Seeing What is Not Seen in the SEND Debate: FASD

Blog SENDMarch

By SB_FASD

On 30 May children and families took to the streets in cities across England to fight for more funding for special educational needs and disabilities (SEND). Petitions were delivered to centres of decision-making. Twitter lit up with the hashtag #SENDNationalCrisis.

In a powerful piece in The Sun, Chair of the Select Committee on Education in the House of Commons Rob Halfon, MP wrote that: “No fewer than 78 per cent of permanent exclusions are issued to those with special educational needs, with 4,000 special needs students being excluded every week.” In another piece it was stated that “According to the NEU teaching union, special needs provision in England has lost out on £1.2 billion since 2015.” It’s a crisis all right.

The reality behind these figures was laid bare in a tweet by @Dyspraxialife: “It’s easy to show compassion for a child who is struggling. They have innocence, purity, vulnerability and the cute-factor. I wonder how many homeless people who get walked past every single day were once struggling children. Instead of love, they now get spat at and demonized.” This isn’t about ‘others’ – it’s about the health of our communities, the kind of society we hope to be, the smart use of limited resources. It’s about political will and choices.

So why do I feel like the air has been knocked out of me?

I see what is not seen, the “pink elephant” in the room as some advocates have started to call it: FASD. Foetal Alcohol Spectrum Disorders.

The best study to date in the UK says more than 6% may be affected by FASD, organic brain damage resulting from exposure to alcohol in the womb. FASD has been called a ‘hidden epidemic’. Statistically it affects more people than autism.

As I scroll through videos from the marches, I hear clusters of diagnoses and symptoms that match a pattern not uncommon among those with FASD: ADHD, ASD, OCD, hypermobility, dyspraxia, etc. I hear parents discussing exclusions from schools due to meltdowns that schools cannot handle.

I fear there are many missing the vital insight needed to put in place appropriate supports for their loved one, a diagnosis of FASD. FASD is a full body diagnosis, more than 400 conditions co-occur. Alternative strategies are needed at home and in school. Kids with FASD are often punished and excluded for behaviours that result from cognitive processing and sensory issues that contribute to a lack of impulse control, an inability to consistently remember what has previously been understood or to link cause and effect. Transitions are hard. The dysmaturity involved means everyone around the young person needs to adapt expectations and change the environment to give that person their best chance to succeed. Without lifelong support, the statistics for people with FASD are truly grim. Homelessness is just one of the possible outcomes.

There is great stigma at play here, fueled by a devastating lack of understanding. To even raise FASD in many parent-advocate or professional forums can bring a barrage of negatives based on the old-school shaming-blaming ethos. But we can frame the discussions differently. As outlined by the late Pip Williams, founder of the UK and EU Birth Mothers Network-FASD, the reasons why women drink in pregnancy are complex. Many pregnancies are unplanned. Most women don’t have the information about the risks of alcohol in pregnancy. Very often pregnant women are not drinking alone. For those who need help quitting, support services are severely lacking.

To help confront this stigma, my husband, son and I marched yesterday carrying huge brightly coloured signs made by the wonderful young people in the E. Herts and Area FASD Club that simply said “FASD” on them, wearing hats that said, “Ask me about FASD.”

One person who did ask was a recently retired Special Educational Needs Coordinator who had worked in two different schools. She didn’t know what FASD was. As she thought more about it, she said she had one child once who had Foetal Alcohol Syndrome (this refers to the 1/10 of those on the FASD spectrum who have certain facial features). A career SENCO would have had many, many students with FASD under her charge. Her question shows the vital importance of increased training on FASD at the frontline of SEND services. People don’t know what they don’t know.

We lasted at the march as long as we could. But there are no pictures of our signs out there in the news reports. To be fair, we left early. Our son with FASD was overwhelmed by the sensory input – the shouting, the whistles, the heat, the stop and go. Cognitively he was overwhelmed, unfamiliar with the march route, his anxieties soared. We didn’t even make it to the centre of the town, but we peeled off from the others, called it a success and came home. That’s the reality of life in our family. And the very many other families who were unable to be out there yesterday.

