasn’t well enough to drive him in.
It seemed to work, and his attendance began to improve. But, it wasn’t enough for the local education authority. And so, we were encouraged to engage in TAF (Team Around the Family) meetings to see what could be done to help us further.
An educational psychologist came in to work with Sam (she was the one who explained about his anxiety manifesting as physical symptoms), and we continued to help him overcome his fear about what I was going through.
I may have been cancer-free by now, but it was still affecting Sam’s anxiousness.
Since then, we’ve continued to work with the school and, while Sam still has occasional relapses, his panic attacks are fewer and with more time between. He continues to excel in his lessons. He was the only pupil from his year group to pass the 11 Plus entrance exam for the local grammar school. And, he was voted to become the school’s Head Boy by his fellow students.
Things are gradually getting back to normal.
He did, however, have a couple of days off last week thanks to my new diagnosis causing him to panic all over again. Thankfully, we made some good progress over the weekend, and he’s back in school today.
So, why am I so angry?
I’m angry because, after driving Sam to school this morning, Kirsty didn’t reappear after dropping him off inside. In fact, she didn’t come out for a full 45 minutes.
It turns out she had been ambushed by the local education authority’s attendance officer who, according to what Kirsty has told me, isn’t sympathetic to our situation at all. I won’t go into too much detail as there are likely to be follow-up meetings, but here are the highlights…
- We shouldn’t have told Sam that I had been diagnosed with cancer. Excuse my French, but bollocks! He’s smart. He would have worked out something was wrong very quickly indeed, particularly when I started to have daily radiotherapy sessions and spent an entire day each week at hospital undergoing chemo.
- Other children she has dealt with were back in school the day after one of their parents had died. Hooray for them. Were they autistic? Were they in school because the surviving parent had a lot to deal with but no-one around who could help with childcare? Don’t try to guilt-trip us with that.
- We should have a doctor’s note for each of Sam’s absences. We can go one better than that. We can give you a list of all the times he’s seen the child counsellor and educational psychologist who have been helping him develop coping techniques for his ongoing anxiety. Or discuss his recent appointments with the paediatrician where we’ve explored extra strategies for his Asperger’s.
- We should have taken him to the doctor for the problems he’s had with pains in his legs. We have, and we were referred to a podiatrist where there’s currently an 18-week waiting list to be seen. His first appointment is this Thursday. We suspect he’ll be fitted for special insoles in his shoes to help ease the pain in his tendons, as that’s what happened with his older brother, Arran.
- We should have just gone out and bought him some insoles. They’re not just standard off-the-shelf insoles, you muppet! The ones Arran had were specially moulded for his feet and, if Sam is prescribed them, his will be, too.
- Do you know what a migraine really is? No, we don’t – even though Kirsty suffers from them and the fact that they run on her side of the family. We just know that Sam has violent headaches that cause flashing lights and result in him vomiting. He has to lie in a dark room when he has one.
- Have you tried giving him Calpol for his headaches? No, we don’t believe in science or medicine. Instead, we sacrifice an asthmatic kitten and smear his forehead with its blood before dancing naked in a circle around his bed while singing the theme song from Teletubbies backwards.
- It’s probably just because Sam doesn’t like school, and doesn’t want to come in. Oh yeah… I wish we’d thought of that. That explains him working at a level several years above his actual age and being the only child in his year to pass the 11 Plus exam. It’s so obvious now.
- You need to be able to prove there is a genuine reason for Sam having time off school. Er… does cancer count?
And, best of all…
- We’re considering taking you to court, which will result in a prison sentence. Really? Is that a prison sentence for the cancer patient or his full-time carer? Actually, you know what? Do it. Go for it. Let me get up and have my say in front of someone who doesn’t think we’re simply scum who can’t be arsed to take our son to school because it’s not important.
OK, calm down, Tommy. Getting irate isn’t going to do you any good at all. Especially with someone who had already made her mind up about the entire situation before even meeting us. Kirsty says the attendance officer was shocked to hear that Sam did well at school and had been made Head Boy.
Yeah, I’ll bet she was.
Now, if you’ll excuse me, I’m off to hit things with my walking stick.
Oh, and I have to find a little cat with a chesty cough…