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!”