A Timely Reminder About Dysregulation & FASD

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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

Why a Broken Screen Can Make Me Feel Good

we-love-a-child-with-fasd-9By @FASD_Mum

I am willing to admit I might be grasping at straws here, but today the smashed screen of our son’s Amazon Fire Kid’s tablet represents progress to me.  I get that I may be taking counter-intuitive parenting to an extreme, but here’s what I have been thinking ever since this happened at about lunch time today:

  1. He instantly communicated he understood the trigger for him.  “I don’t like it when the games time out before I can finish!”
  2. He recognized that he could have handled his frustration better. “I always throw things too hard.”
  3. He came to find me after it happened. “I broke it.”
  4. He trusted he would not get in trouble.
  5. He tried to problem solve. “There aren’t too many cracks on it.”
  6. He did not have a meltdown, but wrapped up in his duvet like we have encouraged him to do.
  7. He did not break my phone, which was also within reach at the time.
  8. Within 15 minutes we were able to recover his good humour, and jolly him out the door to singing lessons, without any rooms being destroyed in the process.

From the parental side, we did better today (if we don’t count our one epic fail, which I will address below):

  1. We responded when we heard a problem, but not by going in with sirens blaring even though we kind of knew a piece of electronics had just been sacrificed.
  2. By mutual, unspoken consent I went forward first, gently asking what had happened.
  3. We did not erupt in frustrated and harried verbal sparring between us. We kept the tones low.
  4. My immediate response was to reassure him. “It’s okay.  You’re not in trouble.  Where is it?  Let me have a look.  It’s OK.  You didn’t mean to break it, did you?”
  5. I quietly moved the broken tablet out of view, and started to scratch his back.
  6. He was making noises from under the duvet cocoon he had created – I quietly asked him a question about something unrelated to get him talking and back into a verbal mode. I kept repeating it quietly, to give him time to register the question. “What songs are you going to sing today at voice lessons?”  Wait a few moments.  “What SONG do you think you are going to SING today?”    “Do you have a SONG?”  Repeating the main word, understanding he might only be hearing every third word or so until he calmed further.
  7. Without too many words, I helped him out of pjs and into his day clothes, even avoided things flying when he was having trouble getting his foot into his beloved new gold-plated heeled boots which @FASD_Dad had very wisely brought up, a silent encouragement that yes, he could wear these out today and isn’t that cool?
  8. I instantly responded positively when he suggested his singing teacher might like it if he were to bring her a treat, like sweets. Of course I knew he had ulterior motives, but I commended him on being very thoughtful in thinking what the teacher might like.  I did that on purpose, to start those positive feelings flowing again, to get to “yes” ground again after the negativity.
  9. When I said to @FASD_Dad that our guy wanted to stop at the shop for sweets, he had already heard the deal, quietly agreed without batting an eye and without mentioning smashed tablets, and they were off.
  10. After the singing lesson, @FASD_Dad kept him busy with some of his favourite Saturday activities- they went to the charity shops (where he scored his 2000th marble run), filled up on food at Subway (which was vital), before visiting his grandmother and The Auntie.
  11. When they came home, we all sat and watched a music DVD in the living room that is still filled with Christmas lights and the (artificial) Christmas tree because our guy (and his older brother it must be admitted) don’t want us to take them down. So we haven’t.

So, why am I feeling good?  As I say, I am willing to admit it might be grasping at straws.  The little one is up in bed.  He is calm and at peace.  We are all calm and at peace.  The house is kind of pretty in the multi-coloured glow.  Rather than feeling like a failure doomed to bad luck for not taking down these (minimal) decorations, I am seeing it as a positive.  I am responding to our guy’s wishes, giving him control over this – it hurts no one and he’s right, it’s kind of nice.  I guess I am feeling good because we are learning.  We are far from perfect, but we are learning.

Readers of the blog may recall some earlier catastrophes with tablets and phones, including The Worst Day Ever.  These incidents were horrible, traumatic, and had knock-on effects for weeks.  But, we have learned.  We got the Amazon Fire for Kids when it was on sale because it has a great kid-friendly replacement policy (or at least, we will see how parent-friendly that is in coming days).  We understood there was a risk, and we researched and took precautions so that we weren’t losing a ton of money.  We don’t get any electronics now without buying a replacement package.  Our son has a disability.  Things happen.

I also am pleased because even though electronics are a hot button between my husband and I sometimes, we worked through it today, in synch, and we are okay.  I am feeling good that our guy knew he could come to me even if something pretty bad on the scale of things in his world had happened, and that there is not one hole in one wall as part of the aftermath of frustration and hurt and disappointment that a favourite piece of electronics had been broken.

He will face some natural consequences.  He will have to bring an old Leap Pad with less grown up games on it during his 30-40 minute taxi rides to and from school until we can get the replacement sorted.  We will not hurry that process.  He will be without this for a while.  We will gently reinforce with him during this time that when he is feeling frustrated he should put down electronics and punch a pillow if he has to, or take deep breaths.  We will talk about this a lot, just not now.

Yes, it is counter-intuitive parenting.  In the world I grew up in I would have been sent to my room, grounded, and I would have had to work around the house to earn money to replace the item.  And that all would have made sense for the kid I was.

