Transitions and the D-word

Blog Transitions


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?

Yes! Follow THEIR Dreams, Not Yours



Children with disabilities too often hear ‘no’.  This was true for our little one who has a neurodisability as the result of prenatal exposure to alcohol – a Foetal Alcohol Spectrum Disorder (FASD).  Before we understood that his brain was simply not wired to respond quickly or intuitively to a world he found deeply overwhelming, we kept ‘correcting’ him.  Every day he heard in a thousand different ways that his instincts and his responses were somehow wrong. That was our fault, not his.  We moved too fast for his brain to process it all.  Unknowingly, we threw him in over his head time and time and time again. We were too slow to hear what he was telling us, too slow to react to his needs.  His behaviour may have been the focus, but we were the ones who needed to change. He was finally diagnosed with FASD at the age of 10, but even after the diagnosis it took time for us to adapt to the implications of his brain damage.

Things started to improve when we started to listen to him, really listen.  We realized that while he cannot always phrase it well, he has insights into his condition that can help us to help him.  It became a positive loop – the more we listened, the more we understood.  It took some detective work and some professional input, but the more insight we had, the more his anxiety decreased.  The more relaxed he was, the better he could express himself.  Being more able to understand his perspectives allowed us to agree or at least discuss strategies.  Slowly, with this new shared understanding, we all started to come up for air.

One key element was seeing the world from his perspective – understanding the impact of the negatives we were showering over him with our (we thought) gentle ‘helpful’ reminders.  We dropped the ‘no-s’ and ‘don’ts’, and we started to say yes more often.

Accepting he would always need support, we set out quite deliberately to build a network around him, and began to prioritise settings where he was better understood (including moving to a specialist school).  We also came to appreciate that as hard as it was for us to wrap our heads around the diagnosis, it was harder for extended family, friends, teachers, and people in the wider community.  So, we opened up about our lives, his struggles.  We very carefully and consciously helped educate those around him about FASD.  We tried to face it all with positivity.

Life-changing stuff, that turned out to be in ways big and small (even if it is still a work in progress, as readers of this blog will know).  It included me giving up a career of nearly 30-years to work on raising FASD awareness full-time.

But this wasn’t one-directional.  Our son also has stepped up and has led us to a whole new understanding of what he can do with the right kind of support.

I’ll give you a rather extreme example.

Our son doesn’t see or experience the world the same way we do.  But that doesn’t mean he doesn’t have his own dreams.  All kids do.  Our guy has in his head a definite picture of where he wants to go, what he wants to accomplish.  Specifically, our son wants to play Wembley.  Or the O2.  Preferably with Little Mix.  You probably just smiled.  But please know, he is dead serious about this.

All those years he spent watching Hannah Montana, perfecting the songs and dances.  The hundred times he watched the DVD about how Justin Bieber became a star.  The disappointment when his YouTube channel didn’t get a million views once we set it up, and the belief it still will someday.  Each and every night spent in his room blasting Little Mix, rocking and memorizing and absorbing the music into his very soul.  Engaging his muscle memory, using music to perseverate on something, to focus his mind, to help him relax, to help his body know when and how to keep it all together.  Countless ‘concerts’ in his room with stuffed toy ‘fans’ and toy stage lights aimed just so.  The years of shopping in charity shops for costumes.  Researching stage lights.  Contemplating how curtains rise and fall.  The years of music and singing lessons.  Ongoing involvement in local supportive theatre groups.

Our guy has been preparing mentally for his Tour for a long, long time.  And in his mind, this was and is very, very real.  A dream this big could be heartbreaking. Some might say we should ‘nip it in the bud’ to avoid profound disappointment.  And yet…

There was and is no way on this earth that I am going to tell this child that he will not make it to Wembley.  Because, really, I don’t know that.  He just might.  And he sure isn’t likely to get there if we don’t believe he can.

Over the past several months his conversations about his Tour became increasingly insistent.  He wanted so desperately to perform, but couldn’t quite figure out how to make it happen.  He was becoming frustrated.

So, we thought outside of every box, and decided to give muscle to his dream.  We rallied all those people around him who could help and we simply said yes.

