Begging for Support

Blog_BegBy SB

There have been times in this FASD journey where I have literally been reduced to begging for the help that our son deserves and needs. Yesterday was another such day. Some boxes had been ticked somewhere in The System. I had been feeling really good for the first time in ages at the support that is in place around our child. It’s been working. It makes sense. The people involved are getting to know each other. There is a common language developing across the teams.

So, of course, without warning, yet another service had decided that because our son was doing well enough (despite having been referred here not long ago due to a series of crises) and because he had had x number of sessions, it was time to boot him out of their system.

Hold on. Wait? What?

Oh no you don’t.

Not yet.

Mamma Bear woke up and with the nicest smile she could manage laid out 10,000 reasons why this was not a good idea. We’d be happy to put all this in writing, of course, not as a complaint, but as a compliment, she said, because your service has made such an important contribution to our son’s wellbeing and because we know statistically he’s just entering the hardest years for those with FASD. You matter. This matters. Too few people out there ‘get’ FASD. We shouldn’t have to waste key NHS resources to help others who might not be familiar with our family and our son’s needs get up to speed on these things. Too often for people with FASD, it takes years for the supports to be finally put in place. Then, when they start working, they are removed. We don’t want that to happen to our son at such a critical time in his life – he’s just turning 14. We could share the stats with you if you like of the addictions, the problems with the law, the homelessness, the vulnerability he is facing as teen with FASD preparing to enter adulthood.

Please, please don’t discharge him from your service. Look – it’s been working.  We just shared with you several examples of how what you have taught him has worked. But let’s be honest, this is work you would normally do with a much younger child. What would normally come next? There are a whole host of other skills he will need to learn and master, other conversations he will need to practice. You can’t honestly believe that we are out of the woods and no other crises are likely to come up?  This service has the ability to see him until he is 19, why discharge him now?  Let’s spread out the sessions…just keep him on the books in case something else heats up. C’mon, let’s think this through.

Please, he needs you.  We need you. Not because what we are learning with you is rocket science, but because he’s now used to you, to this. It’s working. Do you need me to lie and say it’s not? He has a language he uses here. Why should he have to spend a year or more waiting for a different referral, building trust and a way of interacting with another therapist? It makes no sense. Sorry, we know you are not the one who makes the rules, but please don’t discharge him until we can speak with whomever it is who does.

I know I am begging. I am shameless about this. We are literally fighting for our child’s life. I don’t say that lightly, I mean it. We have a few years here to get this right – to give him the tools and the words he will need as he turns toward adulthood. I can tell you stories of people with FASD who we know who didn’t have support and who had to overcome things we don’t want any young person to have to cope with. This support and help matters. How is it possible that a young person with a brain-based disability who is vulnerable in many ways, who has receptive language problems, who is grappling with some of the major issues of puberty magnified by an intellectual disability that makes these years even more of a minefield could NOT qualify for your help?

Absolutely we can help identify specific goals! Absolutely we can work with you on a targeted plan. Absolutely we agree it would be good to get all the professionals around one table to make sure his transition into adulthood is getting in place now while there is time to get it right.

…and so it went…

Another reprieve. Sixteen more weeks. We calculate in our head. This will get him at least into Key Stage 4. This gets us well into the new school year. We will see what happens as these coming months unfold.

For too many, today might have been the end of the sessions. For too many, they don’t even make it this far.

Why is this such a battle all the time? This, in a country that says it is trying to tackle child mental health in a serious way while simultaneously making it so hard to access services?

How is it not a better use of resources to give people skills to be able to help them cope with a lifelong disability rather than waiting until a crisis hits, at great cost to the child/young person and the family? How is it not worthwhile to do more training for all professionals in this condition that experts believe affects more than autism?

How can we possibly leave people with FASD and their families struggling on their own when there are known strategies that can help?

Caring societies are meant to care. They are meant to open doors, make the way easier for those who need an extra hand. They are supposed to enrich the lives of those vulnerable individuals who deserve support, encouragement and understanding.

Not slam doors in the faces of those parents seeking help for a struggling child. Not tell someone whose child has a brain-based disability that it’s their parenting and not compromised brain wiring that is causing the problems. Not kick students out of schools because the educators haven’t educated themselves on the executive functioning and cognitive issues that occur with FASD. These last two haven’t happened to us but they certainly do happen all too often, in too many places.

Yes, today we had a small victory in clinging onto a service that does give us strategies. But we really shouldn’t have to beg.

Seriously, society … we shouldn’t have to beg.

 

 

Food in an FASD Family

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Also available in audio format:

By SB_FASD

Once upon a time, I imagined growing up and having a happy, bouncing home full of people who would love to sit around a table and share elbow-to-elbow in overflowing platters full of fragrant, mouth-wateringly good and abundant food.  In my mind’s eye, we’d help each other prepare the food, dip our spoons in and ‘taste test’ whatever was bubbling away on the stove, laughing, teasing, and reveling in food of all sorts, just as I did in some of the most wonderful memories of my youth.  We’d tease and cajole each other, dig in for seconds, and all help tidy up after the meal was over.  That was my dream.

HaHaHaHaHaHaHa.

As if.

Needless to say, that is NOT the life we lead today in the home I cherish despite its complete difference from the world I knew as a child.

It took years and years for me to ‘let it go.’  Years and years of slowly beginning to understand just how deep FASD reaches into my son’s very being, giving him a different window on this world.  Years and years of hanging onto that belief that one day we would somehow slide into my (previous picture of) ‘normality.’

Prenatal exposure to alcohol can damage the way a person’s brain develops. When it occurs, those intricate and as yet-to-be-fully understood neural connections are compromised, scrambled, damaged. Signals don’t go where they should go. No one really know exactly how or why, but they do know a person with FASD can have some very serious sensory issues, the damage can affect development of other organs and systems – throwing the whole body into imbalance. One part of this complex picture is that it can leave a person with FASD with a very complicated relationship with food. These issues can be compounded if there also was early trauma.

Feeding our youngest was never going to be easy – he was deprived of food early on. He had rickets when we adopted him. He had to learn at 16 months how to eat until he was full, not until his body literally threw it up (as infants learn much, much earlier). Despite his troubles, he is not even so very severely affected – we know of other children with feeding tubes, adults who have been hospitalized because of imbalances in their systems. Despite a slow start, our son is growing, doing okay-ish on the growth charts. Yet, these challenges, minor as they are in the FASD scheme of things, altered the way our entire family interacts with food, changing the way we celebrate holidays and altering daily routines to the point where our house no longer resembles the life I thought I would lead. I am not ‘blaming’ anyone here, just describing a new reality that we have accepted.