But we know our guy has brain injury that means he cannot always control his impulses.  That surge of frustration when that totally-annoying-game-just-did-not-give-him-enough-time-AGAIN-when-he-was-working-so-hard-and-was-nearly-there…that ARRRRGHHHHH moment that we can all recognize floods his system and because of the way his brain networks are wired, the other ‘thinking’ part of the brain sometimes just cannot kick in until, oh no! It’s already broken.  And-now-what-should-he-do?

There is no amount of ‘punishing’ that will change that wiring of his brain.  The best we can do is put in place strategies to ensure conditions are the best possible to avoid him getting that frustrated or overstimulated to begin with.

So, if there was an epic fail today, it was mine.  I was on the computer from the moment he came downstairs this morning and I knew he was on electronics for too long.  I made a choice this morning not to enforce our ‘no screens weekend mornings’ policy that has been completely ignored by us all over this past hectic month.  I knew it was getting late, he hadn’t eaten properly, and that he was likely to be unhappy about having to get ready to go to singing after a cozy morning at home staring at screens.  I could have, I should have headed this off.  He even said to me yesterday that I am on the computer too much.

I am not saying that to have others tell me I shouldn’t feel bad, and I shouldn’t kick myself.  I am not.  As I said, I am at peace.  I feel good.  I think I am speaking for my husband as well.  Today, we showed signs of growth as a family. We all of us – big and small – spotted where we slipped up, we talked about where we didn’t ‘follow the script’ and what impact that had.  We comforted each other, and we moved on and recovered.  So, yes.  It was a good day.

But I am not going to take credit for that.  Our guy is a super star. He is working at things.  He really is.  He is trying hard, in his way and in his own time, to implement the strategies.  He is more resilient than he has been in a long, long time.  We believe he is having a new chance at being able to do this because such huge pressures have been lifted from him by switching to a special school.  He had been using every last ounce of his will power to get through those school days in his old school.  Just yesterday, we were discussing that his appetite is starting to climb as well.  He actually wants to eat much more often than previously.  Across the board, we all are progressing.

So here’s the small hope we toss out there to those who might be needing it:  if we could crawl out of the hole we had been falling into, others can too.  I guess that is the main thought for the day.  These parenting strategies are not really rocket science.  But they rely on us practicing and developing different reflexes.  This doesn’t happen over night.  It is a process.  I am sure the pros out there are shaking their heads reading this, and I imagine they could find 50 things we did wrong today.  I am sure readers have spotted some things we could have done better as well.  We welcome advice and comments.  We are far, far, FAR from perfect.  We are muddling through.

But none of that changes the fact that for us, today, this was progress.  And in a world that moves fast and is full of tense and challenging moments, we have to take time to celebrate the positives.

So yes, I am choosing to look at that broken screen and allow myself to feel good.

Coming Up for Air?

we-love-a-child-with-fasd-6By FASD_Mum

And, breathe…

Five days.  Five days without one meltdown.  Five days without our son on the floor pleading with us to stay home. Five days without having things thrown, without anything broken.  Five days of this slight loosening of the grip on our chests.  Five days so far at his new school, and we are starting as a family to come up for air.

We know these are early days.  We expect to hit bumps on the road.  The week has not been easy for our guy, we see that on his face where he has been biting his lips which are sore and raw.  He has had so much to take in, so much to absorb.

And yet, there is a peace about him, a contentment that was not there a week ago.  He has come home each day tired but calm.  He doesn’t have much to say, this process is being internalized.  When we ask him, he says his new school is good and his lips are sore because of the cold outside.  We see he needs not to be peppered with one hundred questions.  We sit close.  We rub his feet.  And we wait for a meltdown that just doesn’t come.  We breathe in.  And we breathe out, a little more relaxed.

There are surprises. Already the education is breaking through. The first day he tells us they watched a movie, “The Tempest” by William Shakespeare.  He corrects my pronunciation of one of the German composers.  He pulls out a keyboard that hasn’t been used in ages.  He has been painting, bringing out games he has not played in ages.  He records a TV documentary about WWII and lays on the couch and watches it two afternoons in a row.  Plopping on the couch and watching TV may seem mundane to some, or even your parental nightmare, but in our house, this has never happened.  He has not previously chosen an educational program, and just watched it for an hour.  This is the sort of quiet that has descended that we are not sure if we can trust yet.  Perhaps, once it all stops being so new at school then he won’t be so tired and we may yet again see the after school ramped up behaviors.  Or perhaps not.  But for now, we have space to breathe deeper, lungs starting to expand.  We know enough to hang onto such moments.

Perhaps being around teachers who understand him, who listen as he sings, and who spot his growing distress due to the noise in the wood shop and who take him out to a quiet space matters.  Perhaps being in a place where he can pop into the sensory room at lunchtime and play with Orbeez matters.  Perhaps being allowed to wear hairclips in whatever way he wants to keep his growing hair out of his eyes matters.  Perhaps petting the school dogs and feeding the guinea pigs matters.   Perhaps not having to wear a tie or an uncomfortable blazer matters.  Perhaps not hearing loud bells ringing every hour and not having to face a huge scrum in the hallways several times a day matters.  Perhaps, and we hadn’t anticipated this, focusing on Candy Crush during the 30-minute drive in the car to get to and from this school matters as it is providing him transition time that he lacked before between home and school.