Yes.  We will help you bring your rainbow-coloured Flashing Lights Tour to life.  Yes, people will come to see just you perform.  Yes, seriously!  You can do it.  We told him his grandmother rented a school theatre.  Oh, if you could have seen the light that sparked in his eyes.  He went to work.  He orchestrated it all.  He designed the stage.  He planned, practiced and rehearsed his ten-song set list at school and with his voice teacher.  We designed posters and Tour merchandise.  Thanks to his auntie, he had five costume changes all lined up.  Another auntie agreed to be MC, fully prepared to support him in whatever way he needed that night.  A teacher arranged things in the sound and light booth – not blinking when he said he wanted it to look like the Ariana Grande stage, showing how we could improvise.  About 50 people agreed to attend.

When the night finally arrived, we weren’t sure how things would go.  During the sound check he closed into himself.  He looked frighteningly small and alone on the big stage.  With a thud in my stomach, I started questioning this whole idea.  But in one of the most eye-opening moments of the whole experience, we literally saw him stand taller, more confidently when two of his young friends arrived early and started to cheer him on in practice.  Singing for them, he expanded again.  I knew then that the night would be golden.

It started with the ‘Meet and Greet’ – adoring fans clamouring outside his ‘Tour Bus’ (a superb addition provided by a friend).  His ‘security guard’ then hustled him into the theatre.  Curtains opened and for about 45 minutes our little one filled not just the stage but the whole theatre with his presence.  The audience were armed with tour tags on lanyards, LED lights, glow-sticks, colourful scarves to wave.  Song by song he grew stronger, more confident until the almost impossibly perfect moment during the encore when he became complete amid confetti canons and massive balloons bouncing across the stage and around the adoring and cheering audience.  This was the grand finale he has so often dreamed about!  He floated through the After Show party and during his ride home on the Tour Bus.

For this one night we removed all the roadblocks, and we said one big, huge, concerted “Yes!”  We stepped so far out of the mold it was a bit scary for us all.  It was a risk he was willing to take, so we took it.  We showed him that his dreams can come true, that we hear him, that we will cheer for him in the way he choses to present himself to the world.  Rather than encourage him to fit in to a model that was never created for him, rather than encouraging him to keep his head down so as not to attract attention due to his vulnerability, we said yes.  Maybe it was counter-intuitive … but we did exactly the opposite of what would be ‘safe’ for him as a child with a disability.  We followed his lead and put him up front, under the spotlights, right there on centre stage, precisely where he wanted to be.  Where he deserved to be.

And the unexpected happened.  All the glitz and attention calmed him.  A family member summed it up, “He was totally fulfilled, therefore he was totally at peace with himself. He would have done that performance to ten or 10,000. It was his place, his dream and his achievement.”  (He later said to me, “Mummy, I wouldn’t be nervous, I could sing to 30,000 people.”)  A friend observed, “The people, the songs, the atmosphere – he breathed in (his form of yoga) and found himself calm and in control after the performance.”  It never dawned on me that this was a type of self-regulation.

In creating space for him to give of himself so fully, we all became that much more complete ourselves.  “His zest for life is infectious!” one friend said. “Who else can get a room of adults and awkward teenagers dancing and waving scarves?! We all left with aching mouths from smiling and feeling very proud.”

Another friend quoted Audrey Lourde, “It’s not our differences that divide us, it is our inability to recognise, accept and celebrate those differences.”  For that night, we were united in our son’s world, and boy did we celebrate those differences.  And it was a blast.

The whole evening was full of sparkle and colour.  His effervescent spirit held us all up just that much higher.  We were all there with him, for him, because of him.  This was his 13th birthday celebration – his chosen way to joyfully enter teendom.

I know not every child can get on stage and belt out ten songs in front of a crowd while dancing in glittery costumes.  But every child has some one thing.  Whatever that one thing may be deserves oxygen and sunlight so it can grow.  If we listen closely enough, and help our kids follow their dreams (not ours), we are planting the surety in their souls that they are heard, they do matter, and this world sparkles and shines more brightly because they are here.  Maybe to you my family sounds bonkers.  Yes, we did this Big.  Large.  It was most certainly over the top.  That was a conscious choice.  We chose this, rather than a holiday.  It may be unusual to spend an evening simulating a pop concert instead of going away – but this was oh so much better than scurrying off in a car where he’d meltdown to some place where he would be overwhelmed and lost just because that is what people do for holidays.

The memory of this night will last forever.  Hopefully it will always be with him, deep inside, on those dark nights when self-doubt starts to gnaw away.  Hopefully this experience will serve as some kind of insulation against the relentless onslaught on his self-esteem that we fear the teenage and young adult years will involve.