The tragedy of this absence from the debate is what has knocked the wind out of me. We know that early diagnosis and appropriate support create happier families and brighter futures for those with FASD.

And yet, even on a day when the streets are full of those with special educational needs and disabilities, our kids are still not part of the picture.

But I won’t stay down for long. I know change is coming. In England next year there will be a new NICE Quality Standard on FASD. Soon the health care system will be held accountable to improvements in services for those with FASD. The educational field too will have to wake up to FASD.

There will be no lasting solution to this SEND crisis unless and until FASD is a part of the picture.

Clearing Shelves Stacked with Someone Else’s Dreams

Blog_CleaningRoom2

By SB_FASD

Oh sweet child, today you asked to clear out your room. You have been saying for weeks that you wanted to do this. I kept finding excuses. I didn’t want to face what I knew was coming. But you dove into the project. Knowing how this sort of task can easily overwhelm you, I calmly said I’d help, even though it was early and I was tired, un-caffeinated and unconvinced.

And soon there we were, knee deep in the tomorrows I had thought you’d have as you swept away my earlier visions of the way your future might unfold. The future I was creating for you in my mind, before we understood your FASD.

“You bought me too many books.” Yes, I suppose we did. I said, “I know, but we used to read them together.” You replied, “I don’t like books with too many chapters, too many words.” I know that now. You suggested we could get more workbooks. You wanted to keep exercise books. “I have too many copies of ‘Alice in Wonderland,’” you said. Because, my son, at one time you were completely and utterly engrossed in Alice, you fixated on the fantasy world. We watched movies. We read books. We watched an Alice ballet. But okay, now I see you are ready to move on.

“These books are baby-ish,” you said, sweeping away the books about bugs, about colds, about how children lived in Anglo-Saxon days. The books with pictures that we spent hours looking at, making up stories when reading was too hard. The kids’ joke books you loved but never really ‘got’. This isn’t the first time we have culled these shelves. Some of these books are ones we thought might give you some important info in a more accessible way. But you’re right. They are for much younger kids.

Some books stayed – Spy Kids, all the playbills from the many plays you have seen, a collection of the later Biff and Chip books, the Diary of a Wimpy Kid series. And of course Amelia Bedelia. She is so literal and she tries so very hard, just like you. You still laugh when she gets herself into a pickle every time.

We understood at a point that you do better with chunks of information, accompanied by visuals. So we have a large collection of DK Eyewitness Books that you and your brother used to page through – covering everything from the weather to history to the Titanic (that one you kept).

Book by book, I had to bite back my regrets. All those Dr Suess books that I adore but that I know now must have completely confused you with their nonsense words and silly pictures. I held in my arms some of the great children’s literature I loved as a child, trying to decide if I am ready to let go of my dreams of reading these with you, knowing I must.

And the toys and games. “I hate puzzles.” I flashed back to so many times we tried to do puzzles with you as a young child. You would get so frustrated. You had to try the piece every which way until it eventually fit. Even if it was a triangle into a square hole. You kept at it, determined. You did eventually get there. I had no idea then how your brain struggles to think abstractly. That practical trial-and-error approach was you trying your absolute hardest. A reminder for me of the way you learn best – hands on, experientially. I stared at the newer 120- and 200- piece puzzles, agreeing we could get rid of those now.

Today you were prioritising you. Rightly so.

I am proud of you. It can’t have been easy to move me into action. I am sorry it had to take such sheer determination on your part. I should have been listening more closely.

But I would be lying if it didn’t admit that I spent the day grieving in a way I haven’t done in a long time. I spent the day missing those earlier years when it was easier to get you to do what I thought was best. I spent the day second guessing myself, as I accepted again that I don’t always know best. You have always shown me what you need. How hard it is sometimes to listen.