I know there are those out there who will be reading this and object to the idea that a family’s routines can be so altered. I know there are families who have managed nevertheless to convene all around a table multiple times each day.  I know it’s possible and I take my hat off to anyone who manages that. But it is not life in our household. Not now anyway.  When our guy was younger we kind of plowed on with it. We could force the issue a bit more. But as he has become more independent and more vocal about exactly what he can and cannot stomach, we have chosen not to have conflict around food in our house.  Well, we try not to have conflict around food.  But, of course, we do.

I wish we had started from the premise that there is ‘always a reason’ for certain behaviours. It might have saved us years of wrangling over food issues. I have said it before – our son has always shown us what he needs, we have just been too slow to pick up on what he is communicating to us. Even now when he is increasingly speaking his truth, we still sometimes don’t really ‘hear’ what he’s saying.

“My body can’t handle it.” As it turns out, this is true, though it took years to diagnose his cows’ milk protein allergy and more years to understand how this might affect so many of his digestive issues. Anything to do with burping, reflux, toileting, soiling, sore tummies or gas all cause great distress for someone with sensory issues. Imagine being a toddler and being unable to explain this. It’s hard enough for a 13-year old. We still don’t know if we know the whole picture, but we do know this one allergy can affect him profoundly.

“It smells.” We have come to realise that our son’s sense of smell is highly developed. Much of taste has to do with smell, so if something doesn’t smell right or good to him, there is no way it’s going down. What smells ‘good’ to him might be completely different than we might think through our more traditional programming. We have made this into a positive – we praise his sense of smell.

“It’s disgusting.” An adult with FASD in an online support group once vividly described his visceral reaction to certain foods or textures. This is graphic. He said when he is being forced to eat something that his body is rejecting it is like being forced to chew and swallow poo. He said there is no rhyme or reason to it. He can’t explain why. It just is. This is important to hear from an adult perspective because we tend to force our children even when they say such things. We have learned that there is no arguing when our son is rejecting food due to a sensory issue.  It also took us a while to understand that he actually enjoys strong flavours – vinegar and mustard and pickled onions and other tastes a child normally avoids, while something like milk chocolate somehow disturbs him. His brain is wired differently.

“Your germs are on it now.” Our son is learning rules for handling food at school. To him use-by dates are gospel. A flame a bit too high on the stove spells danger. Everything to do with cooking and serving food has its ability to send his anxieties through the roof – from the sound and feel of knives and forks on ceramic plates to whether or not someone ‘breathed’ on his food can signal the end of a meal, even before he gets to the point of tasting it.  Lately he has his own tiny (cocktail) forks and spoons, his own plastic and melamine plates and bowls, his own plastic cups. If one of us uses something of his, he won’t use it again. If we touch his food, he won’t eat it. Sometimes.

“I’m not hungry.” He cannot read his body’s signals. We know this from occupational therapists’ assessments. He doesn’t feel sensations in the same way most of us do. On top of that, he has medication for ADHD that actually suppresses his appetite. If he’s not hungry, there is nothing we can do or say to change that. We have found feeding him unusual breakfasts (burgers or salmon) and planning later substantial ‘snacks’ (fish fingers) at bedtime can help ensure he gets the nutrients he needs. This is especially important as we have been unable to get him to take a multivitamin for a while now. We are picking our battles with pills.

His body and mind fixates on things – this is also directly related to how his brain works and maybe even his nutritional needs. He craves foods. He can go days on end where all he wants are avocados or pepperami or salmon or…. If he knows something is in the house that he is craving, it is impossible to divert his attention from it. But these things shift from day to day, making it very frustrating when we stock up on something that is ‘in’ one day only to have it rejected again for months. The situation is not bad enough to lock up cupboards (though we understand that some need to). We just accept that whatever is in the house he may eat. If we have candy, then we only have as much as we are willing for him to eat in one day.

He is a hands on guy. We love it when we cook together. For years “I Can Cook” videos and recipe books played a huge role in our lives. We used to play a ‘Disgusting Menu’ game we made up where we would choose three things that would make the most disgusting food we could think of and then all yell together “Ew! DISGUSTING!!!” We have games about food shopping and food preparation.  He loves looking through cookbooks – we have some from around the world. His specialist school has a goal to teach all their students about 10 meals they can cook by the time they leave school, and he is becoming more confident about fixing food for himself. I have a plan in my head to start introducing him to recipe and food list apps as a way to help prepare him for adulthood.

He is learning about his body – we have Usborne lift the flap books that show the progress of food through the body, we have watched over the years the “Magic Schoolbus” episodes that help kids understand their anatomy. He has studied books about the food pyramid and knows he should ‘eat 5’ every day. He has memorised “Oliver” and he has a bowl that says “Please sir, I want some more” on it, a chopping board with the music script from “Food Glorious Food.” But none of that helps at that point where he simply cannot put that particular food into his mouth at that particular moment on that particular day.

So, we have changed our expectations about socialising over food.  Our best successes are always when we have a range of foods that he is free to choose from – a ‘smorgasbord’ where we always have at least one or two things we know he will eat and then we don’t comment if he avoids other foods. When we are in restaurants (sensory hell for him with all their confusion, noise, smells, anxieties) he is allowed to be on a phone or tablet. We limit holiday sit-down meals and we give him a place he can go to when he wants to leave the table. We have spent our fair share of time eating pub roasts outside so he can swing on play equipment while we eat quickly. If family and friends come over, we often do pizza or BBQs rather than the type of meals I would like to prepare, but which take my full attention – attention I am unlikely to be able to give to the stove when visitors can peak anxieties in many other ways. We let him eat quietly in his room for most meals – it seems to let him relax into it more when he doesn’t have the other anxieties of (for example) trying to figure out how long he needs to endure sitting at the table while others scratch their forks on their plates.

These issues are real. Research supports this. As one small study said, “children with PAE [prenatal alcohol exposure] may be at risk for nutritional deficiencies, which are influenced by inappropriate food preferences, disordered eating patterns, medication use, and the stressful dynamics surrounding food preparation and mealtime.” (Interestingly, I googled and found this quote AFTER I had written this blog post! There are many other studies as well.)