Come what may, for this one glorious night our little one was up there, giving his all to a room full of people who were quite happy to hear HIS voice.  We weren’t telling him what to do, he was showing us what he can do.  For this night, he was surrounded by the thunderous applause of one huge and resounding “Yes!”  For this night, he shone forth in all his magnificence.  We could see – literally see – the network we created cheering him on.  The thought of that still brings me to tears, even if I was too busy at the time jumping and dancing in the front row to understand then the full impact of the Flashing Lights Tour.

We must have done something right.  The first words out of his mouth the next morning were “Mummy!  I had a dream about going on tour again!”








A Super Teen with FASD


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.

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.




When a School Rocks

SchoolRocksBy SB_FASD

They cheered each other as each new car arrived with another student.  They were wearing their production hoodies and shirts and school uniforms.  They were buzzing with positive energy – ready for their third performance of the day.  Not nervous, buoyed.  Several kids were introducing our son to their parents.  Some of his new friends broke into huge smiles when they saw us and one gave me a big hug.  The spirit was high.  I was expecting nerves, uncertainties.  But instead this place was alight with confidence and a sense of fun and accomplishment.  These kids were in a good place.  Soon they would be onstage, but in these early moments before the curtain was raised, they were already a team.

Our family has extensive experience with theatre.  The lead up to this night was every bit as intensive a schedule as for a semi-professional or major amateur theatre group.  Before they got to this place, hours of expert direction and guidance took place.  Even before they started rehearsals, these kids were being prepared for their moment.  And that is the thing that brings me to tears every time I think about, sappy soul that I am (or that I am becoming).  The whole school experience for these kids makes nights like this possible.

I don’t know all of their stories, I just know our son’s story.

Our son has always loved music, performing. He’s kind of awesome at it.  He’s now in Year 8.  He attended mainstream school until last November.  In his school’s end of year production in Year 6, he was given I think three words to say, and was placed behind a taller child where no one could see him.  In Year 7 at the secondary school, he eagerly attended the rehearsals for Oliver (he knows every word of the songs) but he had to drop out because the school was not set up to support him through the rehearsals and he was getting into trouble.  Only a few months after he was close to rock bottom having nearly been crushed by the pressures of his old mainstream school, here in this specialist environment, with this team of educators who understand his needs (he has a diagnosis of Foetal Alcohol Syndrome) and have the resources to support him, not only was he onstage but he was in a main role, with more lines than I thought he could manage, and singing his heart out.  And his teacher was literally #intheband!

And as I watched this theatre full of amazing students I was multiplying in my mind his story by her story by their stories, and the full impact of what was happening left me humbled.


There they were, these brave, hard working kids, singing their truth:

I’ve got so much to say,
If only you would listen.
I’ve tried ev’ry which way,
And still you never listen.
Can’t you see I’m hurting?
I couldn’t be more clear.
But I promise,
One day I’ll make you hear.

You know I try, try, try to explain–
I’m not the kid you want me to be.
And yet it’s all, it’s all in vain–
You just don’t want to see the real me.
You think you know what I’m all about–
And yet you just keep shutting me out!

I’ve got so much to share,
If only you would listen.
You could prove that you care,
If only you would listen.
I’m not gonna beg you–
You’ll never see a tear.
But I promise, one day, I’ll make you hear.
(Lyrics, from If Only You Would Listen)

We had a young friend with us, a child who attends our son’s old school.  She said she wished could go to this school too.  She didn’t see anything other than a cool school, with students who were having a great experience.

We were told by the head teacher that while any school should be happy to have a student like our son, this place is perfect for him because he is so very comfortable being who he is.  I wrote about this in the last post, but I just can’t say enough how life-changing it is as a parent to know that your child is in a place that welcomes him, appreciates him, and wants him to be there.

Those words hold power.

They hold the power to change trajectories, to forge positive futures.

I am not saying this performance was smooth throughout.  There were microphones that didn’t work, lines that took prompting.  But what I loved most of all was imagining our son one day being like the lead actor – a talented young man who captivated us all last night – helping another young student like our son remember his lines some day.

More than the cheering each other upon arrival (which was truly awesome), I was deeply, deeply impressed by the way these students guided each other.

That is what this school is teaching.

And there they were!  Some kids for whom even standing up in front of a room full of 120+ people would be a potentially crippling thought…some students who in other places would be mocked or sidelined or silenced – shoved to the back of the room, put into a side room or perhaps even excluded at times…some young adults who have overcome more than most of us will ever have to face…there they were.  Shining.

