A Timely Reminder About Dysregulation & FASD

Blog Dysregulated.png

By @FASD_Dad

Today wasn’t the best day. And I made it worse. We know our son doesn’t do well with multiple activities in the day. I know that when he starts to become dysregulated we have to do the work to keep things calm, quiet and to make the environment the best it can be to help him regulate himself.

Today, I didn’t do that. Today, when he was getting more and more dysregulated because he didn’t want to go out, I made it worse. I let his stress and tension communicate itself to me, reflected it back at him and made his downward dysregulation spiral worse. So instead of getting down to his level and talking calmly with him; or just backing off and letting the meltdown stop, I did all the wrong things. I told him we had to go. I told him he had to put his shoes on now. I told him we were going to be late to see his friend dancing. I made it SO much worse.

We had flying shoes. We had slamming doors. We had curses and yelling.  We had tensions between Mum and Dad. And I just couldn’t deal with it. My stress became his stress because I didn’t use the techniques we have learned.  The five minutes we needed to get out of the door became 30 minutes, 40 minutes. Eventually, in his room, all alone, the dysregulation and his meltdown slowed and stopped. Stopped enough that we could deflect. Get back on track. Restore some calm to the day, to his mind, to him.

And in the time that followed, we got a reminder. Several people at the big FASD conference happening in Vancouver tweeted this slide from a presentation*

Dysregulation

  • Sensory dysregulation interferes with child’s ability to access and apply strengths on demand
  • BUT FASD = neurologically dysregulated in more than one area of brain function
  • Therefore dependent upon the external environment to provide any regulation, especially under stress
  • “External Brain” at all times and in all settings to ensure safety and success
  • Dysregulation also ensures that behaviour is more reactive than intentional

“The ‘external brain’ needed at all times and in all settings to ensure safety and success” – well, we know that but it didn’t work today. I was the external brain and instead of ensuring safety and success, I had my own little flip out. I couldn’t keep it together. The stresses and strains got to me and I let my son down when he needed me.

His behaviour was indeed reactive, and he was reacting to me projecting stress on to him. His brain, unable to process, got stuck in the moment and I didn’t help him out of it.

This slide was a great reminder. He needs us to be calm and stable, even when he is repeatedly aiming a string of choice vocabulary at us. Even when his shoes are flying. Even when he’s lashing out. He needs us especially then. As the slide points out. As I already knew, and could not act on.

So thanks to @EMcWilliamsHew2 for tweeting the slide. Thanks to the presenters who wrote the slide. It was a good reminder.

I’m not beating myself up too much. We all get tired. We all make mistakes. We all are under stress and have times when our actions and reactions are not what they should be. I did turn it around. I got him to put his shoes on and get in the car to go swimming. He had almost two hours of physical activity and joy in the pool. That’s what he needed to relax himself, to get back to a good place. In the car on the way there, he quietly explained this was what he wanted, that he didn’t want to go and sit and watch dancing – although he would have liked to do dancing. So often, he tells us what he needs in different ways, and sometimes, like today, we don’t hear that.

He did miss his friend dancing, but there’ll be other times. We’ll make sure the day is prepared better next time, and he’s in a place where he can access the dance show, where that’s what he wants to go to.

But, I do have to remember. He needs me when he needs me, not when I’m ready to be needed. That’s my take-away from today. I’ll do better next time.

———-

* The presentation was “Including Sensory Dysregulation in Every Diagnosis of FASD” by L.Scott, L.Elliot, L. Wahabe (PEEL Program in Ontario) at the 7th International Conference on Fetal Alcohol Spectrum Disorder, 3 March 2017

Sensational Media Hurts Those With FASD

we-love-a-child-with-fasd-2By FASD_Mum and FASD_Dad

Warning: there are extremely offensive and disturbing quotes from the media in here about children and people with FASD, about birth parents, and about those who adopt complex kids.  We do not endorse any of them.

We were feeling good about the holidays.  Better than usual.  This is a hard time of year for many affected by FASD, and our family too has struggled through the seasonal merriment and mayhem over recent years.  During the 2-1/2 years since his diagnosis, we have taken great strides to better understand and support our 12-year old with Fetal Alcohol Syndrome and he also is better understanding himself.  Those moments that used to spiral out of control are becoming, for the most part, containable.  The tension that weighed us all down is lifting.  It’s still not easy, but with joy, love, informed support, (medication), and lots of sensory toys and play, we are getting there.

Yes, we were feeling ok.  And then an article from the Daily Mail popped up in our newsfeeds.  It slapped us in the face with its sensationalized headline and a picture of a child model screaming like a banshee.  “They open their homes to adopt – then find they’ve taken on youngsters who wreck their family. Why do we continue to BETRAY loving parents…”

An all-too-uncommon article about FASD in a major British newspaper is normally something those of us who push hard for greater attention to this issue celebrate.  But not all media is good media. This article lets down families living with FASD that need help.  It betrays children awaiting adoption by discouraging prospective parents.  It is destructive, contributing nothing positive to the national debate.