We say it all the time, that young people with FASD are often socially and emotionally half of their chronological age: “stage, not age.” But these teenage years are tricky. That ‘rule’ doesn’t apply evenly and it’s not consistent. It’s dependent on lots of things. In a day you can go from being quite surprisingly mature to acting like a much, much younger child. Sometimes your insights catch my breath. Other times, I feel fear when I have to repeat something very basic that I know you once knew. I really don’t know everything that you need these days. You are a glorious mix.

You are all about music, electronics. You have taken on board the idea that sensory items help you, so we kept a shelf free for the slime. Today, in a new toy store full of toys, you chose a sensory bed tent. It has a light inside. And a unicorn on the outside. You still want us to create a stage in your room with curtains that open and close with a string. We will try. I am not convinced you really wanted to get rid of the dreamcatcher and the emoji pillows. I was surprised you asked for us to bring the Lego back in your room. Then I grew worried as storm clouds gathered when you wanted to recreate a Lego schoolhouse that you long ago smashed apart. The pieces are mixed in with thousands of other Lego pieces now, making it unlikely we can recreate that model.

So, where is all of this going?

When we first started pulling apart your room, my original plan was to put those DK Eyewitness Books on a bookshelf in another room. But I have been staring at them long and hard. When you want to know something, you google it. You learn from YouTube videos. This is a real strength you have, your ability to navigate online. You are not ever going to go to those books for information. I get that. I have to let them go.

I have to let it all go.

I love you so very much. I know these things mean nothing in the long run. You are doing so very well, as you learn to understand your body and your sensory needs, as you show us your strengths that come from having a mind that works differently.

You have a rack full of sparkly dress up clothes. You love performing.  Your Christmas list is full of special lights, music and technology. Your dreams are in some ways larger than life. But who among us dares to limit you? You are so talented, who knows where they may lead? So, yes, I will sweep clear those shelves so you have room for disco lights and microphones and amplifiers and speakers.

I promise I will try to remember that in your 14-year old body is a unique and growing young soul that needs to feel comfort and nourishment in the items that surround him, whose room should not be a place where he looks around and feels inadequacy in failing to meet someone else’s vision.

It had never occurred to me that you saw those things in your room as my failure to understand you and what you really like.

Dear amazing you, thank you once again for teaching me what I needed to learn.

(Now, how do we get rid of all of this stuff out of our bedroom, where it landed throughout the day, leaving me with no path to walk?)

FASD: Rethinking ‘Learned Helplessness’ & Empowerment

learnedhelplessness

By SB_FASD

“Learned Helplessness” – this phrase was bounced around in a meeting with the school recently. I keep going over and over it in my mind. When I first saw it on a paper, I recoiled. When it was being discussed I felt defensiveness and anger bubbling up inside me. I had to keep looking to my husband to see how he was reacting. As a school governor, he knows how to wade through the lingo. But this one was new to both of us, and it did not sit well.

Here’s why.

There remains a prejudice – even in progressive places, even among the most supportive of people – against the idea of encouraging a person to acknowledge and seek support for tasks that others can manage. A look of horror shadows across someone’s face when we try to explain that FASD is a lifelong condition, that our son will always need scaffolding and support. The defensiveness I feel is that they are questioning me as a parent, thinking that I am ‘babying’ my growing teen, denying his independence, not preparing him for the hard, cruel world.

Oh, how wrong that is.

In seeking to help our son identify when he is overwhelmed, in giving our son the words to describe his need for people to break down their instructions, in providing our son technologies and strategies that allow him to remember and complete multi-step projects, in helping him understand those things that overwhelm him and in explaining why his brain finds certain things quite difficult, we are giving him the very tools he needs for his future independence.

Forcing him to write by hand something he can easily type is not overcoming learned helplessness. Giving him technology to unlock his thoughts is showing him how he can communicate all that is inside of him.

Giving him support to organise himself and what he needs to carry from lesson to lesson is not selling short his abilities, it is removing a needless stress – allowing him to focus on the other more important things rather than using all his mental energy for that purpose.