During the curtain call, when the cast and crew were all onstage dancing and laughing and giving themselves high fives, we saw our son for the first time with his tribe.  These kids weren’t patronizing him, these kids weren’t including him because they were told to, these kids were standing by him, with him.  Together, they made us hear.

AND, they had a confetti cannon.  You have no idea how much it means to our son to be on a stage with a confetti cannon, hearing the applause.

This school rocks.

(Now, how do we make it so every school can rock too?)

Expectations Versus Hope

In which we are reminded the only way to get through a hard time is to keep on going...By FASD_Mum
(With a special guest response below from educator/advocate R.J. Formanek, an adult with FASD who reminds us here at FASD: Learning with Hope, of the importance of hope )

We sat there in the hospital in a confusing, brightly lit room, with several huge screens mounted on the walls.  The biggest one was blasting the news.  Subtitles scrolled across the screen.  A loudspeaker intermittently called out instructions, perhaps about incoming ambulances.  It was hard to hear.  There were all kinds of mini-dramas happening, heart-wrenching and confusing to watch.  An old blind man headed for a window he thought was a door.  He was hoping to sneak a cigarette, my husband discovered when he offered help. An old woman in a wheelchair was left all alone for hours, nodding off and then waking with a dazed look.  A grandfather who was still joking despite had a stroke, surrounded by several grandchildren.

My own head was ready to explode.  Because of the pressure, I was not hearing properly.  I could only half understand what was being said.  If I wasn’t looking at someone I couldn’t really tell if they were talking to me.  The nurses and doctors kept wanting me to go with them alone, without my husband, but I felt clingy.  I wanted him with me.  I was only catching part of what was being said.  I wasn’t sure I understood everything they were saying.  I could not focus.  I was confused and embarrassed by that.  All of the sounds coming from all of these different places were pounding down on me.  Echoing.  Reverberating.  I just wanted to be somewhere quiet.  The flashing images out of synch with the sounds were almost nauseating and deepened my feeling of distress.  I was disoriented and scared a little. (Who wouldn’t be while waiting for a stroke nurse even if you KNEW it wasn’t a stroke – and it wasn’t?)  I was overwhelmed.  This is not a familiar feeling for me.  I am usually in control. I felt impatient, snappy.

I turned to my husband and I said, appalled, “I think now I understand a little more what it is like for our son.”

It was a humbling moment.  What if?  What if this is what it is like for our child with FASD every time we go to the mall, every time he enters a busy school hallway, every time we have a family celebration in a small space?  What if he feels this distressed all the time, while I blithely try to push him through it?  All good questions.

But how does this relate to the Room Swap Ordeal of my last post, you may be asking?

I had promised an update.  I was preparing a sweet post about how much our little one LOVES his new room.  How he loves his new bed on the floor with the rainbow duvet. How his first action was to spend an hour organizing his pens and markers and paper for his new desk.  How he has been reading more, doing 10-minute workbook times tables exercises. How he asked to watch a music concert DVD on the laptop from his new little fully cushioned hidey-hole/calm space and sat there contentedly rocking in that space we hoped he would use for just this purpose.  How he showed me with pride that he MADE HIS BED the next morning without prompting –  the first time ever.  There was much that was so good about the first night.  I wanted to capture that because I suspected the glow would not last very long.

Unfortunately, that was truer than I realized.

Moments after we celebrated the Big Bed Making Win on the first morning after the move, the phone rang.  A furniture delivery was imminent. We had been given an 8.00 am – 12.00 window, so guess what time they were coming? OF COURSE they were arriving at 8.00 am before we could tuck our son safely at school at 8.15.  OF COURSE they were coming before we could have help moving two mattresses.  OF COURSE I should not have been moving anything as heavy as a mattress.  (You can see where this is going…)

Right after moving the mattresses, I knew something wasn’t right with me physically.  I had a sense of fullness in half of my head, and my hearing in that ear was off. Having had a scare recently, it was not something I particularly wanted to think about at all. I pushed on. (And, to my dear husband who somehow thinks this is his fault, for the record it was on me, not you.  I chose to do what I did.  I didn’t think anything was THAT wrong or I would have stopped.)