The article talks about how “[t]he children being adopted now are the offspring of our drunks, our derelicts, our damaged and our junkies.”  The result, it says “is an untold scandal, blighting the lives of thousands of well-meaning families.”  It invokes demonic imagery, talking about how educating these kids can be “the Devil’s own task.” It talks about how a child might be cuddled sweetly on the sofa and then without warning suddenly leap and “hurl herself” at her adoptive mum, hitting her, screaming “whore” and “bitch” and other “dark, dark words.”  The author warns “That might not happen tonight. Maybe not tomorrow, either. But it will happen again; it always does” as if there is nothing that can be done to help.  The article says nothing about the love and light our kids bring to our families, nothing about their talents and the contribution they make. No. In this piece, all our kids are demons who destroy.

The article does highlight the pressures some families face and it addresses the lack of support and funding for these families, but in doing so it repeatedly implies families who adopt kids with FASD are doomed. The clear implication is that people should not adopt, especially not the children of “those” people.

The article lit up the passions of social media.  At the time of posting this blog post, it has been shared more than 2,600 times (and counting), with more than 1,200 comments.

The sensationalism of the story was abhorrent enough.  But it is in the comment section where one can see the depth of prejudices we have to overcome if we are going to get society to deal with this hidden disability.

We are posting below some of the excerpts of those comments.  We can’t just dismiss them because we might not like the political leanings of a media source.  If these comments were written about any other segment of society we would be outraged.  We need to call them out.  We need to face them.  We need to debunk them.  These bigotries underlie the surface of polite discussion here in the UK on topics related to Fetal Alcohol Spectrum Disorders.  They fuel the stigma that stops our children, our young adults, adults with FASD, and their families from getting the support that they need.  We should never be so grateful for media attention that we allow this sort of article and these sorts of comments to go unchallenged.

Ready?  Here is what some of the dear British public thinks after reading this piece:

“Just put the little so and sos down.  Good for them, good for us. Cheap too.”

“Adopting an evil child is God’s way of punishing you for going against his wishes.”

“Trash begets trash that gets circulated around.”

“Some children are uncontrollable, and no amount of love and care will ever change them.”

“If a woman is a drug addict or an alcoholic, and generally a risk as a failed mother, she should be forced take medication to prevent her having kids.”

“It’s hard but morals, ethics and our way of dealing with the dregs of society needs to change. Why should happy, well balanced families be put at risk for being well meaning? These children have no future with a normal family.”

“I worked as a clinical psychologist for 20 years … I would never, never adopt a child nowadays. Not even a newborn. They are, essentially brain-damaged and cannot typically function in a normal family.”

“There’s no way I’d adopt, sorry… I don’t want to be beaten, stabbed or killed, thanks!!”

“Don’t do ‘everything possible’ to keep a premature baby of an alcoholic or drug-addicted mother alive, just to prove it can be done.”

“The genetics always came out eventually.”

“The problem today is that parents are not allowed to discipline a child in a way that would achieve obedience so the child becomes uncontrollable.”

“Think twice before adopting these kids. Fostering is like a test drive. If you don’t like you can always return to sender.”

Let’s be clear.  Kids with Fetal Alcohol Syndrome are innocent.  They have brain injury and other physical disabilities that are the result of exposure to alcohol in the womb before they ever drew a breath.  THEY DID NOTHING WRONG.  They are here, among us.  There are many, too many, in need of a lasting, solid home.  Yes, they will grow up to be teens, young adults and adults. Getting them the right support and stability matters greatly to their lives – it can literally change the course of their lives.  It can save families and relationships if they can be reached while they are young.  It can save them when they face the struggle of leaving home and trying to live independently.  There are no guarantees, but it matters.

Britain likes to think it is a caring community.

So, step up.

Experts estimate (because proper studies haven’t been fully funded and conducted) that there are as many kids out there with FASD as there are with autism.  Provide the information about prevention in the schools, in the doctor’s surgeries.  Stop faffing about whether or not your grandmother said drinking a pint gave you iron and follow the latest advice from the UK’s chief medical officer (who presumably has more scientific background than those urging you to drink up):

“If you are pregnant or think you could become pregnant, the safest approach is not to drink alcohol at all.” 

Stop thinking that it’s only those with addictions and living on the edge that have kids with FASD.  Accept the fact that those expensively dressed young educated, professional women who are increasingly binge drinking are a huge part of the problem too.  Provide help and assistance to at-risk young women and young mothers.  Fund the addiction counselling programs.  Provide proper healthcare.  Proactively fund and encourage early diagnosis of FASD and the related 400+ conditions that can co-occur.  Educate the social workers, schools and the other professionals to spot kids at risk for FASD earlier rather than later, once the secondary behaviors kick in (too often as a result of the lack of early support and understanding).  Get the parents, foster carers, special guardians, adoptive parents, midwives, teachers, doctors, educational psychologists, all those around the child who need it all the information they deserve.  Discuss and provide access to the therapies and medications that help some.  Put it all on the table, don’t sugar coat anything.  Face this epidemic as a caring society should.

We deserve a proper national conversation.  Together, we need to stare down those nasty hidden prejudices and dispel the stigma that is holding back the help we need once and for all.