For someone with FASD food can become a trigger point in so many ways. It’s not fair to let this be a battle ground when the person with FASD is clearly struggling. ‘Dig deeper into the why-s of it’ and ‘let it go’ are the two main bits of advice which have helped us re-develop our family’s relationship with food. And yes, we allow ourselves still to giggle over ‘disgusting menus.’

Keeping the laughter and joy about food means a lot to me. Readjusting our relationship with food as a family affected by FASD does demand a lot more patience and creativity than I sometimes feel able to bring to the table, though we will never give up trying.

RIP Sir Noel, The Christmas Dog – An FASD Love Story

Blog_SirNoel
By SB_FASD

[Note: this post also was featured in the Huffington Post UK]

Once in a while you encounter a being so pure that you simply have to believe.

Four years ago, our youngest son was struggling.  He was in Year 5. At great cost to himself he gave everything he had at school, at home, in clubs. But he walked every day in world that didn’t understand him. None of us understood yet that his behaviours were symptoms of undiagnosed brain damage caused by prenatal exposure to alcohol.

He asked and he asked for a dog. He wanted a friend. Someone who would be by his side. No questions asked.  No demands.  He needed one sure and faithful friend.

Unbeknownst to us (though it later filtered back), he asked Father Christmas for a dog at the school fete. He asked for a dog that wouldn’t “bark, whine or whinge.”  (No pressure there!) It was a difficult decision. If we got a dog and it didn’t work out, it could potentially have a devastating impact on him.

Father Christmas sent our son a special letter that arrived on our doorstep on Thanksgiving Day while our British-American home was full of guests. Father Christmas had found a dog he wanted our family to go meet.

The dog’s name, I kid you not, was Noel.

Our little one was barely able to contain himself when we met Noel, a five-year old Cavalier King Charles Spaniel.  Noel’s first action was to lay down to have his tummy rubbed. The grins of that day will stay with me forever.  Our eldest was “euphoric”.  (He was about to embark on a multi-year battle with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis but we did not yet know that then.  Noel would be near him on many a day when he was unable to get dressed and go to school, but that is getting ahead of our story.)

We are a family built by adoption (my husband was adopted and we adopted our youngest son). We knew without doubt we had found our newest family member.  He was ill.  He had been rescued from doggie death row in Ireland.  Like our son, he was traumatized by his experiences.  He was compliant, but not beaten.  His spirit was intact.

And … he was silent.  (Just as our son had been when we adopted him at sixteen months.)

Like some scene from Miracle on 34th Street, Father Christmas somehow knew exactly the right dog to send to our home.  Maybe he knew that we were about to enter some very, very difficult days.  Years of them, actually.

Our youngest son was diagnosed with a Foetal Alcohol Spectrum Disorder (FASD) the following spring. We found out that our son not only had the sensory issues and learning delays that we knew came from his early traumatic experiences, but underlying all of this the connections between different parts of his brain had been damaged before he drew his first breath.  He will forever have problems with executive functioning, abstract thinking, impulse control, adaptive planning. What makes sense to others won’t always add up for our little one. Into Year Six and Year Seven his school life became increasingly torturous.  He kept himself together at school and then bam!  He would explode at home like a can of soda that had been shaken all day and was primed and ready to burst.

Our house was the scene over a couple of years of sometimes spectacular meltdowns.  When our youngest’s brain was overwhelmed the fight and flight instinct would become all-consuming and powerful. He was not coping.  Worse, as he entered puberty, his behaviours were escalating. He started refusing school.  Regressing. He was confused and cornered. It was a nightmarish time. Heart wrenching. He was starting to run away.  He had taken candy from shops. He was fixated on lighters.  When you live it, you don’t always see how these things can creep up over time.

When things would heat up at home, we learned our own little family ballet. Our eldest would put on headphones and block it out via computer games.  Noel would be put out in the garden or in the kitchen where patiently, he’d wait.  My husband and I would tag team, sometimes more successfully than others. These distressing moments would come crashing down around us.

When it was over, Noel would go up to our son, tail wagging, ready for the healing. The first apologies were always for Noel.  How many tears were cried onto that Blenheim coat.  How many hugs he had.

Sometimes our youngest would speak through Noel.  He’d say (in a Noel voice), “Don’t hit Mummy, she loves you.”  “Stop throwing things, they will break.”  “Don’t say mean things, it’s not nice.” “Go to your calm space.”  We are learning about the whole “theory of mind” thing. For sure, Noel helped our son see the world through different eyes.

Our whole family needed this little fur ball. The walks along the river, through the field. The cuddles on the couch.  The impromptu games of fetch in the garden. The big, uncomplicated brown eyes staring up into ours when we too needed a constant in a tumultuous world that could change moment to moment.

He was our shin-high reminder to slow down and just let the positives wash over us.  Our very own walking embodiment of mindfulness.  Noel was our regulator.

As a family, we grew.  We learned techniques and strategies to support our youngest. He learned words like ‘dysregulated’ and became conversant on stress toys and calm spots and neurons that have trouble talking to each other.  We built a support network in our area.  Now there is an FASD Club for other children just like him.  He is not so alone anymore, not so misunderstood.

Critically, one year ago he moved into a specialist school where he is cognitively supported and where they have lots of sensory outlets for him to help him self-regulate (including school dogs).  We have found the right medication to help him focus.  His meltdowns have almost entirely stopped.  We seem as a family to be entering a better place.  Our youngest is more even, calmer, more comfortable in his own skin – though of course we have the teenage years ahead.  Our eldest has come through the worst of his CFS/ME (knock on wood).  I changed from a very stressful job with lots of international travel to one where I now work full-time on raising awareness of and support for those with FASD. We are all of us hopeful that things are on a safer and more settled path.

Sir Noel, the Sweet One walked with us out of the darkness to this brighter place.

Earlier this month we started to notice Noel seemed to be out of sorts.  He had been coughing.  There were visits back and forth to the vets.  Fireworks season here in England in early November really affected him.  His heart never stop racing, his breathing became laboured.

Noel was staying closer to us all – visiting our eldest in his room more often.  He was curling up with my husband more persistently. He very uncharacteristically (once) protectively snarled at the door when the postman came.  I think I knew what I was seeing.  I let him sleep curled up behind my legs for weeks.  My dad had heart problems.  I think I knew.

