“I don’t want to say it’s his attitude but….”
Here we were. Parents’ evening, Year 11. We’ve come so far in the many years of school. We’ve gone from parenting a young child whose needs we did not understand at the time, fighting back against those nursery teachers who thought he didn’t know any words and that first educational psychologist who told us he was ‘incapable of learning.’ We’ve made it through the initial diagnoses of ADHD (where the retiring teacher told us he was the first child she’d ever had with ADHD in her 30 years of teaching) and past the autism diagnosis that turned out to be incorrect (where one of the country’s leading children’s hospitals somehow missed the fact he has 100% of the facial features identified with Foetal Alcohol Syndrome). We finally got the FASD diagnosis that then took a while to sink in and to comprehend. After that, we started the phase of arriving at teachers’ meetings loaded with binders of information having highlighted relevant bits of his cognitive profile for anyone educating him (a task made harder once he hit secondary school with the multiple teachers and more fragmented home/school communication). There were superstars in his story but for the most part most teachers didn’t get it. Then we had the very welcome switch to a specialist school three years ago, with a whole new playing field that has changed so much for the better.
And yet, even here, at the last parents’ evening of his school experience before he heads to an inclusive learning programme at a sixth form college, here we were sitting across from a young teacher who simply was not listening, who had us pegged as parents who were making excuses for a teen who “knows what he needs to do” to get changed and ready for PE. She rattled on, convinced of her belief that he “just needs to join in and he’ll be fine.”
She was speaking a mile a minute in a noisy room, oblivious to the fact that our son (who was wearing headphones to dull the background noise) was not able to follow her rapid chatter. Worse, she kept talking over us, over me, as I was trying to explain. I felt that old familiar surge of my own blood pressure escalating. I simply could not believe she would not slow down and listen. It didn’t help she was talking so fast that she called our son the wrong name 5-6 times. We weren’t even sure why we were having this conversation. He had been doing sensory PE lessons that were working, but which have been removed without prior consultation.
Our son has never had positive experiences with Physical Education (PE). Here’s why:
- Getting changed in a crowded room in a short period of time requires a level of executive functioning that is challenging for him.
- He has trouble organising his backpack.
- He still cannot easily button buttons due to the way his hand formed. So, his school uniform and PE polo shirts are hard to manoeuvre.
- He has sensory issues with changing in a cold room.
- He has sensory issues with the noise.
- He cannot estimate how much time he has to change and is easily distracted.
- He is not comfortable in a male changing room as he is gender non-conforming.
- School have arranged access to a special ‘comfort room’ but apparently leave it up to him to go get the key and they leave it as an option.
- He has at times put his PE shirt over his regular shirt but this young PE teacher lectured him in front of us about how smelly teen bodies can be.
- He gets confused with tidying up the clothes and is anxious about losing things.
- PE is towards the end of the day when he is stressing about ensuring his phone has charge so he can have something to focus on in the taxi ride home (the teacher has arranged for him to charge it in their office, so that’s a positive.)
All of that anxiety and stress happens even before he even sets foot in the gym. Once there:
- PE classes tend to be based solely on shouted instructions from the teacher. Our guy has very limited receptive language skills. He gets lost, confused.
- Many team sports require a level of advanced thinking – if player x goes there, I should go here. This sort of thinking is hard for our guy, especially when under pressure – and especially under social pressure to want to help his team (his friends) win.
- The gym tends to be loud and echoing. This disturbs him.
- Even with sports like trampolining that he excels at, there are often long gaps to wait until it’s his turn.
- Though he has the medical okay for it, he is still hesitant to do some activities because of his hand operation (this teacher didn’t know about the tendon surgery).
- Also due to his FASD, he has fused vertebrae and fused ribs that mean he can’t do any contact sports.
- He doesn’t really understand (nor do we) why he can’t do sensory PE any more.
- She thinks it’s great he’s “so bendy” but doesn’t understand that is partly due to hypermobility and doesn’t recognise he also has some very tight muscles that can make some things hard (he wore special shoes and had Occupational Therapy for years for this).
- And then when the PE class ends, it’s time to organise himself to get back (supposedly) into school uniform, though he often doesn’t change again as it’s the end of the school day. Does it really matter?
“He knows he can ask” if he has any trouble, she said. What exactly can he ask about all of the above? And if she won’t listen to us, what chance does he have? His relationship with PE is complicated.
Can we not just assume there are reasons why it’s hard for him to engage in PE?
Can we not just have someone gently guide him to the ‘comfort room’ without making him go for the key?
“It’s important he’s on time so he doesn’t miss the warm-ups.” Well, no kidding. Can he leave the prior class a little early to have some extra time to get himself sorted?
Most of all, why can’t he do the sensory PE that was working? (It was integral as the school has been cutting back on his access to sensory supports, one of the main strengths of the school prior to these changes.)
I have gone on at length here because it’s one small example of how some throwaway comments from a distracted teacher can send parental stress through the roof, let alone whatever impact it was having on our very tired son by that point in the parents’ evening.
This constant push from school for independence is hurting him. Interdependence is the goal.
This sort of conversation happens time and time and time again throughout the educational journey of a student with FASD. It’s so unnecessary. And if I found myself defensive and feeling unheard, what about all those who are less resilient, who are having their parenting questioned right and left by professionals who don’t get FASD at all. How is it the professionals don’t understand the impact of this constant assumption the child just needs to make an effort to focus a bit more, try a bit harder, do what he knows how to do. We were so sad reading his school report. These phrases have crept back in.
Some do ‘get it.’ The ICT teacher (who had been his teacher previously), told us how well he’s doing, how he’s caught up with others even though he entered her class later in the year (this was the first we’d been told about this). She’s been using his enthusiasm for music and technology to get him to expand his knowledge and to learn other computer programmes. The English teacher has decreased pressure on national exams and allows him different options each day for how to participate, depending on how he’s doing. It’s just sad that even in a specialist setting, even with a solid EHCP and diagnoses in place, even then the type of support he receives can be so variable.
With FASD, what a child knows and masters one day may be inaccessible or harder the next. This is not wilful behaviour. It’s the result of compromised brain wiring.
Sorry, but this has nothing – zero, zilch, nada – to do with ‘attitude.’ At least not his.
Some links to education resources are available here.