He is going to sleep on his own again, he doesn’t need me by his side to unwind at night.  He is not as oppositional, not so easily discouraged.  OK, he is learning some new vocabulary and occasionally using it.  A couple of the other kids who have less social boundaries bewilder him – he is not used to kids wandering during lessons, using curse words and not being sent out of the classroom.  But if something confuses him or throws him off, he recovers more quickly now.  Not everything is sending him into orbit.  I feel the hypervigilance we had been living under is slowly beginning to melt away.

Our relatives are rejoicing.  They tell us they have not seen us look like this in ages.  They see a glimmer in our eyes that has been missing for some time.  We are still a bit stunned.  Not yet fully relaxed.

People are asking if we wish we had done this switch sooner.  The answer to that is that we needed the past year so he could benefit from the expertise of a seasoned and experienced SENCO, deeper insights from teachers and the teaching assistants who worked so closely with him, and the pile of reports done by others they brought into in the secondary school to give us the missing in-depth specialist assessments – detailed pieces of the puzzle that we lacked previously.  These evaluations enable us to understand his educational profile better than those that we had in hand from the primary school.  They also provided the convincing body of evidence needed to enable the powers that be to make a quick decision to move him to special provision.  So his time in the mainstream school was useful to him and to us, even as it was hard.  But we are very, very happy to have found a place that seems to be better meeting his needs.

We are not sure what to expect this weekend.  I am guessing there will be a release of tension at some point.  Things may yet sail across the room.  We will do our best to get him some physical activity, to keep things positive, to keep pressures at bay.  I hope we can see him laugh.

But five days…I will hold onto that.  Who knew five consecutive days could be had without that heart-wrenching dysregulation that had become commonplace in our home?

I, for one, had not realized that we had forgotten how peaceful it can be to simply breathe without waiting for a crash or a bang or other signs of a small, pressured soul poised ready to explode.

I hope, I hope, I hope that we are breaking free of those times.  But I am sure we must be vigilant and protect these hopes from disappointment.  I am sure we are not out of the woods.  FASD is a hard, brutal taskmaster – throwing many hurdles in the way time and time again.  But five days…they mean something too, and we have to celebrate when we can the successes that come our way.

 

 

Anxiety & FASD

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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.

Calming Down by Melting Cheese & Getting Outside

We love a child with #FASDBy @FASD_Mum

We have been trying to work on ways to help our 12-year-old son with FASD to release tension. As the pressures build with the end of the summer and the beginning of school coming, he has been finding it really hard lately.

A specialist reminded us of the progressive muscle relaxation technique – tensing muscles and then releasing the tension.  He gave the example of holding hands out – pretending to squeeze lemons and then releasing them or pretending to be a turtle, squeezing your shoulders up to put your head in your shell and then relaxing them.

Recently, during an out of control moment, I surprised our son and redirected him by introducing this idea again and giving him some additional physical input.  It started by making a pillow sandwich on his bed with lots of pillows – then we gave it a twist by telling him he was melted cheese.  By the time we were done he was giggling and thinking of different foods that start off hard and then become soft.  As he was acting this out, I was encouraging him to tense his muscle groups and then massaging them and helping him to release the tension…it was surprisingly fun and certainly better than the full on aggressive meltdown he had been having before we started ‘playing’.

It’s important to remember that kids with FASD can have an emotional age about half their physical age, so while it may seem ‘childish’ to do this even with a pre-teen or teen, they might really enjoy the time to be silly (and it can have a very positive effect).  Our son is a bit obsessed with cheese so that was a main focus, but you can choose your food…

  • Pretend you are the cheese on a ham and cheese toastie. The cheese starts off solid (tense all muscles) and then melts (relax all muscles).
  • Pretend you are a piece of spaghetti – stiff and straight until you go into the pan, and then you go all loose and squiggly and get curled up onto the fork.
  • Pretend you are a sausage in the pan, all straight and solid. Sizzle as you cook and then pop!
  • Pretend you are the ingredients for ice cream – we stir you up (head to toe quick shaking). Then you go frozen solid.  We take you out of the refrigerator, and then you start to melt.
  • Pretend you are the cheese on pizza as it cooks – starts off solid and then gets all loose and melts everywhere.
  • Pretend you are the cheese in a burrito – wrap up in a blanket, tense, and then pretend you are cheese melting.

That is how we improvised it – but here are some tips from some professionals:

Relaxation script for kids

How to do progressive muscle relaxation, AnxietyBC

Progressive Muscle Relaxation for Children, A.S. Koeppen

It’s also great for caregivers too:  Progressive muscle relaxation exercise for caregivers

To do the technique properly, you are supposed to do it in this order: Stress Management: Doing Progressive Muscle Relaxation

And here is why it works:

“This process of relaxation is guaranteed to happen because it is based on a principle of muscle physiology. Whenever you create tension in a muscle and then release the tension the muscle has to relax. The muscle does not have a choice. It must happen. The interesting aspect of this process is that the muscle will not only quickly relax back to its pre-tensed state, but if it is allowed to rest, will become even more relaxed that it was. As this procedure of creating tension and then releasing it is applied to every major muscle group of the body, all of these muscles will become more relaxed than when you started.