Yes, absolutely, it’s important to highlight the struggles of children with FASD and their families, and the problems in the adoption system.  But we should never blame the children for their condition, portray them as demonic monsters beyond help whose only contribution to a family is to wreck it in the way this article chose to present them.  We should not trample the feelings and accomplishments of those young adults and adults with FASD whose lives are courageous and challenging.  If they are hurting or stumbling, as a society we need to lift them up and not knock them down – especially at times when their parents cannot fill that role for complicated reasons.  It takes a village.  We are that village.  We need to open doors of opportunity for this vulnerable population, not prepare more prison cells.   We should not scapegoat and shame birth-parents, but work cooperatively to help prevent further kids from being born with this brain injury.  We need to provide respite and compassion for those who are on the frontline caring for and nurturing those with this condition.

Life can be tough in our households.  Sometimes brutally difficult and even scary.  Certainly overwhelming and tiring.  We do need to tell that story so we can show that all families of kids with FASD need more support, that schools need resources, that the transition to adulthood is rocky and filled with dangers.  We need to show that support is needed and isn’t there. But in telling that story we must aim for positive change.  Because at the end of the day, beyond the frustrations, hurt and pain, that is what we all want, positive change.

We love a child with FASD, and he and others like him deserve our respect.  He is entitled to a chance at a life with dignity in a compassionate community to which he can contribute and from which he deserves support.

[Oh, and for what it’s worth we reported that comment about “putting them down” as inciting violence and hate.  Thankfully it seems to have been removed.]


Please see our resources section for more information and links.

Please also see the National Organisation for Foetal Alcohol Syndrome-UK (NOFAS-UK) response to the Daily Mail article

See also: A serious point about lack of post-adoption support is lost in what is a deeply unpleasant, slanted piece by Caoilfhionn Gallagher, Doughty Street Chambers

Adopting a Child With FASD

we-love-a-child-with-fasdBy FASD_Dad

Adoption is an important part of our family story. I was adopted in the UK back in the 1960s. We adopted our son with FASD a decade ago. Whenever we speak publicly about FASD one of the questions we are always asked, in more or less delicate form, is whether we regret adopting our son? Would we have chosen a different child if we had known he had FASD? What it is like for me, having been adopted, to raise an adopted child?

The decision to adopt was made easier for us because my parents did a good job with me. Ignoring the advice of the time, they told me about my adoption from the earliest age. They made sure I always understood I was their son, no different to birth sisters that followed. A genuine part of the family. This was at a time when parents were advised, unbelievably, to hide adoptions to avoid difficulties.

So if we had known our son has FASD, would it have made a difference? This is an important question, all the more so this week. This week is National Adoption Week in the UK.  One study showed that in Peterborough as many as 75% of the children available for adoption were exposed to alcohol in the womb. Should those kids, many of whom may have FASD, remain in the care system, denied the stability and life chances a loving family can bring them? Of course not.

My own background meant that the idea of shopping around for the perfect baby was horrifying to me. I couldn’t imagine browsing images of children as if from a mail order catalogue. A child is not a fashion choice. If you have a birth child, you take what fate brings. So it should be with adoption. We had both decided before our first son was born that although my wife was in a very high risk group for delivering a baby with Downs Syndrome, we wouldn’t take the tests. We didn’t need too. He was our baby, part of our family. In the event, our older son was born with no disabilities. But it meant years before we got to adopting our second son, we had considered what it meant to raise a child with a disability and we had decided that we could.

Raising a child with FASD isn’t something to be undertaken lightly, but neither is it something to be avoided. Kids with the condition need a family’s love just like any other child. We didn’t know our son had FASD when we adopted him, he wasn’t diagnosed for another 8 years. But we did know he had major issues, including developmental delays. He was 16 months old and completely silent when he came to us from the children’s home where he had been since birth. He also wasn’t walking – although he very quickly did. We knew there was something. We just didn’t know what. Before we adopted, when we asked the authorities what the something might be their reaction was to offer to find us another child. We said no instantly. We had already fallen in love with our little man, and shopping for the perfect baby wasn’t on the agenda. (Incidentally if you think any child is perfect then adoption may not be for you, at least not until you know a lot more about kids).

So what do we advise? Read a lot. Learn about FASD. Read about the problems your child is likely to have. How school will be difficult. How bedtimes will be really hard. How your child might go from a zero to sixty meltdown in a few seconds – things will fly, people will get hit. Toys and windows may be broken. Friendships will be hard, and the gap with peers will grow as your kid grows. The challenges will not go away.  Marriages and other relationships will be strained.  Some days may be long, very long.  Some of the effects may not be knowable for years.

Don’t go into this wearing rose tinted glasses. Don’t avoid reality. Understand this is lifelong brain damage.

But if after doing all of your research, you feel you are ready, do go into it. Know there are things you can do as a parent to increase this child’s chances for a happy, fulfilling, and successful life. Factor in that your child will bring a huge amount of love into your lives. That their smile will brighten the darkest day. That their achievements will warm your heart and make you proud, especially because they will have worked harder than any kid you know to get there. That they will amaze you with everything they can do. That they will make your family complete and teach you some of the most important life lessons we can learn.