And so we found ourselves a bit stretched out, concerned as we entered this holiday season – the same time of year when Noel first entered our lives. This year, our youngest and I bowed out of early Thanksgiving festivities and stayed home instead.  Noel spent that day by our son’s side, curled up peacefully for hours next to him on a furry blanket. Our little one had just had a complicated hand operation, trying to give more motion and strength to a hand that had also been damaged by prenatal alcohol exposure. They needed each other that day, those two.  I am so glad they had that time.  So proud that our family had learned enough to not force our son into a social situation that he was never going to manage well. Relieved we have the confidence now to structure our lives to help meet his needs, to change the environment around him to allow him to succeed.  To focus on the positives and not let the negatives consume his whole world as they were starting to do.

The next day Noel was having more trouble. He was quietly seeking sunshine and warmth and simply standing there.  I guess some might say he was moving into the light.  Eyes locked together, that last night I fed him bits of chicken by hand when he was having trouble eating, stayed up with him in the early hours.  Bleary-eyed I went off to a meeting in London the next morning while my husband brought Noel to the vets. He was going to be escorted to an animal hospital for tests personally by the vet, who loved him too.  He died 15 minutes after my husband left.  Noel needed to be alone to let us go.  Just like my dad.

I was in a room full of medical professionals who were discussing FASD at the Royal Society of Medicine when the urgent calls and texts came. These were some leading academic experts on intellectual disabilities, but the thought flashed through my mind, could they understand this? I greatly value their insights but there is no way a book could teach this – the unquantifiable, sometimes inexplicable reality of the ups and downs of life for those living on the FASD spectrum and their families. The tectonic plates had just shifted in our little one’s world. I had to get back before our boys came home from school.  I left the experts to their PowerPoints.

Oh, what a heartbreaking conversation as our little one’s world crumbled. As he locked himself in his room blasting “The First Noel” over and over and over again.  As he called on the genies to make the wind swirl backward in a reverse tornado to bring him back.  As he panicked about whether Father Christmas might be angry that the Christmas Dog had died.  When he alarmingly said he wanted to die and go to heaven to be with Noel.  When we realized he was blaming himself, thinking Noel’s stealing of a forbidden piece of toast with cheese that had been left down low a few days ago might have brought this on.

The next day he once again used a Noel voice to say it’s okay, he had found Grad in heaven, he wasn’t alone anymore and he wouldn’t leave his side.  That he had found a whole field of Greenies (his favourite treat).  Our son was thinking abstractly, and Noel was helping him still to find his way forward. But there is a hole, a huge gaping hole in our little one’s world. It’s one thing to say that love never dies, but another thing entirely to process it.

We are a family that believes in Christmas magic.  While initially we were thinking it would be better to wait before finding another four-legged companion, we realised that due to our son’s perseveration, the way he can sometimes fixate on things, this space needs to be filled.

And, wouldn’t you know it.  A sweet puppy named Joy (I am not making this up – I couldn’t make this up) is coming into our lives in a couple of weeks, right before Christmas. She is traveling to us from Bulgaria.  Another adoption. Father Christmas wasn’t mad at all.  He knew.

Yes, we needed a certain kind of dog to get us through these past four years, and we had the best.  Sir Noel, The Christmas Dog’s love for us and his faith in us was transformative.

But that isn’t the end of this story.

Joy will follow Noel.

 

 

 

Small Change Adds Up

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By MB_FASD

Things can only get better. Is that right? Is that how it works for families with kids with FASD?

Well no. Of course not. Things are quite often decidedly mixed. But they can change for the better. Nothing is static in life, and with appropriate supports and better understanding of the child, the condition and how to help, things can improve.

Take our son. He’s thirteen now. A year ago at this time, he was in crisis. Life was too much for him. He was refusing school a lot of the time, desperately upset when he did go. He was having daily, twice daily, meltdowns. The stresses on him were intolerable.

So, a year on, how is he managing life? How are we managing? Things are a lot better. We couldn’t change him, so we changed his environment. Also, he’s changing. While he’s socially delayed, he is growing up as all kids do. And that makes a difference. Here’s some examples from this week.

One of the simplest signs both of a growing maturity and of a calmer environment is in our mornings. Previously, we had to be with our son all the time. We had to help him occupy himself almost every minute of the day. Leaving him alone would lead to problems. He couldn’t self-regulate and he couldn’t keep his mind calm enough to do activities on his own. Now it’s much, much easier. Albeit with the help of games on the phone, but also with creative film-making and vlogging, our son keeps himself busy, often for hours on end. Since we both work from home much of the time, this is a positive benefit, and it’s a good sign of how his world is changing for the better.

Another positive development has come through school. We’ve discussed before what a huge change the move to special school was. How it relieved the pressure on our son, and how they let him thrive through the most wonderful theatre and music programmes. That’s all true, and he goes out to his taxi without protest every morning, a far cry from the terrible days of a year ago, even if he wishes for the small netbook his mainstream school let him use in lessons, and moans about “too much writing”. He is still happy enough to go, and is clearly thriving under the care of a fantastic, dedicated and talented staff.

Our little man and his Mum were in a shop this week looking for a drink and some sweets. His mum let him go in alone with £5.00 while she waited outside with the dog.  He looked at the price of the slushy he wanted, and the bag of sweets and worked out that they cost. He then worked out how much change he would have, and before he purchased them he asked Mum if this was ok. To our knowledge, he hasn’t put all this together in this way before. He understands that you have to pay for things in shops, and has sometimes been able to work out if he has enough money, but has never proactively done the maths himself, weighed his options so calmly and asked before spending. That is real progress.

He is learning and applying his lessons to life. It’s tied to school. They have a tuck shop in morning break where the kids are encouraged to bring change and make small purchases. Apparently, it’s succeeding. It feeds in to success in his life skills homework book. He was able to tick off that task as successfully done. Homework that makes him feel better about himself, rather than driving him to tears and despair. That is a novelty. And while its harder than the canteen at his old school (there he paid electronically by fingerprint with no concept of the cost of items), it’s better for him in the long run, as it’s teaching him to cope in real life.

