I see it sometimes – the future. A way he might flick his head. A look. Some unexpected insight. The way he sometimes asks if I am okay. My last blog post was about fear. This one is about hope. Yes, even as he officially enters teendom as a young person with FASD, I dare to focus this post on hope. In fact, I insist on focusing on hope. It’s right there in the title of this blog. It is at the core of everything we do as a family. We hope. We learn.
As our not-so-little-one becomes a teen, I am celebrating all that he is and will be.
You are shaking your head. Yes, you can remind me of this when we hit the bumpy times we know are coming. You may think I am naïve. I get that.
But whatever you might think of this bright-eyed jump into the teenage wasteland, please know, I am not naïve. I am making a choice. And I am making that choice publicly because I believe we need to change the image we all have of teens with FASD. We have to change the narrative. Reframe the language.
The statistics are cruel for those with FASD. This is not the place to repeat them. I am celebrating a rite of passage. In fact, today, I defy those statistics. Today, I celebrate a young determined soul who I believe can find his way forward, with our help and patience and perseverance.
I know he can. Here is why I know that.
- He is identifying his feelings – using GIFS and Tom and Jerry cartoons, he is showing me what he sometimes feels like when rage boils over, when the forbidden words pour out, when he can’t contain the big emotions or when he makes choices he later understands were not the best. If he can find various ways to identify and communicate those intense emotions and begin to analyse them, we can find a way to implement strategies to help.
- He is using phrases like “My brain is saying I am not ready for that.” “My stomach doesn’t want that now.” “My body isn’t ready for that.” He is learning to understand and read his internal signals. We work with him on this all the time so that eventually he can become more analytical and learn to focus his mind on ways to help redirect his feelings and urges.
- The word “dysregulated” has become part of his vocabulary. He understands there are times when his brain becomes overwhelmed, the importance of finding calm in those moments. He is devising his own strategies, and he knows that we will help him. This is not to say meltdowns don’t happen, but this growing awareness is the foundation for moving forward to a time when he will be better able to self-regulate. He is beginning to learn the lingo he will need for the rest of his life. We do not keep FASD in a box around here. We embrace it and discuss it and accept what it means when those neural connections that don’t work in the same way as others might.
- His school anxieties have dramatically decreased following the move from mainstream to a specialist school. This is an epic shift. This school year started with some of the most distressing and challenging times we have had as a family. He was anxious. We worried he was becoming defeated. Following his switch to a special school in November, the year ended a few days ago with an entirely different reality. The change happened quickly, efficiently. I know that all too many are denied this sort of a quick response and that the changes in setting do not always solve all the problems – but his experience shows that if we get it right, even very drastic behaviours and problems can change fairly quickly. There is hope.
- He feels secure in his place in our world. Even as he sometimes wants to run on impulse – “escape” as he calls it – our newly-minted teen knows that we love him unconditionally and this really is his forever family. He knows this and come what may – remember, I am not naïve, I know there are rough days coming – he will always have our love. That knowledge hopefully will help guide him through whatever storms may be ahead.
- He finds joy. In our son’s case, he immerses himself in music. He is good at it. It consumes his thoughts and it links in with movement and muscles and his inner beat. He dances and sings and performs. His very being glows while he is doing it. Every teen, every child has some one thing that they enjoy and are good at. For our guy, this is his gift. We structure so much of his life around this and together we can find a space to simply celebrate his achievements. May he always find joy, I believe that is tied closely with self-esteem. And it is self-esteem that will see him through to those (in my mind) magical mid-twenties when (we hear) things start to even out for many with FASD as their emotions and social understandings begin to catch up to their actual age. Sitting on a bean bag chair with him, I started to wonder if my rosy picture of life is justified. As a quick test, I just asked him to choose how he sees himself:
Happy or sad – “happy”
Strong or weak – “strong”
Kind or unkind – “kind”
Good or bad – “good”
Loving or mean – “loving, of course”
Gentle or rough – “gentle”
In these answers, which go to the heart of his self-perception, lies his future. If you have read this blog, you know our home is not always peaceful and sweet – the fact that even with those times that can be measured on the Richter Scale, our son still understands that he is good and wonderful – he can separate out his brain challenges from the core of who he is. As one friend, Savanna Pietrantonio (an adult with FASD who co-adminsters the Flying With Broken Wings Facebook group and the Hamilton, CA FASD support group) said recently, this is key.
I know, I really do know that these teenage years can rip into a person’s psyche and tear apart their faith in the future. I know, really know that good parents, carers, guardians and others trying to support those with FASD sometimes face walls and hurdles that make navigating these years impossibly hard.
The issues compound in ways we are only just beginning to experience here. I get it that the mix of hormones, accelerating tensions/anxieties, the growing social mismatch with peers, the desires for freedom and experimentation, the challenges of not being able to identify risk and manipulation (especially in this digital world), the coming encounters with a justice system that doesn’t understand FASD, the escalations (and perhaps danger) that can occur once strength and muscle can back up those meltdowns that at times simply have to run their course, the offense that can be caused by impulse, lack of self-editing (aided by increasingly distressing language), the scary realities that can intertwine when sex, drugs, and alcohol are teamed up with a complete lack of cause/effect reasoning. I know, I know, I know. Self-harm, suicide, crime, depression, psychiatric conditions, homelessness, early and unplanned parenthood… I know these are very real risks and life can become impossibly hard. I have read the statistics. I am in regular contact with people who were themselves contributors to those statistics. I have open eyes.
And by insisting on hope, I am not judging. Just as I don’t want to be judged, I don’t judge other families. Every situation is different, unique, and has its own challenges. One thing is sadly for sure – nearly every individual with FASD and their families have at some point been disappointed or let down by The System. There are reasons – too often structural reasons – why so many find these teenage years difficult and demoralising, why even some of those whose families have absorbed all the strategies still wrestle with these years. The delays. The times when diagnosis was denied or when calls for help and were turned away. When a young, vulnerable person was not deemed to be deserving of support and floundered as a result. There are reasons. None of it is due to a young person or a family who deliberately gave up, no one wanted or desired those sometimes tragic outcomes.
I hear it. I see it. I get it. And yet…
I also see the incredible resilience of those who nevertheless find their way forward through the ‘fog’ (as R.J. Formanek, an adult with FASD sometimes calls it – check out the amazing Facebook Group he co-adminsters – Flying with Broken Wings – for insights).
Until we can look at these teenage years with hope, until we can see the strategies to get us through, until we can join hands with our struggling young people with FASD and show them that they are not alone in their struggles and that there is a way forward, those statistics won’t change. It’s one of the reasons why I am so inspired by the new National FASD Advisory Committee here in the UK, comprised of adults with FASD who are going to be advising NOFAS-UK on a project focused on Transitions to Adulthood.
We have to match teen’s talents with their potential. We have to build education and programmes that help them bridge these years into adulthood – even if their walk across that bridge takes longer than for others. We have to show them role models and hook them up with people who don’t only see their “problems” but who also see their magnificence. We have to teach strategies for self-regulation and give them (and all those around them) increased literacy of their condition. We have to wrap them in belief that they can do this, they will do this, that we have their backs.
Our little one is now a teenager. And I am so excited to be by his side, watching as he unfolds his future. Our family is united and learning (his 13th birthday presents included a giant bean bag chair, a homemade body sock, and other sensory supports all of which he was excited to receive). Together we are getting better at navigating and minimizing those truly rough moments. I won’t say life is easy, in fact it can be extremely hard sometimes.
But without doubt (and our teen knows it), I am proud of his every day and I am so looking forward to watching him rock this world. I will be the one, front row, cheering him on. Because he is Super.