Take your decision carefully. An adoption is a lifetime decision. A child traumatised by early life events, simultaneously living with FASD, would be irreparably damaged by a disrupted adoption. Social workers and others need to be much better informed about FASD, in order to better inform potential adopters. The services and support offered to those adopters need to be much better tailored to children with FASD and the needs of adoptive parents.  Information and concerns should be shared by all the officials, not smoothed over or tucked away.  No adopter should be blind-sided about this most important decision.

But, all this considered, go along and find out about adoption. See if it will work for you. If the answer is yes, don’t turn a child away just because they have FASD. They need you in their life, and you need them. Your life will be the richer for them.

Anxiety & FASD

we-love-a-child-with-fasd-2

By @FASD_Dad

Anxiety. We all get anxious about things. We’re late for an appointment. Can we afford to get a repair on the car done?  Does that girl I like like me too?  (Turns out she does and in a long and roundabout way that led to this blog.)

That anxiety is real, but compared to the anxiety our son feels, every day, all the time, about everything, our anxiety is trivial.

Our son is a boiling kettle of anxiety, says the counsellor who is helping us learn how to better care for him. That’s his normal state. That’s why, when something goes wrong or doesn’t go as he expects, he blows into a full scale meltdown almost immediately. A meltdown where things get thrown. Where kicks and punches are thrown. Where his little frame is rigid with tension because he simply cannot bear the pressure in his brain. Where his senses no longer work to help him interpret the world around him, but are screaming at him to fight! Fight! FIGHT!

So what causes this terrible anxiety? Well, in common with many kids with Fetal Alcohol Syndrome, pretty much anything. Our son has such a hard time understanding the world around him, his social relationships, the tasks he has to manage at school, that everything causes him to worry.

In the last few days it has manifested itself in different ways.

Does the dinner he loved yesterday taste very slightly different today? Or is it a little too hot? Or a little too cold? That’s a massive sensory problem which can mean dinner is thrown across the room. Or it could just mean a refusal to eat a meal and a retreat into his safe space to watch videos.

Are we going to a new gymnastics club? Somewhere unknown? That’s a huge source of anxiety which means it is really, really hard to get out of the door. We have to find exactly the right bandana to make it ok. Is the new gymnastics club different? Do they do the exercises slightly differently to the previous club? That means they’re doing it wrong, so he can’t join in, he has to sit and watch. And, because the hall is smaller and the noise too intense, the sensory input becomes too much and his anxiety levels start to go through the roof. So we have to leave. And now we need to find another gymnastics club because his original one was all girls and him, and that’s worked for several years but now he wants to be with boys, doing boys gymnastics.

Are we off for a walk with the dog? Well, the dog mustn’t be let off the lead because if he’s off the lead he might run away.  If he is out of sight for a second he might have run away, and the panic in our son’s voice is palpable. The dog, you see, ran away once. He got far enough away that he was taken to the pound, and we didn’t get him back for 24 hours. And so, for our son, the anxiety of losing his beloved pet is ever present. Something else to add to the list of things that add to his anxiety.

There’s swimming at school. But the message didn’t get to us, so he has to do hockey instead of swimming. That’s not right because the timetable says swimming.  Right there, that’s enough to spin him out of control and into meltdown. But at school, barely, he holds himself together, and then at home as he lets the pressure valve go.  With us he knows it is safe to let go, the meltdown starts and goes on and on. And a week later, the worry about whether we know it’s swimming and does he have his swimming kit in the bag comes bursting out as we try to get him out the door to school. Yes, we know, it’s here. Is it here? Yes, the kit is here. I have swimming today, do I have swimming?

The pressure his anxiety puts on him is horrible.

So what’s the effect of this? Of living on the edge all day every day? Of worrying about everything around you in such an intense way.

We’re constantly worried about him and his mental health. We are constantly concerned that our son will crack under this pressure, lose what ability he has to cope with life.

What is the long term effect of living with this level of anxiety on the rest of the family? For our family it puts us all on edge. Our elder non-FASD son is a calm boy, but when his mum and I argue, as we sometimes do under the pressure of dealing with yet another meltdown, he cracks and shouts at us to be calm. His worries are just below the surface too.

For us, it means living with uncertainty all the time. Wondering when the happy, smiling little boy in front of us will suddenly flip into a raging little bundle of doubts and fears, unable to process his anxieties and lashing out at those around him.

So we’re trying to give him tools to regulate himself. A mood chart, from a calm, blue sea to a raging storm so he can learn to express how he feels, something he really cannot do very well at the moment. We try to use it with him when he’s happy as well as when his mood is deteriorating, helping him to learn a vocabulary to tell us about himself.

We’re trying to be better about regulating the environment around him. Making sure each day that he knows what will be happening, what we’re doing, what he will do. No surprises is the rule. Over the summer we had stopped using the family white board to write was coming up – and he just asked us to start that again. A small sign of growing self-awareness – he needs to know the routine of the day.

When his mood cracks and the signs of meltdown are obvious we’re improvising on tools the therapists gave us. We use sensory stimulus to distract him from meltdown. Pretending with a variety of pressures that he is in a sandwich, he is cheese that melts; or a piece of hard pasta that gets wiggly when it’s cooked; an ice cube that melts, or an egg that cracks. At the moment this technique has a sometimes remarkable effect. Twice in one day it altered a mood that was darkening, and forestalled the descent into full sensory dysregulation.  We have learned some tips to try to head off the meltdowns.

