We love a child with #FASD-3

By @FASD_Mum

As a parent of a child with Fetal Alcohol Syndrome and ADHD, you spend a lot more time than you ever imagined possible thinking about how to help your child to focus.  It’s something most of us take for granted, but it is pivotal for a child’s prospects for learning.  And kids with FASDs can’t always focus due to the injury done to their brains.

In fact, you spend so much time thinking about it, that your own life can become blurry around the edges.  You find buried under a stack the addresses for those letters you meant to write two Christmases ago.  You see the corners of the rooms that have not been de-cobwebbed in way too long (Charlotte, are you there?).  You look across the room at your tired spouse, and wonder where the jukebox feeding, sometimes dancing days went.  The months fade into new months and you feel like time is seeping away from you without progress.  And that realizations scares the hell out of you.  Because while the edges of life are blurred, somehow the most important things come into sharp contrast.  Without a doubt, you become consumed with the critical importance of steering your kids through the pre-teen and teenage years.

Of course, I would say that now.  When they were toddlers, I said that was the most critical time.  And it was.  And when they were in primary school, that was most important.  And it was. But I am reminded of a good friend who has been a lifelong educator.  He once told me, after a difficult stint as an intercity middle school teacher, that people don’t spend enough time worrying about their kids during the teenage years.  He felt that was the most important time to be there for the kids.  And it is.  As a person who has always worked best toward deadlines, this phase, this seems All Important for both of our sons.  I am sure that is a natural feeling.  And it must be said I really enjoy this phase of parenting, it’s more interesting in many ways than the cuddle-feed-clean-sleep phase.  It’s more creative in some ways for a parent, and it is great fun to watch your children reinterpreting the world for themselves, on their terms.  You see seeds you planted years ago start to yield some fresh new perspectives.  But you also fear the gaps that you may have left – why didn’t you insist on piano lessons, or Japanese, or Taekwondo?

For our son with FAS, it feels like what we can accomplish in these coming years will either set him on solid ground or leave him mired in quicksand.  We will either give him tools and vocabulary to better understand how to help and explain himself and his needs, or we will not.  We will either give him the self-confidence and self-awareness he needs to learn the techniques and strategies to help him manage his condition, or we will not.  If he is going to beat the statistics, as I firmly believe he can, we need to focus.  He needs to focus.

And so lines I once held dear are blurred.  I swore I would never medicate my kids.  I had more than my fair share to say about the Ritalin Revolution.  I believed parents needed to buckle up and get on with parenting these kids better.  I believed it was unfair to the kids to mess with their brain chemistry.

And yet, here we are.

Our son needs to be able to focus.  If he can focus, he can fly.  Literally.  Today, we saw him in his first secondary school sports competition. This little four-foot-nothing kid who could barely see over the the top of the trampoline was soaring high, competing as well as any other kid.  It was 5 pm.  A child who normally loses focus by about 1.30 pm on a school day stood around for hours after school in a gym he’d never seen before, in a format he had never experienced before, and he competed as an equal.  Confident and accepted.  The coach had a buddy system in place for him. I watched with great appreciation as one of the older girls calmly and sweetly kept him by her side, redirecting him when he started to fiddle with something or another.

We sat by parents who were in different ways gently exploring our son’s differences.  I found myself telling one set of parents we have known throughout primary school that our son has been preparing for this moment ever since he was a toddler, practically bungee jumping off our bookshelves and throwing himself onto the couch.  Light-hearted, a bit of a joke.  Less light, I told them about his sensory need for proprioceptive input, and the “happy dances” he did as a toddler, holding our fingers and jumping up and down.  (Yes, I actually dropped the word ‘proprioceptive’ into casual conversation.)  I stopped myself from discussing his full diagnosis with them, wondering if I have missed a moment.  But the wider group of our son’s classmates don’t yet know the diagnosis, or maybe they do and I don’t know it.  But that gym wasn’t the place for that full conversation.