Another example.  This evening, he was partly dysregulated. That’s a word he knows and he sometimes understands that he needs to start using calming strategies or go to a safe space before he has a meltdown. I was offering swimming, but he didn’t want to go. He stated that quite forcefully. Then he started building a marble run. All the while muttering repeated phrases under his breath, most of them bad language. Over and over again. Often a sign a meltdown is coming. And often the plastic marble run pieces will fly as his frustration boils over. I was really worried, but I didn’t want to push him out the door. This usually ends badly. But not tonight. He focused in, and he built two big marble runs. He used a favourite toy to calm himself, instead of letting his feelings overwhelm him. Then he proudly demonstrated his efforts to his Mum and me. That’s real progress. In the past either I would have dragged him swimming to re-regulate through physical activity (still an important option), or he would have had a full meltdown. Now, he’s starting to understand himself. And we let him make the choice. We are learning too.

Two days ago we had to go to Great Ormond Street for a gruelling round of three pre-op appointments for an upcoming hand surgery. A nasty rainstorm had every anxiety ramped up in the drive to the train station.  Before getting on the train we purchased some “lava putty” at a toy shop, and during the whole trip he used this very consciously as a calming mechanism. “I am good with sensory toys,” he said.  And he was.  A few years ago there is no way we would have made it through that day.

None of this means life is perfect. Meltdowns happen. Earlier in this day there were indeed parts of a marble run broken, but we minimised the scene and quickly moved on – to the point that a short time later he was helping to tidy up the mess. The challenges are all very real. We can’t relax our guard too much or things do fly.  We have to work to involve him in family activities, and part of the success in less stress lies in the things we don’t even try to do anymore. We had to let go of expectations. FASD is very real and it affects him all of every day. It affects us too.

But, things are getting better. His world is slowly, slowly changing. We can perhaps start to think about a transition to adulthood that can be managed without devastating trauma. We’ll see. There’s a long, long way to go. He’s growing up, and his world is a little brighter for it – and for the changes we have made in our world to help him, and us, get through the day.

 

Slime, Enchantment and FASD

Blog Slime

By SB_FASD

Once upon a time, and twice a week since then, a little boy would make a mess.  Shampoo.  Toothpaste.  Bubble bath.  Washing up liquid. Laundry detergent.  Perfume.  Powder.  Spray deodorant. Mouthwash.  Flour.  Butter.  Bicarbonate of soda.  Food colouring.  Vanilla extract. Broth cubes.  Salt.  Corn flour.  Sugar.  Fabric softener.  Conditioner.  Bath gel.  Even – in a time long, long ago – some cleaning fluids.  Nothing was safe.

This little boy made messes big and small, smelly and sweet.  Sticky and staining.  Hidden and brazen.

For years his parents chastised and chided.  Hid things and redirected.  Monitored consumption and kept to the script of what we are supposed to do with such things.  Teaching, they thought, that it’s not good to waste, that we don’t play with food, less is better than a lot.

But still the messes continued.  In fact, one window may be forever fogged in the corners from some unknown combination that was once sprayed and congealed.

This little boy grew to be a googler.  He became adept at finding Kids Choice awards, and played over and over and over again the scenes where famous stars are covered in slime.  He found YouTube channels full of people doing challenges where they sit in bath tubs full of cheerios and jelly.

Maybe he had tried over the years to tell his parents where all of this was going.  If he did, his parents didn’t hear.  They just occasionally grew angry when the shampoo was gone, when the bath had to be rinsed yet again from whatever-mix-that-was-this-time.

Meanwhile his parents had been googling and learning themselves.  Doctors helped.  Diagnoses opened minds.  The parents began to see this through new eyes, and began to rethink his relentless ignoring of warning after warning.  They began to see he wasn’t being ‘naughty’ – they finally grasped the behavior as a symptom of a need that he could not express. But knowing that wasn’t enough.  They had to change their approach.  Create a different environment.

So they started to buy cheap items for sensory play: foaming soaps, oozy liquids, cheap whisks and plastic bowls.  To the consternation of some, they enabled the mess but fulfilled a need.

Meanwhile, the happier boy kept googling. He watched hundreds of videos.  He turned his attention to a single focus.  Slime.

It wasn’t pretty.  The house became filled with randomly found containers of soapy smelly stickiness.  But this time the parents didn’t fight it.  This time they planned fun trips to the store with the boy so he could pick the ingredients rather than help himself to Dad’s favourite shaving gel.  They googled to try to find UK replacements for Elmer’s Glue and Borax (the holy grail of slime making), knowing how frustrating and abstract this was for their son to understand that some ingredients were not to be had on these British Isles.

They set up some spill trays and gave smaller bowls to limit the quantities for experimentation.  They lined up saline solution and salt, cheap shampoo and hand soap.  And day after day after day, the boy tried.  And he tried.  And he tried.  He just couldn’t understand why it wasn’t working.  He wasn’t so keen to follow the recipes exactly, he insisted a dash of this or a bit more of that was what he needed.  But though it was not ‘successful,’ he was absorbing and learning using his senses.  He was focused.

The household was under a spell.  There were mixtures in the freezer, in the refrigerator, on the counter, and on window sills.  And still he googled and still he tried.  The boy was happiest when mum was sitting by him, watching the videos and listening to the fake American accent he adopted as he mimicked the kids on the videos.

Day after day.  Powder and flour clouds occasionally rose over the sticky concoctions.

Never did the parents say a negative about the mess this time.  They stayed close and helped clean.  They supported, not critiqued.

And then, after maybe 10,000 mixtures, there it was.

The boy made slime.

Good slime.  Slimy slime.  Goopy slime.  They kind of slime you need to put in a leak-proof container and bring to school to show people kind of slime.  The kind you ask mum to stand next to you, with her own little bowl and spoon, so you can show her your special recipe kind of slime.  And yea, though it was remarkably close to the one she was trying to show him weeks ago, it was so much better because the boy made it himself.

He had to learn this his way.  And low and behold, he did.

On this magical night when proper slime finally was created, as the mum was walking out of the room after the high fives and well-dones, she heard it.

The boy’s voice.  Quiet, clear, and confident.

“I AM a scientist!”

He said it to himself.  It wasn’t bravado.  It was fact.

The words hung there in the night.

And suddenly, the parents knew that all of it was worthwhile.  And they were pleased that though their patience had been tested again and again, this time, they knew they had helped their boy on a remarkable journey of self-discovery.