We have to help stop the kettle boiling over, and find a way to take the pressure off so it isn’t ready to blow at any second. It’s tough. But for his sake, we need to find a way.

FASD Awareness is Needed in Classrooms Every Day

we-love-a-child-with-fasdBy @FASD_Dad

This morning was good. Our son woke happier than he has for several days. He ate some breakfast and watched some Tom and Jerry. When the time came he was happy to get dressed. And after ten more minutes of videos – when he searched for and found clips from Titanic which his English class is studying – he put his shoes on, picked up and his bag and hurried out the door. School mornings are rarely this easy for him or us.

Since today is Foetal Alcohol Spectrum Disorder Awareness Day, it’s worth reflecting on the week we’ve had as school started again. Our son’s full Foetal Alcohol Syndrome has made it a very difficult few days, and it all happened because of a detention that should never have been and a teacher who hasn’t read, or at least hasn’t understood, information about FASD and our son despite the best efforts of the school SEN team.

Our son went back to school on Monday. He goes to a mainstream secondary school, he’s now in Year 8. He gets a lot of support from the SEN team and many of the teachers are excellent, differentiating his work and making a real effort to adapt their lessons to his needs. His FASD means he is a very visual learner, with pictures and videos a key part of the education process for him. Using computers, tablets and other technology also make it easier for him to access subject matter. But even so, he struggles with maths or abstract concepts.

The route back to school wasn’t easy. As the Autumn term approached our son became more nervous – worried about his timetable, who his teachers would be, where his locker would be and every little detail that was outside his control. He became easily dysregulated, and it was hard for us to keep family life on track in the days running up to last Monday.

And then it happened.

In the second period of the new school year, an English teacher gave half the class detention for not completing homework on the book Holes over the Summer. Including our son. And his world fell apart.

He’s afraid of detention, even the possibility of being given one increases his nervousness of school tenfold. Coming so early on his first day back, this was a hammer blow.

The class had been studying Holes in the Summer term. This is not the first time this teacher has taught our son.  He struggles with novels at the best of times. Reading long chunks of text is extremely hard for him. He finds it very, very difficult to concentrate, he loses the thread of a story easily. This book was doubly difficult. He didn’t like the story about children being randomly punished by being forced to dig holes. When it came to the back and forth in time sections of the novel, forget it. He just didn’t get it.

He’s so keen to do the right thing he even tried to do the homework over the Summer, despite having found the book almost impossible to understand last school year. One task last term was to do a newspaper article on the significance of a bi-racial kiss in early 1900s America. Forget it. He simply didn’t understand what was being asked of him. The levels of abstraction were such that his damaged brain could not get there.

Knowing his difficulties, the SEN team has worked for a differentiated set of work for our son. The teachers are supposed to respect this. He wasn’t even supposed to do this homework, let alone be punished for not doing it. He fell apart in tears in the class as the teacher berated half the class for not doing the work.

And the consequences of not respecting his need to access work in a way he can understand, of failing to respect his right to be educated in an appropriate way?

On Monday evening he had a meltdown. A big one. Things flew, swearwords too. It wasn’t a happy evening.

On Tuesday morning he refused school, terrified of another detention. He screamed, he sobbed, he hid in his bedroom. We eventually got him calm enough to get to school by 11.30. But that evening, his world fell apart. He had a meltdown like no other. His levels of anxiety reached a peak in a crescendo of wailing and sobbing that wracked his body. Cut off behind an invisible barrier, he was broken by experience. This built up and then flooded out of him over hours until finally, exhausted he slept.

On Wednesday morning as anxious as ever he refused school again. We were able to get him there by allowing him to go out of uniform to speak to the SENCO. He did stay, but not happily. In the evening he couldn’t manage guitar lesson, although music is his biggest love and this was something he had begged to do. Dysregulated and ready for meltdown, as it was a hot day we let him go to the pool instead.

On Thursday school refusal again, and again he went out of uniform and only because he could follow me as I rode his scooter until he was ready to hop on, and only into the learning support room until he was calm enough to join his classmates for the day.

And today. Today it’s all forgotten. Titanic is filling his imagination and I left him with his TA drawing a picture of a First Class passenger on the ship as they got ready for the day.

But the week has been lost. Our son has been torn apart for days by anxiety that should never have been forced upon him. A busy teacher with insufficient training in dealing with special needs hasn’t taken the time to understand our son, and has done him damage. How much we won’t know for a while, but possibly a lot. Enough this week for us to think hard again about local SEN schools and for a family counsellor to rush an appointment with their service’s other professionals, so worried was he about our son’s anxiety.

It is government policy to mainstream kids with special educational needs where possible. They don’t provide the resources or the training for that, but that’s the policy. We are legally obliged to send our son to school. They’re legally obliged to educate him. They have to meet his needs.