Helping him get dressed for school in the morning is not over-parenting him, it is creating an environment where he feels less anxiety allowing him to make the major transition of the day with as little stress as possible. (And no, don’t worry, I do not intend to be helping him to get dressed when he is 20.)

Yes, I do understand that water finds the path of least resistance and so do children. Sometimes. I do understand that making things too easy can become a self-fulfilling prophecy. No one is advocating under-estimating the considerable talents of my child, or any child.

In fact, I have sat in meeting room after meeting room in school after school and office after office doing exactly the opposite – showing teachers and professionals that they are the ones underestimating our incredible son’s abilities. Understanding how his brain works, suggesting the supports he needs to overcome the challenges he faces as a result of his brain wiring, this is not making excuses – this is providing insight and explanation for how to help him be all that he can be.

You may balk at the idea that a grown person will need to take motion breaks, to find some way to get deep proprioceptive impact regularly throughout the day to help himself stay self-regulated. You may think that ‘he has to get on in society,’ and that he has to ‘fit in’. That he needs to ‘learn’ to not need these sorts of breaks. But you would be wrong. There are ways as he grows older that he can meet this need without having to crawl into a ball pit. But if there is one available, and if he asks to go to it and is denied, then it is not me making him feel ‘less than’. Together we can find other ways for him to get this needed input as he grows. We have been teaching him since before he could talk to squeeze his fingers slowly, to squeeze my hand when we are in a crowd and I will squeeze it back (our secret signal, we squeeze out the syllables for ‘I love you’ in a way nobody notices). He will learn other ways as he grows older, but the answer is not for him to learn to just sit still. That will never be his answer. We have done star jumps in crowded hospital waiting rooms. Would you rather he sit there in distress until he can no longer handle the stress and have a meltdown? Who cares if this is not the ‘done’ thing. Maybe the world needs more ball pits and star jumps for us all.

This really isn’t about one school report. It’s not directed at any one individual. My strong negative reaction to seeing that phrase there in black and white is the result of a much, much wider frustration.

People out there need to understand that Foetal Alcohol Spectrum Disorders are lifelong. Practice and repetition helps. It is highly probable and desirable that with enough consistency some things that today need significant scaffolding might in a few years’ time be do-able by rote.  That is the goal, the vision. Strategies we practice and discuss time and time again will become second nature. We have already seen this happen, seeds of strategies planted years ago are starting to bloom. Every lesson is being processed inside that amazing and complex brain of his – but we all of us need to measure ‘success’ in a different way, on a different time scale.

And – this is essential – we should not remove those supports once he is doing well.  No,  that is just cruel. That is setting him up for failure. The supports, when they work, need to be there on a daily basis, consistently.  He’ll let us know when and if he can go to the next level.

Too often we get into a pattern of crisis, supports, end of crisis, removal of supports, crisis looms again.  That cycle is because those around him – despite lots of training in other conditions – still fundamentally do not understand FASD. This happens also in homes and other settings. Things start to improve so we lighten up a bit and voila, things unravel again. The supports are not temporary. They are needed permanently.

You would not remove a hearing aid just because the person started to hear better.

In reading definitions of learned helplessness while still chewing (choking?) on the phrase last night, it occurred to me those who think this is happening are getting it backwards.

“Learned helplessness” occurs when a person figures that there is no point trying to avoid or change something negative because efforts to change it have failed in the past.  The danger of our son learning helplessness comes when he asks for a sensory break and is denied.  When he starts to believe there is no point in telling the adults around him he is struggling because they won’t change the environment.  It comes when he gives up trying to find the words to explain why this project, that assignment, that topic or this particular journey is too difficult for him to wrap his head around in the way it is being presented, to hard to endure because of overwhelming sensory input.