As the superhuman delivery guys were quickly bringing humungous boxes up our stairs, our little guy was literally pinging off the walls in his new room, having discovered that with the mattress we had now added to his futon on the floor, he could actually do both front and back flips on his (previously made) bed.

Once the delivery guys left, getting him to school was Not Easy.  Screaming, spitting, wailing, complaining of tummy aches, we got him there.

Now the clock was ticking.  We had a heck of a day ahead of us.  This furniture is Big Kids’ Stuff, thankfully not flat-packed for the first time in our lives, but it still needed to be carefully unpackaged with help from family members.

It’s a fair question to ask why we took all of this on at one time.  Our son got a bigger room as we swapped his room with our office.  But there was another reason for this upheaval, and it’s not unrelated to a blog about FASD.  My husband and I need our own zone of calm.  Somewhere along the years, our bedroom had become a dumping ground for those things that don’t fit anywhere else, for handed-down hand-me-downs, for half a US mattress set that no longer had a box-spring and which attacked our backs as a result.  The room was an afterthought.  It kind of mirrored our relationship, which has taken a battering over recent years. It’s made of strong stuff or it would have fallen apart sooner.  We took a bold step in March, for our anniversary, and decided we had to invest in us.  A trip was out of the question, however much we need a getaway.  We decided to make our room nice, so that we have a place to go, where we can close the door and regain our peace – as a weary couple and as extremely tired individuals.  Our days are fraught with tension.  We take too many shortcuts with each other.  We desperately need to be able to close the door sometimes and just relax.  We are supremely aware that pressures of raising a special needs child on top of otherwise busy lives can drive couples apart.

So, we took a bold step and ordered furniture on monthly installments and there it was, in our room, unpacked finally with the help of family, but still unusable in the short-term.  It needed to be waxed 24 hours after unpacking.  The hallway and our new office was overflowing with green bin bags full of clothes. Our eldest son’s room was left also only partially reorganized.  Pictures were leaning in precarious places. My mom’s not-very-well boxed set of china that survived all those years intact (not one broken or chipped piece, she used to brag) is in our living room, apparently irresistible as a seat (while I try not to hyperventilate).

Over the next days a charity came to take away old furniture, including a wardrobe that precariously housed toys downstairs (and caused an avalanche every time someone tried to get one out).  Our (we now discover wrong) thought was to move many of the toys up to our son’s new room so we can have another workspace downstairs, freeing up our unusable dining table from being covered with laptops.  The wardrobe is gone, and the dining table is still now covered with those excess toys with too many parts that even we know would be a disaster to move up to his room.  After our son threatened to squirt us with the now-reachable paints that had been on top of the wardrobe, we have at least moved those to an undisclosed location.  We aren’t, after all, entirely oblivious and having a full squirty bottle of red paint pointed one’s way is a fairly effective reminder.  (Thank goodness the cap was on tight.)

Meanwhile, on each of those first two nights I couldn’t hear out of my left ear. So, in the midst of all of this moving madness – china in the living room, toys in the dining room, clothes in bin bags in the hallway and the office unreachable, master bedroom in chaos – I then needed to go to the GP, talk to doctors and spent hours late one afternoon being seen in the local A&E, where they decided the stroke nurse needed to check me out (it was NOT a stroke).  Stress levels throughout our world escalated phenomenally, dovetailing nicely with the increasing but intermittent feelings of vertigo I have also been experiencing.

So.  Here we are.  Six days post-dining room lake episode, living in worse upheaval than we started with.  The road to hell, as they say, is paved with good intentions.

And yes, we have created a little mini-hell not only for us, but most detrimentally for our struggling son.

Our son’s schedule has been disrupted because of my mystery illness.  Even when heroic friends stepped up on short notice to look after him while I was at the hospital, it affected him. His sleep schedule is totally up-ended – he has been waking up in the night and playing with the toys now too easily available to him.  He has been obsessing about recreating school plays behind the new curtains in his room, fixating on the lighting, the best angles for recording his productions.

His new very bouncy bed in the corner on the floor has become a kind of Valhalla. This is now his hallowed ground.  He is in his flying, flipping, tumbling glory on this mattress.  We hear it at odd times.  It has unwittingly become a space of constant battle, a battle we lose.  To avoid engaging in the battle, we have been known to leave him be.  (To be fair, it’s probably safe enough, at least while the inner-springs on the hand-me-down cheap mattress last.  And we have after all paid quite a lot of money over the years to develop these gymnastic skills.)