You might come yourself to this enchanted house.  You might still see the huge tray full of half-mixed concoctions. Yes, there are stains on carpets that are ignored, and you might rightly stare hard at the cups and spoons you are given which may or may not still have traces of the taste of glue clinging to them despite the parents’ best efforts.

But the family hopes that if you come through their doors you will see Progress.  This once dark and stormy house has become a happier, calmer place.  It’s far, far from Perfect Land, this much is certainly true.  But in SlimeVille there are pockets of joy and self-satisfaction.  There are bridges across Sensory and Cognitive Needs to Productive Lives.

And what was once a battle has been redrawn into a shared camaraderie, a past-time that opens doors for discussions between them rather than the flashpoint for shouts and frustrations.

The boy had been trying to say this for years.  Once again the parents were too slow to see what he was teaching them.

But they learned, and it helped.

 

 

Four Letter Words for Help – FASD

Blog_HearBeyondTheWords
By @MB_FASD

Adoption UK carried out a massive media blitz this week based on a survey that said 25% of adoptions risk breakdown because of a crisis fuelled by the trauma children suffered in early life. Trauma which leads to aggression and violence in the adoptive family. It is a picture that a lot of families with children with FASD recognise, although Adoption UK never mentioned FASD in their media work. While not all children with these issues have FASD, it certainly struck a chord with me.

F**k. B***h. S**. Again. And again. At 7.30 in the morning. Or 7.30 in the evening.

Most kids with FASD lack impulse control. That includes over language. Bad language.(There is some research that says language is stored in a different part of the brain to other language, so this may be related to brain wiring too.)

We have a lot of bad language in our house. A lot. And, following the advice of professionals, we ignore it. Most of the time. We have to. If we didn’t we’d be in constant opposition to our son, in constant conflict that would help none of us.

He doesn’t mean it. A very clever educational psychologist once asked us “Why do you assume intentionality?” when discussing some of our son’s seeming acts of defiance. That struck home. We had been assuming that our son was being deliberately naughty. Oppositional defiance disorder is a thing. Some kids with FASD have it. Our son doesn’t. He just can’t control his impulses while dysregulated or partially dysregulated. So a stream of insults fly.

In the mornings and in the evenings, around the edges of his medication, he is partly dysregulated. And at those times the language comes out.

It’s very difficult. We struggle with this in a big way. I do especially. Not because of the words, but it gets really hard as it’s tied up in his refusal to let me help him much of the time. It feels like a strong rejection. (My wife tells me I am not seeing just how often these same words are used in her direction.)

But when addressing me, he always wants Mum. At least, when Mum’s there that’s how it is. He calls for something. I go to his room, and get a string of expletives and what feels to me like rejection.

I bring him food, and he won’t even look at it because I breathed on it. Happened just recently, I made mini-cheeseburgers to eat but I breathed on the food. So it’s covered in germs. Sometimes the reaction is physical and can hurt, but the actual blows are the easiest to take, it’s the emotional ones that are harder to shake off.

It’s really hard not to take this as rejection. I know that many times I don’t do a good enough job of showing that I’m relaxed. That I’m not irritated. That the bad language washes over me. Which generally it does. But the constant pushing away his harder to deal with. At a certain level it hurts.

I know he doesn’t mean it because he often does let me do the foot rubs and the leg scratches. When Mum is away, or just out, then all of a sudden my attempts at cookery are suddenly acceptable, and my help with the latest project really needed.

Our son isn’t proud of these moments – he apologises after the fact, he comes back to build bridges.  He stays close.  (He once famously told a deputy headteacher that he had been dysregulated when he cursed at him, he couldn’t help it then but he was sorry – a pointer to the fact that, with self-awareness, change happens).

The ways in which aggression can manifest itself are complex.

In a drive to highlight a very problem, and look for government action to support adoption, Adoption UK risked leaving an extremely negative picture which will undoubtedly put many people off adopting. As an adopted person myself, I would have done it differently. I would have painted the picture as bleak as it needs to be, but then softened it with hope, and a perspective.  In our house we have elements of all of those things that were splashed across the media following the results of the survey.  It’s not that we don’t get it.  But because we know the reason for our son’s behaviour, we frame our approach accordingly.  Importantly, we have a diagnosis in place as we head into the coming teenage years, something the experts say is vital to chances of a successful transition to adulthood.

Once you reinterpret the behaviours as a symptom of the condition, and learn strategies to address the underlying need, the sense of crisis diminishes.  A year ago we were in an intense period of crisis but things can turn around.

If you can’t change the child, then you have to change the environment around the child. You have to reduce reasons for anxiety. You have to adapt their environment so they can live as calmly as possible as much of the time as possible in that environment. You have to give them the time they need to adjust to change, whether that change is getting dressed for school or moving from one activity to another. We’ve changed his room, put in a quiet space and let him have disco lights that calm him. We let him dress how he wants to go out, not how we would like. We adapt because he can’t. And we’re lucky, friends and family have adapted too.

Things have got much better with time as we have learned to do this. He has learned as he gets older to begin to understand his triggers and to ask for help. He has been helped definitely by meds for ADHD.

No child is unchanging, nothing lasts forever. Situations change. And we have to change along with them. I have to do better at soaking up the bad language, and helping guide our son to a calmer place when dysregulated.

What’s the f***ing choice?

*******
P.S. – Support is available for families who are struggling.

Dear GPS: Show Me the Positive Route

Blog Staying Positive is the Way ForwardBy SB_FASD

There I was.  Sitting in front of McDonalds, my 13-year old son in my lap.  Holding him in a tight hug, my chin on his shoulder.  Stroking his arm.  Squeezing his leg.  Rocking him back and forth quietly. Giving him proprioceptive input I know he needed if we had a chance of getting out of here without a huge scene.  I asked him if he knew people could hear him.  When he changed to a lower tone, I understood he was not fully dysregulated and we had the potential to turn this around. Ignoring the looks, I was actively thinking to myself how these days I really don’t care if others stare. They can keep on looking.  My focus was where it needed to be.  It was working.

It’s the last week of summer holidays.  We have nearly run out of our scheduled clubs and holiday programmes: theatre school, gymnastics, movie club.  This week we are more ‘freestyle’ (‘lazy,’ ‘lax’, ‘out of ideas’ are other ways to say that).

