Usually when we talk about transitions in supporting someone with FASD we talk about the little moments most people take for granted: the getting out of the house and into the car, the getting ready for bed after a busy a day. That’s because these moments can be ripe for escalation and chaos if they are not well prepared in advance. For a person with FASD, transition can trigger anxieties or they may have trouble switching cognitively from one task to another. They may have trouble estimating the time involved or they may simply be too on edge already to have another demand placed upon them. Anyone living in a family affected by FASD knows things can skyrocket quickly. A lack of impulse control can sometimes mean words and fists and heavy items can be flying when the person’s fight or flight instinct kicks in. Dysregulation might mean the entire seemingly simple moment of transition can explode. Moments can be fast and furious.
But this post is about another kind of transition. The big kind. The moving from one phase of life to another. Not unlike those micro transitions, there are so many ways these macro transitions can go haywire. As a parent/carer it’s intimidating and nervous-making.
No doubt this will not be the last post about this topic. But it’s the first about our little one transitioning into adulthood. This moment where we are now is known. As a family we’ve learned how to cope here in this stage. Suddenly I find myself wanting to hold onto to ‘now’ forever.
But as they say, time and tide wait for no one.
Two things happened this week that leave me thinking these thoughts. Our son and I went to see Little Mix at the O2 arena. And we visited a local college to prepare for the next phase of his schooling.
The Little Mix concert involved nearly a year long wait. The tickets went on sale before Christmas last year. That’s a lot of months in the life of someone with FASD – of any kid – but especially for a young person with FASD. For years he has been a die-hard Little Mix fan. His indelible mark on the mainstream secondary school he attended was winning his school’s talent competition as an incoming Year 7 student performing “Salute.” Even still, over the months of waiting for this concert we went through waves of him telling me he didn’t want to go because there would be too many people, it would be too noisy, it would be past his bedtime, and a whole string of other related anxieties. Just getting there on a multi-train journey was challenge enough.
We decided to really splurge and stay at a hotel connected to the 02. This was more for survival than luxury, since we had for some reason chosen tickets on Halloween and there was no way our guy could have handled public transportation through London at 11:00 pm on Halloween after the full-on sensory experience of the concert. It had been a couple of years since he had last seen a big show like this.
His expectations were high but his nerves were raw. We weren’t able to book the special needs seats for the show. So we went to the arena early. I was wearing a sunflower lanyard with an ID that shows he is officially registered with our local additional needs database. Even though there were only about 30 people ahead of us in the general queue, our guy was anxious, asking to leave, ready to miss the whole show.
Desperate and feeling intense parental pressure to somehow ensure this long-awaited night didn’t end with a big fizzle before it began, I showed the badge to someone who worked there. I asked, “Is there any way you can help us? My son has a disability and it’s too overwhelming for him to wait in this queue.”
And that’s when it happened. My son looked up at me, “Do I have a disability?”
In his 15-1/2 years of life, he had never heard me say that word. In every doctor’s visit, every SENCO meeting we have been adamant that our guy not hear phrases like this – we would insist that the professionals wait until he was out of the room before going into details. We would demand all discussion in front of our son was positively framed.
We were being led to another, shorter queue so my reply was quick. “Yes. It’s because of FASD. It makes it hard for you to cope with things like being in noisy places and standing in lines. There is another queue we can use.” Access to this other queue, a special elevator and a quieter holding area before we could get to our seats made the rest of the night possible. We weren’t gaming the system. He needed this. He had a right to be there.
But the ‘d-word’ hung there and over me all night. What had I done?
The night was a success in the end, even if I was on high alert for the zillion ways it could have unravelled. I wasn’t allowed to sing. I couldn’t tap my foot. He wore a pair of new ear defenders (“these are the same kind we have a school”) but was quite concerned about noise levels. We were able to avoid the after-concert crush by using a special walkway back to the hotel, so we were thankfully in bed 20 minutes after leaving the arena. We had an awesome next morning enjoying the hotel’s spa. The quite amazing ‘relaxation pool,’ steam room, sauna and glowing mini-mountain of crushed ice provided all the proprioceptive and sensory input anyone needed. This mum realised she needed this as much as the not-so-little guy.
I began to forgive myself.