The SEN team does a superb job. They really work with him. They bring in outside experts to get advice and support. They provide the tools he needs to get through the day. Having never knowingly worked with a kid with FASD before, they educate themselves about his condition generally, and the work to understand him in particular. So do many of his teachers. His geography teacher last year said he shows ‘signs of brilliance’, and he did that in her class because she looked at him and saw him and understood him, and provided work for him that he could do because it was in a form he could understand.

But some don’t. Some are just too busy with the stresses and strains of modern teaching. The lack of resources, the huge amount of reporting of data, the strains of an ever changing curriculum, the lack of training on SEN teaching all take a toll on their willingness and ability to teach our son in the way he needs to be taught.

That’s why FASD Awareness Day is so important. As many as 5% of people may be somewhere on that spectrum, most undiagnosed. Awareness is vital, in the first place, for prevention. No-one needs to go through life with this preventable disability. In the second place, it’s vital as the brain damage of FASD means that our son and everyone with the condition needs life-long support to deal with the stresses and strains of everyday life. For our son, this means his teachers need to know about and really get what FASD means. How they have to do their job differently to accommodate special needs that aren’t his fault. Being aware of FASD means being able to give a kid who’s struggling the tools he needs to get through the day when even walking through a crowded corridor from one lesson to the next is traumatic. Be aware.


Please see the education resources page ideas on how to help a person with FASD in the classroom.

Thank You Teachers! But Did You Really Understand Me & My FASD?

Dear Teacher -

By @FASD_Mum and @FASD_Dad

Dear Teachers,

Well, here we are.  We have survived this year together.  We didn’t know at the beginning how this was going to work.  You have never taught a child with a diagnosis like mine – Fetal Alcohol Syndrome and ADHD.  Which of course doesn’t mean you have not had students like me in your class.  Statistically Fetal Alcohol Spectrum Disorders are as prevalent as autism.  But that is a whole ‘nother story, as they say.

An entire year has gone by since we started this adventure.  I have turned up nearly every single day.  I have walked the crowded halls to the sound of bells that make my head split.  I have navigated the maze of my schedule – with more than 18 classrooms and teachers.  I have braved noisy lunchrooms with their smelly foods and intimidating social circles.  I have put my hand up time and time again in your class.  I have smiled when you have said hello.  I have tried to find the answers you were seeking.  I have worn my school blazer with pride.  I have trained myself to try to sit in chairs several sizes too big for me.  I have carried my backpack through each and every day.

Some mornings, I was so anxious about school that I refused to get dressed.  I became so agitated I screamed and threw things.  I couldn’t find the words to tell my parents how confused I was by the tests, how upset I was by that detentions, how bewildering I found it because I didn’t understand what you were saying. How sad it makes me that I don’t get to hang out with my friends after school like the other kids do.

I have brain damage that happened before I even drew a breath because alcohol crossed the placenta when I was in my birth mother’s womb.  My neural networks were damaged.  The different parts of my brain have trouble communicating.  I have trouble accessing memories.  Abstract thoughts and concepts are really hard for me as my executive functions are compromised.  My brain processes things more slowly – quite often I may only be hearing every third word you say.  If you put two instructions in one sentence, I will likely fail to hear both. If I don’t see things, touch things, absorb what you are telling me in some other way I may miss your main points.  I know I am not understanding things in the same ways the other kids do, that’s why I get confused and despondent.  I have an aide who helps me.  She is a great support for me.  But she doesn’t know the subjects the way you do.  I am supposed to be in the front of the room by you.  I am supposed to have one on one with you too.  Some of you do this.  Some of you don’t.  I get it that every teacher has their own stresses and demands.  I know there are hundreds of students that depend on you.  But right now, this note is about me.

I received my end of year assessment, but my Mum and Dad won’t let me read it.  Mum nearly cried when she read it.  Which is too bad, since there is so much in there to celebrate.  They want me to see all the positive comments.  Some of you wrote I have “worked well.”  I am “enthusiastic” and “confident.”  I have had “lessons of absolute brilliance” (Mum and Dad say thank you for that one, that also made Mum cry in a different way).  I have been “superb” in some lessons.  I am “gaining confidence” and I have “really enjoyed some topics.”  “With significant support” I have “created successful outcomes in a range of areas.”  For a kid who sometimes cannot face going out the door, these comments show how hard I try and how I can succeed when I get to school.  My parents know this was possible due to hard work by teachers and especially the special needs team who are the heroes of my story.  None of this happens by accident. We all feel very, very lucky and privileged to have so many great people helping me access mainstream education.

But then there are the buts.  And that is why Mum and Dad won’t let me see the paper.  Not all of you, but most of you have included comments like he “does not appear to be able to remain focused for more than five minutes” and “he needs constant support on a one to one basis to keep him focused” and “he needs to be constantly reminded to stay on task.”  Several of you have noted that when I lose focus it can lead to “disruptive behaviour” and at times my behaviour has been “inappropriate” and that I “need to understand this.”  My behaviour can be “silly and distracting to other students at times.” You tell me with “continued effort on focus” you are sure I could achieve.  But when you removed my support for assessments, I “failed to gain the marks required to achieve a grade.”  You note that I enjoy the “practical aspects” of a lesson, but quickly lose interest in the “theory.”