“The key to triggering the relaxation response in this manner is to take charge of the voluntary muscles by tensing them and forcing them into a state of relaxation. Once the muscles relax then the other components of the relaxation response will naturally follow. Relaxed muscles require less oxygen so the breathing pattern slows and deepens. The heart does not need to be beating so fast to carry oxygen out to tense muscles. Heart rate and blood pressure decline. The normal blood flow returns to the belly and digestion resumes. The belly is calmed. Hands and feet warm up. Such a series of bodily adaptations all start and fall naturally into place because the voluntary muscles are being directed into a state of relaxation. Soon changes in mood follow, and you become more calm and refreshed.”

We also are teaching our guy to take some ownership for figuring out his needs, and helping with strategies when he starts to feel unhappy.

You may have seen the earlier post, SuperT: How to go from angry to happy, which includes a video he made advising other kids, and where used we emojis as aides.

Recently he made two more videos – encouraging kids to go outside if they are having a bad day.

We are improvising as we go along.  Sometimes it’s easy to forget that we adults have a role in teaching techniques that will help our kids get through these moments.  Sometimes around here we find the days so pressured that we take short-cuts, we feel the weight of it all so heavily that we forget that having fun is also therapeutic.

There’s No Running Away from the Loss Every Adopted Child with FASD Feels

NoRunningBy @FASD_Mum

He was asleep.

I was typing in the dark, listening to the Mozart he puts on when he is seriously ready to sleep (as opposed to the endless Seven Super Girls YouTube videos or the various Little Mix albums he escapes into during the quiet evenings in his bedroom).  I had just been scrolling through Facebook one-handed while rubbing his heels and feet and scratching his calf according to his very specific directions.  He told me he loves me.  I know he loves me.

I knew he loved me earlier that day as he was running away from home too – about 50 meters ahead of me and barefoot.  This was the third time in a week that he ventured out like this, his frustrations breaking the previous boundary of the front door.  This time he went the furthest, storming away, around the corner.  My husband and I were not far behind him, though our minds were travelling years ahead.  We were scared, thinking of all those stories we read about of older kids with FASD who take off – their frustrations running far beyond their reasoning regarding safety.  If we got too close to him, it propelled him further away, so we hung back.

He eventually stopped – a siren and some sudden traffic slowed him down.  I told him to stay where he was so I could help him cross the road safely.  He waited, torn between his instinct for flight and his insecurity.  We finally made contact, and side by side we crossed the road and headed toward home, my husband trailing behind us, ready to help if need be.

That’s when our little one started a new conversation:

“I don’t belong in this family.  I don’t belong here.”

“I want to find the woman whose tummy I was in.  I love her.  I should be with her.”

“She should love me.”

“I belong with her, not you.”

And there it was.  The conversation I knew we would have at some point, even if I was not expecting it at that particular moment when our resilience was low, after all the upheaval, chaos (and fun) of our recent holiday, a visit from overseas relatives, and simmering concerns regarding the upcoming start of school.

“You are right.  She did love you.  But she knew she couldn’t look after you.  She wanted you to have a good home.”

“You always will be a part of this family.  I love you no matter what.”

“I want you to be safe.  I don’t want you to walk away like that.”

“We are a family.  We can solve our problems.”

“It’s okay if sometimes you feel frustrated.  It won’t always be like this.  Someday you’ll be better able to handle how you feel.”

And then ten minutes later, back home, he wanted me to be with him when he was upstairs, when he was outside.  Where ever he was, he wanted me near – the running away was forgotten and my maternal back scratching duties resumed.  This is not unlike the early days, when he wanted me all to himself – biting and kicking at others to be sure I was with him only.  Is it regression? Is it because I am not reassuring him enough?

This other woman, wherever she is, is missing out on a remarkable young being.  It would be easy to be bitter and angry toward her, but I am not.  I feel a great sadness that he has an emptiness inside of him that I will never be able to fill, I would never try to fill.  I wish she had been able to look after herself better, that she had been able to better protect him while he grew inside her womb.  I hate that her alcohol seared its way into his future in ways I doubt she ever understood. I hate that he spent those first days critically ill, fighting alone in this cruel world, abandoned in a hospital, crying without comfort.  Nothing I do or say will ever, ever fill those days, those weeks, those months, that nearly year-and-a-half when a tired and overburdened system did its best – inadequate as it was – to keep him healthy.

During our adoption process, we came across a couple of helpful books that I pulled off of the shelf again after this long day – they are not about FASD, but they reminded me that being adopted is complicated enough, let alone with the added challenges of FASD on top of it all.

“Being Adopted: The Lifelong Search for Self” by David Brodzinky, Marshall Schechter and Robin Marantz Henig focuses on the fact that coming to terms with being adopted has different phases as one goes through various developmental stages.  This book was important to my husband, as he too is adopted.  Looking through this again made me think that while our son knows his adoption story at a basic level, the way he owns that legacy will change as he grows older.  This too will become another challenge of this hormonal decade he is entering (and it will be made more difficult because his emotional comprehension will be that of a child much younger and his ability to absorb it all will be confounded by the hidden disability of FASD).

“Twenty Things Adopted Kids Wish Their Adoptive Parents Knew,” by Sherrie Eldridge, deals head on with the sense of loss that every adopted child carries with them throughout their life.  I skimmed through this book again, to see if I could find some answers for our son’s questions and comments.  What I found was comforting, in a sad sort of way.  I was reminded that some things I cannot change.