Our only plan was to go to the trampoline centre.  This was our son’s request, and he specifically asked that we go there later in the day, when there would be fewer people (I was pleased of the planning ahead and self-awareness this involved).  During the rest of the day, we left him to his own devices for way too long.  (So, yes, maybe ‘lazy’ is the phrase I am searching for.  Or ‘worn out.’)

It was time to go.  Optimistic and eager for an unusual family of four outing, we trundled off.  His elder (neurotypical) brother had decided to come too.  It took all of about five minutes before we hit a literal roadblock.  A traffic jam due to road works meant we had to redirect our route.  Big mistake.

Things, as they say, took a turn for the worse.

England’s bumpy single-lane country back roads are not the best place for a child with anxiety issues who had recently surreptitiously nearly OD’d on ice cream bars.  His anxiety levels skyrocketed.  We were not sure we would be able to continue.  We did eventually get there, barely seat-belted in (the belt and the bumps were making his tummy feel sick). My every bit of maternal patience was at its end (I was travelling in the back seat with him.  His brother was in the front seat.  This is our usual flying formation).  We all had to be quiet. Everything was wrong, disturbing him. He had said at one point, “Maybe I just shouldn’t go in cars.”  This was his way of saying he was really seriously struggling.

I am glad we got there.  On those single lane roads that cut through fields, the reality is we didn’t have much choice.  He had a fun one-and-a-half hours of flipping, twisting, jumping, parkouring and cartwheeling.  I got to see his new aerial move.  His backflip-into-front-flip.  His many hours of premiere gym sessions this summer have clearly paid off.  His mastery of skills is awe-inspiring.  And a great way to get his ‘ya-yas’ out, as we call it.  His elder brother came off after about 45 minutes, saying he has no idea how the little one can do so much jumping for so long.  Neither do I.  His energy has always inspired me. And yet, I could hear from the floor some of our little guy’s more excited sounds increasing as time wore on and the disco lights came on.  I suspected we had passed the therapeutic usefulness of this place, and we might be in for it when it was time to leave.  We started discussing strategies for the ride home even before he got off the trampolines.

Hot and overtired, he insisted on frozen yoghurt and a slushie when it was time to get off the trampoline floor.  We didn’t argue.  We knew we were on razor’s edge.  He didn’t eat either of them.  They tasted ‘disgusting!’  At least they made it into the trash without disaster. I will call that a win.  We had already made a deal with our eldest about McDonald’s.  Which of course meant the little guy wanted Pizza Hut.

And so there we were.  He fixated on Pizza Hut.  Repeatedly insisting he wanted pizza.  I tried to not contradict.  “You can have pizza.  Another night.” Choice words flew back at me as we crossed the very busy car park.  I told myself I was not caring (much) what others thought.  At least he didn’t run.  He didn’t hit or throw or break anything.  There is progress in this scene.  Even as we sat outside McDonald’s rocking together staring at the Pizza Hut which OF COURSE was directly across from us, I was trying hard to stay positive, to not let my own frustration show.

Then, finally, I heard it: “My brain is saying it wants pizza.  Just pizza.”

To an onlooker, that might have seemed like more of the same.  But it wasn’t.  This was a different phrasing.  His way of explaining to me, not demanding.  These are the moments that are coming more frequently.  He is increasingly verbalising his self-awareness. Even if it’s rudimentary, this is a cornerstone upon which much can be built.  This, this was a sign of having reached a short-term goal. I have trained myself to recognise these whispers of hope.  Conditioned my responses (though still not perfect.)

“I understand you want pizza.  I understand your brain wants pizza.” Several times I repeated the word pizza, so he felt heard, validated.  “Your brain is only thinking about one thing. That happens to a lot of people with FASD.  It has a name: Perseveration. You have to train your brain to think of something else when it gets stuck like this.”  Yes, I literally said that to my nearly dysregulated son, while we were rocking together right there in front of the older teenage crowd who were watching us as they were blowing off time at McD’s before the movies.

Sometimes it seems I can feel it or see it when he ‘hears’ something and stores it away.  His body goes a certain kind of still.  There is a pause.  I know even in the state he was in, he heard that word “perseveration” – we will return to it another day.  Many other days.

My husband had ordered a happy meal for him.  We walked to the car.  This time before we got into the potential torture chamber, we all stopped.  I said to our little one: “It’s your choice.  If you aren’t ready to go in the car, we can wait until you are.”  That seemed to work.  He thought about it.  He said he was.  And maybe he really was…until he discovered the lack of BBQ sauce in the bag and a phone was thrown (but not hard, it was not harmed, thankfully and the toss was instantly regretted.  Again, mini-points toward a win).

Seatbelts on, we tried to proceed out of the parking lot without BBQ sauce, but things were escalating and we decided to turn around to get some.  I think that helped, he felt ‘heard.’  Our eldest was a star, gently talking to his brother, without taking it personally this time.  The trampoline park exercise had helped them both.

With the aid of newly acquired BBQ sauce and back on our normal route, the ride home was quiet.  He went up to bed with no further incidents.  The rest of the night was okay.  (Well, with a minor blip of husband losing something leading to a house-wide and unsuccessful search.  Oh, and some last-minute scheduling snafus we only discovered while husband packed for an early morning work trip…Our lives are messy around the edges these days.  Imperfect.  We are winging it more than usual, even for us. We are frazzled. Frayed.  It is very clear we are limping along in the last week of summer.)

Even still, after it all I was left thinking:  I am getting better at ignoring some things and have actually started to train myself to focus on other things.  It is getting easier. I can ignore the stares – or if I can’t ignore them, I allow myself to stare back as I did the other day on the tube, rather than shrink away.  (If you think you can stare at my child, I can stare at you.)  I can increasingly ignore the tut-tuts and the sideways disapprovals.

More importantly, I can listen much more attentively to the nuances of my son’s – both our sons’ – moods and needs.  I explained to our eldest when we got home that I think that was progress tonight, trying to help him see beyond the roadblocks, to see the markers of progress we are reaching.  Six months ago or a year ago we would have experienced total disaster this evening.  As it was, it was awkward.  It was tense.  But it was not a disaster.

So, here we are, nearing the end of the school holidays.  This year it has been better than most summers, but far from ‘easy.’  Some may say I am the eternal optimist/clutching at straws, but that is the only way I can see through to the tomorrows I want for our family.  Like entering instructions into a GPS, this determined choice to take the positive route is the only roadmap that will get us there even if it is not the most direct or obvious way forward.

