By SB_FASD
It’s been two months now since our teenage son with FASD has been out and about. No school. No weekend visits to the charity shops. No seeing friends and family. Just the occasional dog walk. He’s had, if we’re honest, probably too little exercise.
The days now are gentle, rolling one into the other. We are not attempting home schooling. We are, here inside our bubble, just gliding now through this time of quarantine and lockdown.
He’s adjusted to the lack of daily treats from the shop that used to be waiting for him as he returned home from school in the taxi. He’s adjusted to the need to avoid certain rooms if parental work zoom calls are happening. He has absorbed the unabsorbable – that ‘out there’ is a virus that we are trying to avoid. He knows we wash hands. He accepts that when a package arrives one of us takes it outside and removes the packaging and that we must wash hands again.
We believe we had an early introduction to COVID-19 in our home – but we will never really know. My last post was fairly grim on that point. Apologies. It was a strange, strange time. We learned later that a family in our local FASD support group (whom we had seen days before our eldest became symptomatic) came down much harder with it than we did in our house. Worries were running high. (Thankfully, they made it through, though it was scary.)
Our son with FASD was shielded from those worries. We didn’t tell him that’s what we thought his older brother and I had…that maybe that was what explained his back pain or his dad’s unusual symptoms. He is still shielded as much as possible from the extent and horror of this thing. We turn off the news when he comes into the room. We don’t discuss this novel coronavirus when he’s around. He’s too prone to anxiety, so we do not fuel it. We just keep chugging on.
In our house, these post-illness weeks have been gentle. My husband and I are both working remotely. Our salaries are secure. We are lucky. Very lucky. Our eldest is able to do his computer/gaming coursework at home and his university position is all set. Our youngest’s specialist school understands that in these unusual circumstances it would be impossible to try to teach the curriculum, they do not expect us to. We speak once a week with his form tutor, giving her updates on what his own imagination and curiousity is leading him toward.
He has been spending a great deal of time with his screens. As we have explained elsewhere, we are ok with that. He has been learning/absorbing the ‘rules’ of the online world for more than a decade. We monitor what he’s looking at. We talk with him about the YouTube videos he is watching. For him and for us, the internet has made this time bearable.
When he became obsessed with a potential invasion of Asian hornets, I suppressed my own severe dislike of bugs and showed interest in how they reproduce and what their nasty stingers look like. When he researched some new toy washing machines, we invested in another for his growing collection. He coped when the first we purchased was broken and had to be sent back (previously that would have been a guaranteed meltdown). It’s fascinating. He is bringing new, more grown up understanding to this fixation. He showed me how this new machine came with colourful plastic beads that can placed in it while it tumbles. He said, “Isn’t it satisfying to watch?” I felt years of my own curiousity at why this was so important to him come into better focus. This is sensory too – it’s not ‘just’ perseveration. This is helping him. I am so glad we didn’t tell him he couldn’t have another. He uses things that are meant for younger kids in a different way. It’s not accurate to say he is playing at a level half his age. Because while this toy isn’t marketed to a 15-year old, this use is something more, something else. It’s like when he shows me ASMR videos he has found. He is learning what things help him self-regulate.
He is the expert on himself. He is – as he has always done – showing us the way.
He has been perfecting his video-making skills and I have to admit, I don’t even know how he does it. Some have been really very clever – they involve him super-imposing his own image over other short videos – it’s all very slapstick and truly funny. And yes, it has involved endless litres of water being thrown over his head in the garden to get the right shots. And yes, we have left him to it. Far longer than we would have done years ago. Even when it was cold. Even when he had every plastic or metal bowl we own outside. Even when we had to do several loads of wet laundry each day. Even when he was out there shrieking and making silly noises that must have made the neighbours wonder.
We have just backed off and he’s better for it. His creativity has been thriving as a result. He has taught himself several new apps and computer programmes to do this. An ICT or drama class couldn’t have yielded have as much creativity.
He’s implementing self-regulation strategies. He has set up an old bed tent over a chair in the living room and created a quiet space in among us that he goes to when he needs to or wants to. The Easter Bunny had brought a pop up tent for the garden that was a great hit at first. He spent several days out there, until the bugs also found the hideout. We are hoping once the weather gets warmer that will be brought back out. He has a new water toy that is like a marble run for water. A massive jug of clear glue for slime-making.
He’s been creating electronic music and using a wide range of apps for this. He is helping on a project to create a song about FASD and had a remote ‘meeting’ about the project. He’s had a new “Moving and Grooving” dance DVD. A wireless microphone that links into an amp. A couple of CDs of his favourite K-pop band, Blackpink. A music class couldn’t begin to accomplish as much learning and hands on experience.
We have invested a little to keep him occupied in these days, and he has also spent some of his savings. His purchase suggestions have been perhaps unusual, but they have all been thought-out, researched and considered at length before he has asked for them. That makes me proud and hopeful.
Overall, he’s been low maintenance. We have had only one day with a flying iPad (related to unstable wifi) and that was quickly de-escalated. Years ago, the entire room would have been destroyed.
It’s quite possible we are being too hands-off. Others might see our days and think we are not doing enough. But I have always believed, “If it’s not broken, don’t fix it.” Especially not during a pandemic.
There is a t-shirt I’ve seen advertised. It says, “I was social distancing before it was cool.” That sums things up pretty well for our son. If I’m honest, for me too…
Knock on wood, here’s hoping things continue to stay calm. Rather than being frustrated about not being able to be ‘out there’, I am loving this feeling of security and safety in our home. I don’t think that is necessarily a good thing. But I am in no rush to go out into the world right now.
I am very, very aware that if this had happened a few years ago, when our son’s needs were not as understood, when we were still parenting in a more traditional way and when our son was trying and not coping in a mainstream environment – if this had happened then (and if he was being told to do school assignments), we’d be in crisis. Too many families with young people with FASD are in crisis right now. I know how very hard it must be. We also are lucky we have two of us parenting here. I know how worrying these days are for single parents who have to face all those ‘what ifs’, parents who are not getting a break at all.
There also is that ever-growing hard, harsh, devastating reality of so many people dying. Loved ones taken too quickly and so painfully. I am thankful every day that, so far, our family and small network of friends have been spared. My heart aches watching the news, knowing every one of those numbers is a person who will be missed. For those reading who may have lost people dear to you, please know we send you our deepest condolences. And for families affected by FASD who have to deal with loss and illness while coping with so much else, you have our respect and solidarity, for whatever that is worth at an impossible time.
So, yes. We have been lucky on so many levels during this corona spring. I have not really known what to write about here because I feel a little guilty. Maybe even more than a little guilty. But the reality is, for us – now that the time of illness in our home (whatever it was) has past – we are ok. Well and truly okay. In fact, these days have become peace-filled. I appreciate it can change at any time. But for now, for now I am thankful for the calm.
Stay safe out there everybody. Be well.
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P.S. Many with FASD will need a schedule each day and set activities. NOFAS-UK has prepared a ‘Stay at Home Guide for Kids with FASD” that might be helpful.
FASD: Learning with Hope 