The thing is, we know I have trouble focusing.  That is due to the physical disability in the way my brain is structured.  If I were blind, you would not write that I should try harder to read.  My need for support and my difficulty staying focused is directly related to how my brain is wired, and has nothing whatsoever to do with the effort I put into my school days. There is no need to write this on my report and it’s really not helpful when you give me low grades for effort.  How do you think that might make me feel, when it is just not true?  Can you not imagine that for me, just being in school every day is such an enormous effort that when I go home I often fall apart?  Can you not imagine the immense effort it takes for for me to just sit still trying to take in what you are saying, especially if you have not had the time to give me some key words or some visuals or word maps or break down the theme of the class into very small steps for me to follow, or any of the other suggestions from the specialists. Don’t you see that sitting and concentrating in each lesson takes more effort for me than a top student puts into his or her day?

And about those behaviors – yes, there are times when I become overstimulated and dysregulated.  But these times don’t happen because I am being willfully naughty.  I am not trying to frustrate or annoy you. A detention can’t change my behavior.  My brain is overloaded and can no longer cope. I need to go somewhere to calmer for a little while to allow my brain to reset.

So, yes, I do require “continuous support” to “achieve lesson objectives.”  We know that.  You don’t need to write it on my assessment.  I will always, during my entire life, need support.  The format of that support will change as I mature.  We have great hopes for using technology better to keep me on task, to help me focus, to aid me in those areas of weakness like mental maths and time keeping.  I will always put greater demands on you as a teacher than most other kids. In our inclusive educational system, I am entitled to access the curriculum in the ways spelled out for me by the specialists. I am entitled to the accommodations, scaffolding and support that directly relates to my disability.    Those are the things I need to succeed.

I know you are busy.  I know the powers that be are putting more and more demands on you and that through no fault of your own you are being forced to teach to national tests in new are more harrowing ways.  I know a student like me makes it harder for you to work with the new inflexible regime. I know you are a teacher because you do care, because you are motivated by a love of a subject and a love of sharing knowledge.  I know I may not be able to share the intricacies of your subject matter with you in all the nuances you hope a student might absorb.  But I can make correlations.  I can access things from a roundabout direction. I will learn in my own way, especially using the tools the experts provide, and I will sometimes surprise and please you.  I can even excel in some areas that favor the music, arts, physical movement and strength.  I am functioning at an emotional age about half that of my peers.  While I am gaining maturity more slowly, things will even out for me in my mid-20s.  We just have to keep me in a positive frame of mind through these hellish teen years that are to come.

You can help by continuing to see the me beyond the brain damage..  I am a kid who tries hard every day – even if all you see is me fiddling in my pencil case, I am trying, trying, trying to organize myself even though I don’t really get what that means.   I am a kid who actually knows more than your tests will ever be able to elicit from me, and that is okay.  Just don’t underestimate me.  And don’t, please don’t, ever again tell me I am not making an effort. I am trying so hard that when I get home I often fall apart.  I cannot simply try harder and magically overcome my disability.  Mum and Dad and I are working to learn techniques and skills to manage, so are the special needs team at school.   I can eventually become more independent as we put in place supports and scaffolding to make that possible, but I will never be able to work completely alone.  With your continued patience and guidance, I will some day be a strong, happy, and contributing member of our society.  The suggested supports you put in place to teach me in your classroom, the very process of showing me it is okay to have some visual reminders and to break down tasks into small and manageable chunks – these strategies are as important as the subject matter to me and will allow me to be a successful adult who is not ashamed of the need to explain to people what I need to learn and work to meet our shared goals.

None of us is expecting a whitewash here. We need your professional assessments to see if I am growing and learning. The amazingly wonderful and maybe miraculous thing is, by your accounts, from what you have written, I am.  Sprinkled all through this report is enough good news to keep us all skipping through the summer days that are coming.

It’s just that sadly, too few of you seem to “get” me.  I am a fighter.  I have overcome more than you can imagine in my short lifetime.  I have other related physical and sensory issues that are all part of the mix of the damage done to me by in utero exposure to alcohol.  I am a pretty remarkable guy.  I wonder how many of you have read my full file.  I hope if you have me in your class again you will really ‘see’ me.  I hope you will reach out to my parents more.  They want to help you to help me.  They can be allies.

Please understand, I treasure you all.  I value teachers and all that you have done for me. I know too often people don’t show the respect for you that you deserve.  Our family – we are HUGE fans of teachers and educators and anyone who spends their days surrounded by a thousand faces of the future that will be.  We love schools and books and assemblies and new technologies and the way the world opens up to kids who walk through school doors.  We are big supporters of a well-rounded education and are so pleased that you still teach the arts and music and drama and PE and that your environment is so upbeat and positive.  We know that takes so much time and effort.  We sincerely wish you all a very relaxing and happy summer.

And me, I am going to play in the sand and cope as best as I can with all the anxieties and fears of a new routine that is bearing down on me.  But I will walk through those doors more confident and capable next year because of all you have done for me this year.

So, thank you.