“[T]he truth is, the very act of adoption is built upon loss.  For the birth parents, the loss of their biological offspring, the relationship that could have been, a very part of themselves.  For the adoptive parents, the loss of giving birth to a biological child, the child whose face will never mirror theirs. And for the adopted child, the loss of the birth parents, the earliest experience of belonging and acceptance.  To deny adoption loss is to deny the emotional reality of everyone involved….Grief is the natural response to loss, and those touched by adoption must be given permission to revisit emotionally the place of loss, feel the pain, scream the anger, cry the tears, and then allow themselves to be loved by others.” (p. 4-5)

Raising an adopted child with FASD amplifies these challenges immensely, since the underlying brain injury makes abstract concepts harder to understand and emotional triggers are much closer to the surface.  The fact that our 12-year old son was able to voice to me his thoughts about his biological mum in the way that he did is progress.  It doesn’t hurt me, though I did feel a thud in the pit of my stomach.  But I am concerned over how the various dots get connected in his head.

I was struck, skimming back through this book, at another of the points: “I am afraid I was ‘given away’ by my birth mother because I was a bad baby.  I need you to help me dump my toxic shame.”

Toxic shame.  That phrase keeps going over and over in my mind.

The world is confusing and overwhelming for our son.  He knows he is different.  We have started the process over the past years to help him understand his diagnosis.  In the past few pressure-filled weeks he has had some of the most devastating meltdowns he has ever had.  Bewildering for us, they must be so scary to him (even if in the moment he presents as manically triumphant in his wild abandon).

I believe this new urge to walk away is wrapped up in his confusion over his own behaviors and the rage he sometimes feels inside of him.  I know he feels different from others around him – different in his abilities, in his interests, different in his desire to sparkle and shine in a world that wants boys to be flat and blue.  I hate to think he may be unconsciously carrying a  ‘toxic shame’ about who he is and how he acts.

I am oddly comforted to re-read some passages in this book – to skim again what I once thought I understood.  It is important to be reminded that his experience of this world is so entirely different from my own extremely secure childhood.  I sometimes get lulled into our daily routines (even if the days are never ‘routine’, our ‘norm’ has become ‘the norm’).  I forget just how unusual a family life we do have until something (like the recent holiday) makes me shine a light a little more into our life.  We tend to forget that ‘special needs’ are in fact out of the ordinary and there is a very good reason why things are sometimes so difficult, why sometimes the pressures pulling us apart are so great.

It’s good to remember that there are conversations we should have, and will have, again and again as our son begins to grow into the man he will be: deep questions about who he is and where he has come from, discussions that acknowledge his differences and celebrate his considerable talents and wonderful qualities.  Hard conversations, made more complicated as it is difficult to understand how much he understands.

I cannot fix the physical damage his brain has suffered.  I cannot change the way our family came to be.  I cannot force the world to embrace him gently (though I can do all I can to try to make it more pliable as he crashes into his future).  I cannot stop the pain and confusion and hurt he feels but is largely unable to voice.

I can’t do any of that.  But I can love him.

I can create a safe place for him to test boundaries.  I can, with the help of my husband and elder son, build with him a strong family unit that can withstand the forces that push and pull him.  Extended family and friends and professionals can all help buoy us all during these stormy years ahead.

I will not soon forget the moment I saw the defiance in him melt as he stood on that street corner, realizing he went a bit too far – the uncertainty that washed over him.  He shrunk into himself as the world suddenly seemed bigger and more overwhelming than the overconfidence and anger that had driven him to ‘run away.’  He looked so small.  So vulnerable.  I was aching inside.  This time we were there for him.  He let me take his hand and he let me guide flip flops onto his bare feet so he could walk home without pain.

Every time after a rage, after a storm, he looks to see if we are there.  Every time.  Every child needs that security.  Every child.  Most especially adopted kids, and particularly adopted kids who may or may not be fearing another rejection borne out of the ‘toxic shame’ buried inside of them, a fear they are ‘bad’ when really they are little superheroes as our adult friend with FASD, Lee Harvey-Heath says.  I just worry about that day when he might go too far, too fast and I might not be there when he needs help crossing the road or finding his way home.  I know I shouldn’t borrow trouble.  What will be will be.  We can do all that we can do, and we can hope it makes a difference.  This love means something.  This bond will help him in times of need.  I know that, deep inside, I know.  I know he knows too, somewhere deep inside.

Our little guy fell asleep, with me sitting next to him on the bed.  Mozart washed over us both.  It was all so peaceful and close – so far from that chasm I had felt earlier staring across that very wide street.  I sat there in the dark next to him in the bed for another 30 minutes.  I guess I needed that connection and calm reassurance as much as he did.

We all do.


P.S. – This post feels so heavy.  We must never lose sight of the ‘ups’ as we try to understand and minimize the ‘downs’ – here’s a little glimpse into his joy.

 

FASD Parents Have to Suit Up

Suit up.jpgBy @FASD_Mum

I sat by the poolside, torn between admiration and brewing frustration.  We are on holiday and our son finally has the chance to swim to his heart’s content.  It is so deeply satisfying to see his sensory needs finally met.  It turns out all it takes is a large indoor pool, a Jacuzzi, a steam room, and a sauna.  I have spent more time than you might imagine, watching him smiling in that Jacuzzi wondering if we could rig up something like that in our bathtub.  I was thinking of my younger days as a “Jersey Girl” – where summers meant deciding what beach to go to or whose pool you would swim in that day.  I felt a little sad that our guy doesn’t get this full experience in community pools in “The Shire”.