As if all this was not enough, he has been having Year 7 exams all week at his secondary school and today, today is the Summertime Ball – a several hour musical extravaganza at Wembley Stadium.  Following his successful concert attendance a couple months ago, in lieu of a birthday party in late July, we planned to bring him and a friend to this event.  But I cannot go given my health, and there is no one able to step in.  My husband now is facing a day alone with two kids in one of the most overcharged environments possible. These tickets aren’t cheap, and another kid’s hopes are resting on this.  We cannot just cancel.

Not unsurprisingly at a time of great stress, our son has ramped up and we are not as resilient as we must be.  (I have learned it is hard to parent with neurobehavioral panache when you feel like you are standing on a boat that is about to tip over.)  He is not eating well.  He is becoming increasingly antagonist.  He sees our stress and mirrors that back to us in the most unflattering ways.

Last night he started a chant of “cry baby, cry baby” that went on for longer than I thought it could.  It was aimed at my husband, who had finally broken down in a sort of PTSD reaction.  (Yes, fellas, we know you feel these strains too. It’s important for our kids that you own up to it, show them it’s okay to show emotion.) Our son soon realized that while this phrase was far from the rudest he used, this one hit a mark and he kept chanting it.  At first it seemed directed toward my husband and later toward my room-rocking distress. Probably, more accurately, he was perseverating but in any event it was not pleasant.  I kept my cool, very quietly reinforcing we must use polite words, asking in my most neutral voice where he heard that phrase.  When I learned it was from “Alexander and the Terrible, Horrible, No Good, Very Bad Day,” I simultaneously was impressed that he was applying something with such accuracy from one of his books and then instantly began to doubt the wisdom of exposing our children to books at all.

This morning our son has been in full meltdown, after a week of continual stresses.  He doesn’t want to go to the concert.  “Do you know how many people will be there Mum? 80,000!”  “I’m tired!”  “It’s going to be noisy, and the earphones won’t block it all.” “It will be dark, past my bedtime!” “I won’t be able to see the stage.” His fears of the unknowns are outweighing the wonders of the treat we know is in store for him.  But he is not wrong, all these things will be challenging.

We finally got him out the door for a pre-concert meet up with one of his friends (having had to cancel his singing lesson for today as he was clearly not going to do that).

My head is pounding.

Life sometimes just forces you to sit down and take stock, even at the most inconvenient times.  That is frustrating beyond belief for someone who is used to getting things done.  Taking that proverbial stock now, I see evidence of a whole lot of good intentions all around me.

Thinking back now to my A&E realization, in the face of all that chaos, incoming stimuli, and confusion, all I wanted or needed was a cuddle and to be told I was going to be okay.

Don’t we all?  This is most of all what our son needs.  Over and over again.  It is so hard to remember because of the way his distress plays out, wrapped up in some truly unpleasant behaviors.

I do know it is going to be okay.  We will be okay.  This is all on us, not on our youngest son who is coping as best as he can.  Sure, we can (and do) kick ourselves, blame ourselves, feel sorry for ourselves.  But none of that helps.

As they say, the only way to go through a hard time is to go through it.

Soon.  Soon we will have rearranged, peaceful spaces in our house.

Please remind me of this vision six months from now when I finally find a place for those two rather large electric circuit kits that no longer have a wardrobe to hide in precariously.

And someone please, for the love of all things, please lose again that recently unearthed Bop-It!

R.J. Formanek* responds:

It sounds like one hell of a week, if I may say so. It never seems to rain, but it pours, and this is a heck of an example.

Your description of the cognitive degeneration you were experiencing does sound very much like something many of us experience. Our brains are set up much like a ship, with a series of “water tight doors” that are designed to prevent damage during a flood or emergency. The brain tries to limit the damage by confining it to affected areas, while trying to protect that which is not affected by cutting off access to those parts of the ship not already affected. 

BUT… (here’s the real kicker!) each of those doors has in it a small window through which we can still “see” what we can no longer access… we know it’s there, but can not use what ever is down those corridors any more.
We are left with a description of how our brains are supposed to normally work… and that confounds the frustration to no end.
That builds on the anxiety and it becomes a vicious cycle… hence the reason the first thing a person needs is to feel SAFE.
What ever form that takes… safety first. 

You experienced that, and yes it is scary and lonely.