I believe we are heading in the right direction.  I insist on amplifying and marking these signs of hope.  As the song once said, “it’s got to be the going, not the getting there that’s good.”

Yes! Follow THEIR Dreams, Not Yours

Blog_Yes

By SB

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

Blog_Teen
By SB_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.

 

 

 

Fighting Fear

Blog_FearOfFutureBy @SB_FASD

Help me.

I am a strong woman, from a long line of women who don’t back down or shy away from hard times.  But one thing has the power to bring me to my knees and that is fear for my children’s tomorrows.

The day we received the diagnosis* for our youngest son, my picture of the future imploded.  I nearly suffocated with the news.  We were swimming, uncertain what came next. We dove into Google where I soon kept coming across that one horrible image that is shared everywhere comparing the brain of a ‘normal’ child with that of a child with FASD…maybe you’ve seen it – that image where the folds of the brain seem all flat and shriveled, like the future I saw slipping away.  That photo knocked the wind out of me.   The post-diagnosis period was hard.  It took a long time to get to solid ground.

It took way too long for me to learn that photo no more represents my child’s brain than a flat and two-dimensional landscape represents my child’s future.  (While people share it with good intentions, the photo is an extreme case – a research photo that should perhaps never have escaped medical journals.  No one can live with a brain that looks like that.  It does show the damage alcohol can do when it does its worst, but I will not share the image in case it sets someone back like it set me back at a time when I needed to see forward.)

Fear of the future.  It’s always there.  We can put on a game face and we can meet the challenges head on.  But in a world where even doctors refuse to diagnose and support people who face this life with brain damage due to prenatal alcohol exposure, this journey deflates even the most determined of us all.

It’s pretty darn hard to get up the gumption again and again to push for support and services when those pushing back have degrees dripping off their walls.  The internal scream just builds and builds until my head is reverberating with the thought – this is so unfair!  This is a medical issue.  My son has Fetal Alcohol Syndrome, the leading cause of non-genetic intellectual disability in the Western world as noted in a report by the British Medical Association.  It is one of the Fetal Alcohol Spectrum Disorders (FASD).  FASD is real – it isn’t nothing, it’s not just ‘a label’ to excuse ‘bad parenting’ – it’s a lifelong brain-based disability known to have more than 400 co-occurring conditions.  It leads to devastating secondary disabilities if the underlying needs aren’t met.  And yet parents, carers and guardians are often asked time and again why they want a diagnosis by people who should know better – as if the diagnosis is some kind of optional add-on rather than central understanding needed for people to navigate their lives.

Why isn’t the medical field out there ahead on this, pushing prevention and early detection rather than making family after family feel inept, inadequate and undeserving of diagnosis, treatment and support?  That’s a serious question, one I am still waiting for someone to answer for me with anything that doesn’t smack of stigma-laden prejudice, self-centered justification of a pub culture that can’t look itself in the eye, or a burdened bureaucracy prepared to sacrifice some of its most vulnerable in the name of saving some small bit of money now despite knowing it will cost more in the long-run at the expense of too many promising young lives.

Fear of the future?  Heck yeah, when you are staring out at this world knowing at some point in the natural order of things you will die and your child will live on.  Knowing he will live on in a world that doesn’t care to understand him or his disability, a world that seems more likely than not to throw him in jail rather than support him or make accommodations for his needs.  Fear?  Darn right I am fearful.  I see the shadow in people’s eyes, as this sweet young boy turning toward adolescence is starting to lose his balance, getting swamped by the hormonal storms coming his way, not fitting in the boxes society has lined up for ‘good boys.’  Fear?  Oh yes.  I fear.  I hear too many stories, feel the anguish of too many lost young adults and families when these young souls get caught up in the chaos of young adulthood, the challenges of being emotionally and socially unready in a world that wants them to grow up faster than they are able.

Frightened and fearful.  Yes, that is me.  More times than I may seem.  But I refuse, downright refuse to let that fear stop me from doing everything I possibly can to create the best possible chance for my son to have the future he deserves.  I will stare down anyone who gives him ‘the look.’  I will drown any professional who doubts his right to services with enough paper and proof to convince them to either deal with his FASD or refer him forward.  If someone tells me he is ‘incapable of learning’ as did one educational psychologist early on (pre-diagnosis), that person sure as heck will never be within a mile of my son again.  I will fight against this fear.  And encourage any others I can to hold tough, stand tall, push forward.  Because together, collectively, we can change this.

We are afraid of the future, yes, but we focus that fear to make us more powerful and stronger advocates, determined to learn what we can to create the best possible outcome for our son and the other children with FASD who deserves a chance.

But let’s be honest.  It is lonely and scary to stand where we are on the near edge of the adolescent years.  There is a way to bridge the wild waters of the coming teenage years.  Even as I know the fall down can be hard and brutal, I know there is a way to make it across.  I have the honour and privilege to know adults with FASD and their families who have made it to the other side.  They are good people living good lives – contributing to society in all kinds of ways.  They are loved and loving.  Their lives may not be easy but they are profound. They have truths to tell and songs to sing.  No, I can’t – I won’t – let the fear paralyse me now, or we will stumble, fall, slide.  I will not get caught up in the trap of negativity.

I keep eyes forward.

I walk side by side with our son.  Come what may.

He struggles against me, yearns for an independence he cannot yet handle.

Every step scares the heck out of me.

I hope (and yes, for him I even pray to whoever might be listening) that this walk across these teenage years will be gentle.

If he is in trouble, may he get help not judgement, compassion not intolerance.

If he strays into dangerous waters, may someone offer him a lifeline and not an anchor.

If he loses his way, finds himself drifting or spinning out of control, may someone ground him rather than send him further away from me.

May he not get tangled up in something that can drag him down.

If he calls for help but in a language others can’t hear, may someone see his shining soul and recognise his innocence and bring him home.

This boy had to fight for existence without love for the first 16 months of his life.  The world has already proven once to him how cruel it can be – it left him speechless, untrusting, hungry for something more.

Please, let me suppress this fear long enough to get him to solid ground.

Help me help him.

——-

[*If you are new to a diagnosis – please see this resource: Information for parents/carers following a diagnosis of FASD by Dr. Cassie Hunt, Highly Specialist Clinical Psychologist. You don’t need to flounder as much as we did.]