But on the other side of me was a parent from a different school, who recognized our son from a gymnastics club.  She surprised me.  It was the first time I had someone directly say to me, a stranger, that her daughter has special needs.  That opened up for me the next sentence I said, surprising myself, “Our son also has special needs too.”  She then said, “What is his diagnosis?”  Just like that, directly.  I found myself really appreciating the ability to just say it, thinking that maybe it helps people when you are more open about these things.  (Though I then became concerned that she had never heard of FAS, and she said she works with special needs kids.  Realizing yet again that there is a big gaping hole in the education people receive about this condition.)

On one of the FASD Facebook forums, I have recently been in touch with adults with FASD who believe their parents set them up for later addiction by putting them on stimulant medications.  Their stories chill my heart and fuel my concerns.  We have asked experts about this repeatedly.  The doctors insist the levels of drugs are too low to cause addiction and point out that there are many factors involved with addictions, many of which leave this population of kids particularly vulnerable.

We know these drugs aren’t great.  We have watched carefully and with concern what impact they have.  We have been alarmed by previous drugs and their side effects, so much so that we have asked for the drugs to be switched.  We believe some of his more aggressive and distressing behaviors have been because he was strung out from the old meds.  Recently, for he first time in years, we tried two weeks where he was off them altogether.  He was “more crazy, less angry” as our elder son described it. It was lovely to see our sweet son again, we knew he was in there.  It was great to see him eating with gusto again.  But it was heartbreaking to see him literally unable to sit still.  I described it as an engine running too fast (and only yesterday learned this is a term some experts are using in an innovative program for helping kids with FASD regulate, and a study shows it is even having a physical effect of creating more grey matter inside key parts of their brain. We know it’s important to get the line right between FASD and ADHD and if using medications to have the right ones.

This week we upped the new medication to two doses per day.  Our son’s school reported his best level of attention ever.  (The Special Educational Needs Coordinator didn’t realize he had the double dose one day, and told us he was like a different child.) They said it is the first time all year he has focused through to the end of the day.  The positive impact extends into the early evening, as we have seen today at the tournament and as we have seen in a more peaceful home since he started the two doses a day regime.

An adult with ADHD once said to me, “if you would not hesitate to get your son eye glasses to help his eyes focus, why would you not get him what he needs to help his brain focus?”

All I can say, is it is very obvious when the drugs work and when they don’t.  If they were not working, we would not dream of giving them to our son.  Our hope is that we can use the more clarified mental space they provide to give him tools to learn how to better manage his condition, in hopes that maybe someday he won’t need these medications.  But as a kid who is capable of soaring, it seems almost cruel to deny him that chance because we don’t fully understand the medications.  We have to trust somehow that these medical experts do know what they are talking about.

We have to focus too.  We have to focus on the best use of these increasingly limited pre-teen and teen days.  We know the hormonal storms are coming soon enough.  We know big challenges lie ahead.  We want our son to have all the tools he can to face that onslaught.  To do that we need him to be able to focus on his learning now.  We need to bend and stretch every neural connection we can.  We need him to be able to absorb what he can, when he can, while he can.

And we need to celebrate the days when he can literally fly. Days like today when he handed over to me the silver medal his team won, with a smile of pure pride, eyes sparkling.  Or like yesterday (another double dose day), when he came home glowing because he led (yes, led) a team of kids he doesn’t normally work with for an engineering/marble run project that won some award or other.  I cannot tell you how inherently satisfying and rewarding it felt to see him celebrated for these more grown up incarnations of his little kid obsessions.  As with jumping and bouncing, our son has spent years playing with various marble runs, bordering on an obsession.

I cannot tell you how unnerving it is, in its own weird way, to feel that little flicker of hope inside my chest (we don’t after all want to get ahead of ourselves).  But maybe, just maybe, all those hours sitting on the floor chasing marbles – and maybe, just maybe all those hours at the playground and holding hands of a bouncing toddler on a trampoline – were indeed setting the groundwork for tomorrows rather than just filling the time.  And maybe, just maybe, if these pills enable him to focus enough to reach inside himself for the answers and to phrase his need for support in a way others understand, then maybe just maybe the pills too are one of those tools we seek so hard to find.  At least for now, at least during these pre-teen and teenage years.

And maybe, just maybe, at least for now, we need to focus on the outcomes, not on the fears.