Of course, the magic of it all started to wear off sometime around 5.45 pm.  That was (my admittedly random) designated time for him to get out of the pool.  We had gone back to the pool in the late afternoon.  I had already spent hours in the morning/early afternoon being steamed, bubbled, floated and baked (I loved it all).  But for this second trip back to the pool, I decided not to bring my suit.

Big mistake.

At 5:45 pm, my cherub made clear from the middle of the pool, with many witnesses, that this was way too soon to get out.  He was in fact not yet tired and was having a blast.  I specifically chose not to draw battle lines.  By 6:30 pm I was remembering a time from my childhood when my brother put an eel in the pool – that little thing was super quick to dart to opposite sides of the pool each time he tried to get close to it.  The parallels were remarkable.  My husband had come to the pool at one point, also in street clothes, perplexed at what was taking so long (since we were missing out on dinner).  I sent him back with the instructions if we did not return by 7.15 he should come with his swimsuit.  Above all, I did not want to have a battle in the pool.  We are here for a week.  I want this space to be happy.  It was after all my own mistake for not having my suit.  I wanted this to be a great day for our son.  He had to eventually grow tired, right?  (Wrong.)  I was bored, my phone had run out of charge, and my “I’m cool” façade was cracking.  But I was not going to let this end badly.

The thing was, this was one of those times when people were thinking “what a poorly behaved kid” – and those moments put my back up in a way few things do.  I was trying to be subtle, trying to keep my voice down, but really there is only so much you can hide about the scene when your little dolphin boy heads to the bottom of the pool every time you try to talk to him.  One woman even tried to talk to him to get him to come out (my husband quietly thanked her and explained he has a disability so this was not just the pure disobedience that it seemed to be on surface).

And actually, our son was spectacular.  He was in his element.  He was having a great time.  After he nearly knocked into another kid, that little boy came up to me.  I thought he was going to be cross.  Instead he whispered, “How did he learn to be such a good swimmer?”  By which, I realized he meant, “How did he learn to do those tricks without killing himself?”  So I told him he takes gymnastics, and he is fearless.  The little boy’s eyes were shining, “That’s me as well! I take gymnastics.”  Turns out our son was a bit of a hero in his kid’s eyes for all his one-armed cartwheel dives and flips into the deep end.  Our very literal son had already decided the “no diving” sign did not apply to these moves since he was going in feet first.  I could not find fault with his logic.  And I was also kind of in awe – I had no idea he could do half of those things, though I did draw a line at aerial cartwheels, since even he admitted he has only ever done those on the mats.

Perhaps even six months ago I would have dug in and got my son out of the pool at the agreed time.  I am sure many of you reading this will think I was wrong to let it slide so long.  A few months ago, I might not have realized the beauty of his thinking when I pointed out to him at 7:02 that we had agreed he would get out of the pool at 7:00.  He got a huge smile on his face and said “But it’s not 7:00, that time has passed!” before he swam off and under the surface in triumph. Genius, really, when you think about it.

We are on holiday.  The time that I chose for leaving the pool was arbitrary.  The point of the holiday is to have fun.  He was having fun.  What good would it have done if I dragged him out by one arm or if I had gone in with my dress to haul him out?  The standoff would have a natural conclusion at 8:00 when the pool closed anyway.  How lucky we were that the young woman who worked there agreed to say nicely to him that if he wanted a shower he needed to get out a few minutes before 8:00.  How lucky was I that my sister (on holiday with us) had sent along a pair of new flip-flops “from the piskies” (Cornish fairies) and that my husband was quick thinking saying he could only have the present once he was dressed?

So rather than what might have been a screaming, dripping, kicking battle, at a few minutes past 8:00 he came running out waving his note from the piskies.  Happy.  Joyful.  Tired.  Exhilarated.  I know we can’t always give him such leeway, but tonight it was possible.  Tonight, we put his needs first and we were rewarded with a content and satisfied child.

The day before?  That was another story.  That day did not end well.  That day – perhaps due to tiredness, lack of food, lack of sleep, or all of the above – our son had a meltdown in the garden of the rental house.  He tossed broken toys into the bushes (it’s not clear if the meltdown started because one of these was already broken and not working).  He threw a rock hard at my husband and hit him in the side of his face.  Our relatives who have not yet seen such a meltdown were freaked, but I could not stop to worry about their reaction in the midst of trying to find where our son had gone (not far, as it turns out).  It was a horrible scene.  The gap between what we knew we needed to do and our relatives’ instinctive reaction was huge.  I knew we needed to be quiet and reassuring so we could avoid any further escalation in this strange place with lots of winding paths that our son could easily get lost in.  They thought I was uncaring of my injured husband, when that was far, far from the truth.  They were stunned, scared, and confused to see just how far from “traditional parenting” we have gone.  I realize in retrospect that even for the most informed and caring extended family members, if people are not involved daily in our lives, the struggles can seem alienating, and the worst possible time to try to explain it is in the middle of a crisis when our son’s needs due to his disability must come first, even if we have to mop up hurt feelings for days after.