Only once that safety has been found can you stop the flow, and then slowly you can drain the flooded passageways and regain access to those corridors that are now blocked by the doors.
So, our brains have this built in safety circuit that can be armed to function at any time… and while it is built in to protect, as you see it can also be very damaging to the person’s sense of well being.

And yes, while this is going on invisibly we are still expected to be able to function on a day to day basis somewhat “normally”.
That would be because brain function and dysfunction are still so poorly understood by experts and the general public alike.
So, once again expectations of what should or should not be tend to colour our experience… on all sides.

I ask “Why would my brain tease me, and do this to me?”
They ask “Why would you do that?”
I guess there the answer would be the same:
“We just don’t know.”

I realize rather belatedly that this has rambled somewhat…
The brain is an AMAZING organ, full of mystery and secrets yet to be discovered… but it is just an organ after all.
I live with a certain type of dysfunction that is my own personal “normal” and if that were to suddenly change (let’s say for argument sake my brain damage were to suddenly be repaired, as to have never been there in the first place) I think I would PANIC to the max over that! I would not know my own brain anymore.
I fear I would lose a very important part of what makes me who I am, because it is IN that very diversity I find my own strength.
I would not know how to function… plain and simple.

So, in a kind of “backwards compatible” kind of way I can understand what it must have felt like to experience that.

And transitions? Transitions are expectations dressed up in their finest wares… but they are expectations nonetheless.

And expectations can kill.

They can kill dreams and hopes, fears and dreads…expectations can kill hope and joy… they are the culprits we have to deal with.
ALL of us. Every day is a series of expectations that either come true in positive or negative ways and outcomes.

Expectations are human nature.

And we all get burned.
Whether it is my expectations of myself and how much or how well I can do a certain thing, or society’s expectations of how I will do this or that… they are all expectations. Good or bad.

So, I try to change the expectations into HOPE alone… it is OK to hope for an outcome, while understanding it may not happen.
That is realistic… you can plan for bumps in the road.
But to rely on expectation alone is the loneliest thing in the world..
no one will ever fully live up to someone’s expectations.
By definition it’s not possible.

3 steps forward, 2 steps back is STILL a step forward, my friend.
In time the changes you have put in will become the new normal, but as you already know it takes time. You will all get there.

I am sending best wishes for your ongoing health concerns and hope with some stress reduction you can bring it all back to where you want to be. Take your time… get healthy. Hugs.  🙂

*R.J. Formanek is an educator and advocate.  He is a founder and moderator of FASD: Flying with Broken Wings, a fantastic Facebook group for people living with FASD, and those who work with or care for them.

An Epic Experience


By @FASD_Dad

It would be hard to think of something more likely to send our son into a meltdown than being in a huge, darkened hall with thousands of screaming people, flashing lights, and a wildly loud sound system blaring out music. That after an hour and half journey at the end of a long first week back at school, and a hastily scrambled McDonalds meal in a way overcrowded restaurant.

And when the event is a Little Mix concert that has excited and been keenly anticipated for months, the potential for overload and meltdown is even greater. There are so many ways this could go wrong, all of which would have devastating emotional consequences for ages afterwards.

But it didn’t. Instead, with some management, the evening was a huge success.

Our son is a HUGE Little Mix fan. He listens to them all the time. He searches out videos of the tours on Youtube and watches, rocking to himself in his curtained off safe space. He also loves to perform, and before Christmas won his school’s ‘Got Talent’ contest singing the Little Mix song ‘Salute’. He taught himself the dance moves, sung and danced and got the whole school cheering and chanting his name.

So, when he realised Little Mix were touring he started telling everyone he was going. Our first stress was that their London gig had sold out, and we didn’t know how to tell him. But then a second at Wembley arena was announced, and we pounced. So from late December until yesterday, the excitement mounted. And mounted and mounted.

All this week, he’s been telling everyone about the concert. As we left school yesterday he was shouting out to his friends over and over that he was going to see Little Mix. After agreeing on the right outfit – sparkly leggings, ‘rock star’ boots, a tight spandex shirt that holds him tight, a ‘zandana’ on his head plaited just so, we had to drive to the Tube, then a short ride to Wembley. We got quite wet as the rain poured down at Stanmore, and he started to say he wanted to go home. He refused to smile for a picture. I was worried things were going wrong.

At Wembley, McDonalds was a zoo. Too many small children crowded into too small a space. All totally excited. People fighting, almost literally, for seats as the rain continued to pour down. So, overwhelmed, with the tension building, he refuses to eat after a few Mozzarella dippers. He wants to get out. Now. He wants to run home. It’s too much.