Love,

Your student

…the one in the back row who fidgets a lot, the one who one of you said shows signs of ‘brilliance’ at times, the one who happens also to have FASD…


Dear Teachers – PDF for printing and sharing

 

 

Expectations Versus Hope

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

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

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

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

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

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

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

Unfortunately, that was truer than I realized.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My head is pounding.

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

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

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

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

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

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

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

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


R.J. Formanek* responds:

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

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

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

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

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

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

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

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

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

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

And expectations can kill.

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

Expectations are human nature.

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

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

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

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

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

An Epic Experience

Music

By @FASD_Dad

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

The Most Powerful Video on FASD We Have Seen

The Most Powerful Video on FASD We Have Seen.jpg

By FASD_Mum and FASD_Dad

We don’t normally do posts like this, but we were both riveted to the screen this morning.  This is a perceptive and authoritative video explaining Fetal Alcohol Spectrum Disorders and the life-long impact even small quantities of alcohol can have on children before they are born.  If you would like to better understand our child, and others like him, please give yourself 26 minutes to watch this film.  The young 10-year-old girl in this film could be our son.

And please, support those around you who are or may become pregnant by helping them to avoid alcohol during those precious months. Experts in this video show the proof that even a small amount of alcohol in utero at the wrong point in development can have profound and enduring effects on a child.  And please also encourage our societies to help meet the needs of those loved ones who are struggling every day of their lives with this hidden disability.

Our Son with FASD ROCKS!

Today was a good day. Today was a day we can celebrate. And when those days come around, we have to celebrate our kids. They’ve earned it. They need it.

By @FASD_Dad

Sometimes the day ends well. Sometimes our kids have a triumphant moment. Sometimes something great just happens. And when it does we have to celebrate it. We have to celebrate these moments because kids with FASD have such bad self-esteem, such poor self-image that we must do everything we can to build them up. And we have to celebrate them and their achievements because they earn that praise with every fibre of their being when they overcome their difficulties and shine amongst their peers.

Today, for us and for our son, was one of those good days. He had a triumph, and we weren’t even there to see it. But his school friends were. And kids who didn’t even know him until now. And they were cheering him to the rafters.

Today was the first heat of His School’s Got Talent. Our son has been preparing for this for weeks, since he found out it would happen just before half-term. He’s learned the song he wanted to sing – Salute by Little Mix. He’s rehearsed the dance and got it down so well from their video that the members of the school dance club were amazed he could do the whole thing perfectly, no errors, and completely in time with the video.

He’s practised in his bedroom in the mornings and evenings. He’s practised in our hallway. He’s practised in the living room. He’s practised on his way to school and at the breaks. He knew that song so well. And in his head there was going to be confetti. There would be a crowd cheering him along. There’d be a light show. He was going to be a pop star.

And yet we were fearful. As with other FASD kids his organisational skills are poor. The dates for the heats shifted several times, and we only found out by accident this morning that today was the day. We didn’t know if he knew. The school SENCO did, she’d moved a meeting so she could watch him, and be there in case something went wrong. She was sure he knew, but we weren’t. And if the big moment was sprung on him, it might really throw him, and instead of being a good moment it could spark a meltdown and a dreadful time. We worried that he’d always planned to have a stage costume to perform in, but because we didn’t know the day had arrived, he didn’t have one. Would this throw him? The absence of his favourite headband could also provoke a meltdown, it has before, and that was just for a concert in our living room.

We texted his cousins to let them know to go to the hall at lunchtime. We texted his brother and asked him to take some friends along.

And then we got the video his brother made on his phone – made sweeter because we can hear him cheering on his brother.  All our worries melted in a feeling of elation. Our youngest son was triumphant. We know he can sing and dance beautifully, but now we know he can perform to a big crowd too. There he was on the stage, the hall darkened and full of kids. And he won them over. The opening act. He was dancing and singing as the spotlights changed from red to green. There was even a smoke machine to build the atmosphere. And when he shouted out ‘Sing it with me’, they did. They sang along and they cheered. And as he belted out the final words and the music died away, the kids in the crowd were chanting his name over and over again. For those moments, he was a pop star. This was everything he could have imagined it would be.

Many of his classmates and the older kids already liked our son, the cute little kid who doesn’t quite fit in. The one who doesn’t really talk right. The one who isn’t quite socially adjusted. And here he was giving the performance of his life and showing them what he can do given the chance. And how.

We met him outside school and waited for his brother. And while we waited the kids flooded by, hundreds of them heading home for the weekend. And they greeted him. High-fived him. Told him he was awesome. One lad came up to him and said ‘Man, you had crazy energy on that stage. You rocked it!’ A groups of older boys came by and we heard them telling each other ‘That’s him, I want him to win, he’s brilliant.’ So many of them just pointing him ‘Look, that’s Tolka, he was great.’ And our son lapped it up. His beaming smile never left his face. He jumped up and down excitedly and sucked in every bit of praise.

He’s had a hard few weeks at school. He’s been in trouble. He’s struggled in lessons. His self-image has taken a few knocks. But in this moment all that was swept away. He felt good about himself, better than good, just great! And he had earned it. He has a beautiful voice. And today he used it to win over a whole school. Today was a good day. Today was a day we can celebrate. And when those days come around, we have to celebrate our kids. They’ve earned it. They need it.