I found our son just outside the gate, looking at blackberries.  He was uncertain, standing near but fearing our reaction.  He was struggling to gain self-control.  I could see his shoulders were not yet relaxed – we were on razor’s edge.  This could either dissipate or escalate.  I didn’t say anything, just walked him down a wooded path.  He reluctantly let me hold his hand.  I surprised him by showing him flowers that matched my dress (the first thing that came to my mind).  Random enough to shake him back into the moment.  Fragile still, we walked straight home and directly into the bedroom where he finally went to bed.  Apologies to his dad waited for nearly 24 hours.  And that was ok.  My son and I talked it over in the restaurant at lunchtime.  I told him we understand it was hard, with so much that is new (we had only recently moved from the house we stayed for the first week of our holiday to this new place with so much to absorb).  He had assured me, “I am not going to have a meltdown at you Mummy”.  I so much wanted him to be able to keep that promise.  That is why I sat by that pool for an extra two hours.

The holiday has been not easy, but not impossible.  The first day it nearly ended before it really began.  Our drive that was supposed to take four hours took nine (in part due to traffic, in part due to the fact we simply could not travel with our son as dysregulated as he was).  That day was perhaps the worst we have ever had – a full blown public meltdown in a roadside café with picnic tables surrounded by tiny stones that were oh-so-easy to scoop up and throw.  We were all a little stunned and sad.  I was wondering if I would need to take him home on a train.  But we picked ourselves up and continued.  As usual, the benefits outweigh the hard parts.  We suppress our sadness that he finds it all so difficult, because we see he also feels great joy in these new experiences.  Watching him conjuring the waves is the stuff of lifelong memories.  He runs into the water up to his waist, stands defiant in the face of the sea, and like a conductor motions for the waves to rise and fall, giggling when the waves inevitably win as he cartwheels away from them.

Suddenly the summer seems too short. These opportunities seem too few and far between.  It has been so nice to see our son (relatively) unstressed now that he is not gearing himself up for school every day.  I dread having to shop for school uniforms in two short weeks.  I don’t want to see the tension creep back into his now suntanned little body.

So, seriously, if he wants to swim a while longer, why not?  OK, sure, next time, I will be ready.  Parenting a child with FASD demands we suit up and remain prepared for all sorts of unanticipated situations – including those moments of joy that present themselves if only we are flexible enough to allow them to unfold and proactive enough to tuck away their sweet memories for those hard days that also will come.  Carefully, slowly, we sweep away the negatives – not through denial but through choice – and prepare the foundation of positives upon which he can build his life.

The Coming Summer Holidays Cause Anxiety For Our Son With FASD

We love a child with #FASD-7By @FASD_Mum

“Mummy, I can’t stop my body.”

In that gutted pause that comes after a loss of control, our 11-year old son found the words to tell me his truth.

“It doesn’t work right.  I want a potion to give me superpowers.”

This was after I prised from him the tablet clutched to his chest and saw that the screen was shattered.  He had pounded it in frustration because he could not make the volume go loud enough.  Instantly remorseful, he had been sitting there in dread, trying to problem-solve.  “There’s a place on the High Street with a sign that says ‘tablet repairs’ Mummy. They can fix it.”

We have educated ourselves enough about FASD to know yelling and punishment are the last things that would help him in this moment to learn the lessons he still needs to learn.  I was tired, defeated, but my child needed the best of me.  “I know it’s hard for you when you are frustrated.  It won’t always be like this.  When you get a bit older you will be better at controlling your frustration. I love you.”

Trying to think of ways to get to ‘yes’ before this spiraled into a full meltdown:  “You are frustrated aren’t you?”  Nods.  I moved the tablet out of arms reach, lest it become a projectile.  “It’s been hard lately, hasn’t it?”  More nods.  We moved to the couch.  He was curled up into himself, while wanting me to scratch his legs, rub his feet.

“You’ve been sad lately, haven’t you?”  That’s when the tear appeared in the corner of his eye.  The tear that made me choke back my own sadness. These silent tears are rare and heart-wrenching.  They speak volumes more than the more common full-on screaming tirades.  This poor child is trying so hard.  The end of the school year is too much for our son.  July has never been a good time in our house.

Every bake sale, non-uniform day, sponsored walk, community outreach activity…every special assembly, film day, school fete, disco and concert triggers anxiety over the uncertainty of expectations and timing.  For our son, it leads to strings of negative or oppositional instincts that can leave us all bewildered, shell-shocked, and trying to figure out how to reapply doors to hinges, literally.

For all the positive “you’ve tried hards” there is no sugar-coating the reality that end-of-year reports lead to disappointment and confusion.  A little more air escapes from his balloon just as he is trying to wrap his head around the fact that he will have new teachers and new subjects in the autumn.

In every conceivable way that he can, he has told us over and over again in recent weeks that he is on overload.  He has refused to go to school, to beloved extra-curricular events.  He tells us he is tired, his tummy hurts.  He is having digestive problems.  He tells us again and again he just wants to stay home.  He regresses.   He gets caught in the loop of perseverative behaviours – playing for hours with water in our garden, sneaking all the baking soda and baking powder and whisks to make potions – until something throws him over the edge into a meltdown.  If we try to redirect, he melts down sooner.  He wants to have independence, to determine what he does.  But it almost always ends with something that didn’t go just as he wanted it to.  And then we have blast off.