The reality is that our son has rights as a person with a neurodevelopmental disability. And he is getting old enough now that he needs to learn those rights and how to self-advocate. He’s been doing more and more of this in school and at home. (“My brain can’t handle that” is his main phrase to tell us when he needs a break). But out there in the world, sometimes we need to use the buzzwords that others recognise.
We will of course revisit that conversation time and time again and discuss it in different ways and ensure he knows that the ‘d-word’ does not mean ‘less than’. But it is indeed time to help him self-advocate in the wider world. He’s transitioning into adulthood. And while his transition will be on a different time scale and the goal is more about interdependence than independence, he still needs us now to start that preparation. And this means more than just ensuring he has ‘learning for life’ skills as his school calls it. He needs to be a self-advocate in a system that is harsh and that ignores too many. He needs to know that he has the power to wave that badge and ask for another queue even if I am not there to do it for him. To seek accommodations from an employer. Or to stand firm when some FASD-denier or cost-cutting and overworked bureaucrat belittles his condition or seeks to rescind his benefits as happens all too often to adults with FASD.
The second thing that happened this week was going to the local college’s open day (in England students must be in school until 18 but can switch at the age of 16 to ‘colleges’ that offer wider ranges of programmes). Yet again, we weren’t sure we’d be able to get there. It involved going out in the early evening, never easy once he’s come home from school and is unwinding from the day. He decided to bring his new build-a-bear rainbow cat called Sparkles. The designers of the 02 are clever people, placing a mall all around the arena entrances. No doubt we are not the only concert goers to have spent an extra wad of money there. And this workshop with its accepting employees explaining the scented inserts and beating hearts and soft plush huggable toys was pitched at just the right level for our son who needed some reassurance and comfort in an unfamiliar place.
So there we were at the college open night, carrying the unmissable Sparkles and concerned that the too-small-now silver-sparkled high heels our son was wearing might be too uncomfortable for walking around the campus. But he was insistent. He knows he won’t need to wear a uniform at college and this means he can choose what he wears, this was not the night to battle over attire even if on practical grounds. (When they were making Sparkles’ birth certificate at the build-a-bear workshop it was the first time I had seen our guy tick the ‘prefer not to say’ box for gender, so we did likewise when filling in his college application.)
I had not anticipated that this was a general open night. There we were waiting in yet another chaotic queue, this time without any lanyard and also potentially needing to escape if our guy became too overwhelmed. Once we got past the initial scrum and were brought to the separate building that houses the inclusive learning section all was well. But standing there in that glorious mix of a mainstream school hustle and bustle with kids who seemed so much older and who were towering above our guy, those old familiar worries crept up on me. Will he be safe here? Will they bully him? Will he be understood? Is he ready?
We have had 3 years where he has been in a protected environment at a specialist school and that has allowed him to relax and to grow. I know this college also will protect him but it’s less isolated. To get to their inclusive learning building you have to walk right through the main campus.
“I only have one more year of school,” he said that night and that’s when this hit me again. We haven’t really been talking with him about his future. “You can stay in school until you’re 25 if you want.” His eyes popped out of his head. “It’s not like school now. There are all kinds of things you can do. Music or whatever you want. You can do a supported internship somewhere. There are lots of options. You don’t need to decide now.”
In other words, that Education Health and Care Plan was hard fought for and every ounce of its superpowers will be utilised.
You have a right to education and supported internships, my son. And we have a job to do to help you understand those rights and all the other rights you have.
A friend took me to task for using the term ‘disability’ when I told the story of that night at the 02. Of course. I was appalled at myself for using it. I know that our son has strengths. I celebrate diversity and uniqueness. I am well aware that the term is fraught with negative connotations. As I said, this was the first time in 15-1/2 years he heard it. And I am kind of proud of that. But sitting in that relaxation pool where he was pretending the overhead water jets were the ice bucket challenge, I forgave myself. And realised we can’t ignore the word either.
We must reject the stigma around the ‘d-word’ and ensure our guy is not ashamed of claiming the supports and benefits that society has legislated are his by right. If that means at times waving a disability pass, then we have to show him how to do that with pride and with strength, not to hide in a queue that might be suffocating or drowning him. If we don’t lift him up now and prepare him for those moments then, who will?