Then his mood turns a little. There’s a Curry’s just off Wembley Way. He spends five minutes in the calm staring at washing machines, a regular obsession, and it works. Now he wants to go. It’s time to find Wembley Arena.

Out in the rain again, he’s not so sure. Where we’re going isn’t familiar. We can’t find it. We have to go home. It’s too wet. There’s too many people. Then, round a corner, we’re there. And they have fountains, with LED lights. These are mesmerising and help to restore calm. We find Door One, a side entrance which people with special needs can use. There’s a small, relatively tranquil seating area inside where we can wait until it’s time to go into the main hall. Out of the crowds and rain, with his new t-shirt in hand, he’s quickly chatting happily to three young Italian girls who don’t speak English! He’s excited and happy, they’re enchanted with his infectious enthusiasm.

Into the hall, we find our seats. He looks around suspiciously, but we have room to dance and can see the stage and screen well. He’s happy. He runs through his favourite songs, what he wants them to sing. He chats with our neighbours.

When the first act appears, a young, unsigned singer called Joey Devries, our son stands and screams and cheers – because that’s what you do at concerts! This despite the fact the hall is still two thirds empty. Devries sings well enough, and after 20 minutes of trying to get the hall going, he leaves. Our son is content. He liked the songs, it hadn’t been too loud, nor too stimulating, and there wasn’t too much noise from the crowd. Now he’s anticipating Nathan Sykes, who came, he tells me, from The Wanted.

Sykes, too, goes down well. Our son knows a couple of his songs and sings along. He bounces and gyrates, getting warmed up for Little Mix. He cheers and screams. Again, it’s not too much as it could have been. It’s just right. And, after 30 minutes, Nathan Sykes yells “Thank You Wembley” and the roadies start the preparations for Little Mix.

Now the hall is full. The noise is a little too much for our son. The buzz of anticipation a little overwhelming. But instead of freezing, or melting down, he asks for headphones to cut out the noise and sits, rocking in his chair, finding his centre. It’s a sign he’s growing up, and knows better how to help himself. Cameras start to show the crowd on the big screen, happy facing waving down at us. He hides under his seat so they can’t find him. He doesn’t want to be up there. And then after a twenty minute wait, the lights dim, the music starts to blare out, the screams reach a crescendo and the main attraction hit the stage.

At this point it could have gone horribly wrong. Our son looks around, at the stage, at the crowd on each side and behind us. He has his headphones on, but he’s not sure. If it’s all too much now, I dread what will come next. The tears, the flight, and the upset for days and weeks to come.

But it doesn’t happen. His eyes light up, and he starts to bounce up and down and sing the song that Little Mix begin with. And so it goes for the next two hours. He sings every word. He loves the videos with their bright, flashing images. He loves the lit up bunny ears many of the crowd are wearing. He loves the beat. He loves the base, although from time to time that gets a little intense. He hears his favourites and sees his stars dance to them. In his own concentrated, studied way he follows every moment. He can identify the confetti blasters at the bottom of the stage. He sees every detail on the screens. He knows exactly what costume with what detailing each Little Mixer was wearing for which song. He absorbs everything. He loves it. He’s on his chair jumping, he’s back on the floor dancing. He screams, he sings, and the event is a triumph.

As it’s done, we leave in the crowd and he can’t stop chattering away, recounting every little detail with a huge smile on his face. He loves Little Mix. He loves Wembley Arena. He loves the tube train. He sits in the car and rocks and sings the songs he has just heard performed. We get home at 11.30, hours after bedtime, and he doesn’t want to wake Mum so he tiptoes quietly to bed. He wakes in the morning and bursting with joy, a serene smile on his face, he tells Mum all about it.  He declares the whole experience was “epic!”

Music is a huge part of our son’s life. He lives for it in many ways. It is one of his biggest talents. It’s partly the way his alcohol affected brain works, the difficulty in communication between the two halves of the brain gives him a greater focus for music and rhythm. On a stage he really comes into himself.  He has presence. He loves also to listen and watch. This experience could have been just one step too far. I was worried almost until the end, but it worked and I am so happy it did. Relieved and happy. Now he knows what to expect, and can’t wait for the next event. His world has broadened a little and he has seen something spectacular. On the way home we talk about his singing and dancing. About the school talent contest and about how he can perform for people too as he gets older.