So we chat with the doctor.  We discuss re-jigging medicines again.  Brainstorm about possible other referrals.  The team around this child are growing concerned.  We can see it in their eyes.  We know they are looking at us with deepening worry.  Our veneer is scratched and frayed.  We can’t even pretend any longer.  We all know puberty is crashing down our our not-so-little guy.  We need to deal with his anxieties, give him the skills to be able to withstand these many pressures he feels.  We need to find ways to buoy him up when he feels like he is getting smashed by wave after wave of intimidating situations.

A psychiatric referral.  Tests to see if he has some sort of infection, to see if he needs growth hormone since he has gained no weight in more than six months while finally growing a bit taller.  X-rays scheduled to see if there is anything we can do to make the thumb on his right hand work (FASD affects more than the brain, he also has some fused vertebrae).

Each new step forward requires even more logistical juggling.  It’s welcome, but it’s more, always more, pressing down on us all.  I vented to my husband, maybe cruelly in the middle of a moment, “Prepare yourself.  It’s going to get worse, a hundred times worse before this gets better.”  The look in his eyes made me think I had slapped him.  But the reality is, I don’t think that’s an exaggeration.  We somehow have got to get through these teenage years with our son’s self-esteem intact.  And it is going to be hard.  Hard for him.  Hard for us.  Hard for his brother.  Hard for those around us, watching, wanting to help but not knowing how.

Our son most certainly does not have a carefree childhood, if that even exists anymore.  For him, this summer will not be the end-of-year locker-slamming, running-toward-the-freedom release I once knew.  For him it is a time of anxiety and uncertainty: unstructured time is no gift to our youngest.

And of course, in our recent daily survival mode, we haven’t fully sorted the coming holiday.  So we add another thing to list that we beat ourselves up about.  Deer in headlights, we see the summer holiday bearing down on us and make frantic calls for summer camps, urgently fill out forms to register him with various special needs databases and not unsurprisingly find out way too late about deadlines missed.  More emails.  More calls.  Clutching at straws.  We find one day-camp that looks great, they even have a Special Needs Coordinator.  We gently raise the idea with him.  He didn’t say no.  We wonder if we are going to lose a lot of money if we sign him up and he then refuses to go.

And the cherry on the top?  The last day of school coincides with his birthday, which is an event to him on par with or exceeding Christmas. The disappointment will come when he does not get everything he has requested for months on end. (The list would bankrupt Richard Branson). This year we are going to use the day to satisfy his sensory curiosity.  We are going to have a ‘no-manners dinner’ – an idea stolen from my niece.  We are going to have an “eat it or wear it” challenge per his instructions.  We are going to try to make it messy and memorable and pray it is as fun as he thinks it will be – but we dread it, are prepared for it to all crash down.  We have learned with this son that we cannot be rainmakers.  No matter how delicious the food I cook, and how many times he has liked it before, I am always ready for the instantaneous rejection that I try ever so hard to not take personally.  Birthdays, holidays, we are always on-guard.  We know for him the mundane is the true gift.  Which doesn’t mean he doesn’t want more.  Much, much more.

“Mummy, I don’t want to be 12.  I want to be 10.”

This is a child who sees things changing, who feels the differences more the older he becomes.  We can’t change what will be.  All we can do is shower him with our love – unconditional even-when-you-break-electronics love.

So here we go, the last week of school before the break.  Of course England has decided to hit the upper 30s (90s in Fahrenheit) this week, making the school an oven and adding yet more sensory challenges.  After we spent 30+ minutes coaxing him and gently trying to ease him out the door despite his refusal, and successfully avoid a meltdown, we work out a deal where his TA will help him plan the shopping list for the no-manners dinner.  We gird ourselves for the ups and downs of this week, the week we know we will look back on with envy once we get into the heart of this coming summer madness.

Even if it is not the best-timed birthday, he does after all need a new tablet.  The new one will have a rugged cover and a free replacement warranty.  We do learn.  Slowly.  By the time he is grown up, we may just have figured things out.

 

SuperT – How to Go From Angry to Happy

We love a child with #FASD-6

By FASD_Mum and SuperT

We have been given advice by a professional to help give our son more ownership over decisions on how to regulate himself and how to get through the day.  We have chosen to use emojis as a prop for this.  We are using them to help him identify his feelings, and then to agree to things he can do when he is feeling a certain way.

Today, we worked on how to go from angry to happy.  Here he is, in his own words:

We sat together and discussed the many emojis on his new duvet cover and his new pillows.

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Then we talked about the two he called “Most Angry” and “Angry” and what he could do to get back to happy when he feels this way.  This way, he has some initial buy-in when things start to get challenging.  This is not to say the process of getting from angry to happy is immediate – far from it.  But we are able to show we are on the same side in those moments sliding into dysregulation.

Tonight, as things started to fly I was able to say, “I see you are angry.  Remember we have a plan? Remember our list?  What’s first on the list….”  Within 10 minutes I was able to walk him upstairs and into his calm spot, where he then re-watched his video above.

Things calmed down.  It was a win.

It’s not perfect.  We’re rookies.  But it’s a start.

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