we-love-a-child-with-fasdBy @FASD_Dad

This morning was good. Our son woke happier than he has for several days. He ate some breakfast and watched some Tom and Jerry. When the time came he was happy to get dressed. And after ten more minutes of videos – when he searched for and found clips from Titanic which his English class is studying – he put his shoes on, picked up and his bag and hurried out the door. School mornings are rarely this easy for him or us.

Since today is Foetal Alcohol Spectrum Disorder Awareness Day, it’s worth reflecting on the week we’ve had as school started again. Our son’s full Foetal Alcohol Syndrome has made it a very difficult few days, and it all happened because of a detention that should never have been and a teacher who hasn’t read, or at least hasn’t understood, information about FASD and our son despite the best efforts of the school SEN team.

Our son went back to school on Monday. He goes to a mainstream secondary school, he’s now in Year 8. He gets a lot of support from the SEN team and many of the teachers are excellent, differentiating his work and making a real effort to adapt their lessons to his needs. His FASD means he is a very visual learner, with pictures and videos a key part of the education process for him. Using computers, tablets and other technology also make it easier for him to access subject matter. But even so, he struggles with maths or abstract concepts.

The route back to school wasn’t easy. As the Autumn term approached our son became more nervous – worried about his timetable, who his teachers would be, where his locker would be and every little detail that was outside his control. He became easily dysregulated, and it was hard for us to keep family life on track in the days running up to last Monday.

And then it happened.

In the second period of the new school year, an English teacher gave half the class detention for not completing homework on the book Holes over the Summer. Including our son. And his world fell apart.

He’s afraid of detention, even the possibility of being given one increases his nervousness of school tenfold. Coming so early on his first day back, this was a hammer blow.

The class had been studying Holes in the Summer term. This is not the first time this teacher has taught our son.  He struggles with novels at the best of times. Reading long chunks of text is extremely hard for him. He finds it very, very difficult to concentrate, he loses the thread of a story easily. This book was doubly difficult. He didn’t like the story about children being randomly punished by being forced to dig holes. When it came to the back and forth in time sections of the novel, forget it. He just didn’t get it.

He’s so keen to do the right thing he even tried to do the homework over the Summer, despite having found the book almost impossible to understand last school year. One task last term was to do a newspaper article on the significance of a bi-racial kiss in early 1900s America. Forget it. He simply didn’t understand what was being asked of him. The levels of abstraction were such that his damaged brain could not get there.

Knowing his difficulties, the SEN team has worked for a differentiated set of work for our son. The teachers are supposed to respect this. He wasn’t even supposed to do this homework, let alone be punished for not doing it. He fell apart in tears in the class as the teacher berated half the class for not doing the work.

And the consequences of not respecting his need to access work in a way he can understand, of failing to respect his right to be educated in an appropriate way?

On Monday evening he had a meltdown. A big one. Things flew, swearwords too. It wasn’t a happy evening.

On Tuesday morning he refused school, terrified of another detention. He screamed, he sobbed, he hid in his bedroom. We eventually got him calm enough to get to school by 11.30. But that evening, his world fell apart. He had a meltdown like no other. His levels of anxiety reached a peak in a crescendo of wailing and sobbing that wracked his body. Cut off behind an invisible barrier, he was broken by experience. This built up and then flooded out of him over hours until finally, exhausted he slept.

On Wednesday morning as anxious as ever he refused school again. We were able to get him there by allowing him to go out of uniform to speak to the SENCO. He did stay, but not happily. In the evening he couldn’t manage guitar lesson, although music is his biggest love and this was something he had begged to do. Dysregulated and ready for meltdown, as it was a hot day we let him go to the pool instead.

On Thursday school refusal again, and again he went out of uniform and only because he could follow me as I rode his scooter until he was ready to hop on, and only into the learning support room until he was calm enough to join his classmates for the day.

And today. Today it’s all forgotten. Titanic is filling his imagination and I left him with his TA drawing a picture of a First Class passenger on the ship as they got ready for the day.

But the week has been lost. Our son has been torn apart for days by anxiety that should never have been forced upon him. A busy teacher with insufficient training in dealing with special needs hasn’t taken the time to understand our son, and has done him damage. How much we won’t know for a while, but possibly a lot. Enough this week for us to think hard again about local SEN schools and for a family counsellor to rush an appointment with their service’s other professionals, so worried was he about our son’s anxiety.

It is government policy to mainstream kids with special educational needs where possible. They don’t provide the resources or the training for that, but that’s the policy. We are legally obliged to send our son to school. They’re legally obliged to educate him. They have to meet his needs.

The SEN team does a superb job. They really work with him. They bring in outside experts to get advice and support. They provide the tools he needs to get through the day. Having never knowingly worked with a kid with FASD before, they educate themselves about his condition generally, and the work to understand him in particular. So do many of his teachers. His geography teacher last year said he shows ‘signs of brilliance’, and he did that in her class because she looked at him and saw him and understood him, and provided work for him that he could do because it was in a form he could understand.

But some don’t. Some are just too busy with the stresses and strains of modern teaching. The lack of resources, the huge amount of reporting of data, the strains of an ever changing curriculum, the lack of training on SEN teaching all take a toll on their willingness and ability to teach our son in the way he needs to be taught.

That’s why FASD Awareness Day is so important. As many as 5% of people may be somewhere on that spectrum, most undiagnosed. Awareness is vital, in the first place, for prevention. No-one needs to go through life with this preventable disability. In the second place, it’s vital as the brain damage of FASD means that our son and everyone with the condition needs life-long support to deal with the stresses and strains of everyday life. For our son, this means his teachers need to know about and really get what FASD means. How they have to do their job differently to accommodate special needs that aren’t his fault. Being aware of FASD means being able to give a kid who’s struggling the tools he needs to get through the day when even walking through a crowded corridor from one lesson to the next is traumatic. Be aware.

Please see the education resources page ideas on how to help a person with FASD in the classroom.