People with FASD should not have to learn to ‘grin and bear it’. They should not have to spend all their emotional and cognitive energy trying to contain themselves, to perform one limited task. It should never be about writing one sentence when there are supports available to help them write in paragraphs. What’s the goal? We don’t want a child to use every ounce of their energy trying to remember their PE kit or trying to sit still for the next 30 minutes. We want them to contemplate the cosmos, to study the beauty, colour and rhythms in the world around them. We want them to open their thoughts to the magnificence of this mysterious planet, to learn about great lives and small wonders. We want to hear their voices, really, truly hear the songs their souls are singing. To do that, those of us supporting individuals with FASD need to think very carefully about what we are doing to unlock their potential and worry less about how to tame them to conform.

No, my child is not learning helplessness.

He is becoming empowered.

Just watch this space.

You’ll see.

 

 

Slime, Enchantment and FASD

Blog Slime

By SB_FASD

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The boy made slime.

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

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

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

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

“I AM a scientist!”

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

The words hung there in the night.

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

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

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

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

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

But they learned, and it helped.

 

 

The Same Child Shines When Seen Through a Different Prism

 

Blog_DifferentPrismBy SB_FASD

We’ve said it before, our guy seems to learn in leaps.  It’s never a steady upward curve for him.  He plateaus and then without any seeming rhyme or reason to it, he jumps up to the next level.  Each time this happens, he falls back in other areas.  Perhaps foolishly, each time it happens, we allow ourselves to be hit hard by the regression.

We are in one of those times.  Our home environment is suffering.  Our pre-teen son is increasingly armed with new vocabulary and new attitude, fueled by a new edginess in what he is watching on YouTube.  Social pressures at school are causing him great distress.  He is getting less physical activity now that he is at a new school.  His walks to and from school and his after school activities have been replaced with time spent in a taxi.  He is out of the house and ‘on’ from 8:00 am until 4:00 pm.  It’s a long day for anyone, and especially for him.

When I snuck away to write this blog, I was feeling down.  I was thinking of the rough morning we just had (diverted eventually by a walk along a river). I was still smarting from the rough night we had last night (diverted only by nearly two hours in a pool) and the string of other rough nights and rough mornings we have had lately.  I was thinking of the harsh words between my husband and I, and the dismayed look on our elder son’s face as the tensions mounted.  Again.  The way the dog sometimes gets wide-eyed.  The mess of the house.  Work stresses.  The fact that this morning we rushed out of the house after a meltdown, in survival mode, and I haven’t had a shower.  Again.  How even the bacon sandwich I allowed myself as a ‘treat’ from a café while we were wandering was disappointing and flat tasting.  Yes, when I started writing I wasn’t in a great mood.

Then I remembered that a school report arrived yesterday.  I stepped away from the computer to have a read.  Page by page, my mood lightened.  I was stunned at my own inability to understand what I know.  Yes!  It hit me.  Our son may be regressing at home, but at school he is progressing in leaps and bounds.  These things are never unrelated. Once again, I am amazed at the difference it is making now that he is in a specialist setting.

Last year at the end of the year we wrote about how we were so crushed by our son’s report card, we never let him see it.  In contrast, this time I called him onto the bed where I was writing.  I told him I had his school report and wanted to show him.  He groaned and visibly moved away from me, alarmed and ready to bolt.  I put my hand on his back and said, “No, wait – it’s excellent.  Listen.”  He looked up into my eyes, searching.  And we skimmed his in-depth report together.  He became more and more interactive, more excited.  After one especially positive comment, he whispered with utmost pride, “Maybe I should get a new toy!”  (Proving that at least in some cases he can link some cause and some effect and also showing perhaps not flatteringly that as parents we have not been above pure bribery in the past.)

In a school that understands not all kids’ brains are wired the same, here’s what these new teachers wrote:

  • “He’s an eager and enthusiastic pupil”
  • “He has great ideas”
  • “He is not at all afraid of thinking outside of the box”
  • “His work benefits from his imagination”
  • “He makes his presence felt with his enthusiasm”
  • “He is keen to achieve good results”
  • “He is gaining greater confidence”
  • “He is a talented musician”
  • “He has an ability to create exciting and engaging musical performances”
  • “Polite”
  • “Very able”
  • “His attitude toward learning has been excellent”
  • “His confidence has improved”
  • “He has managed to express his colourful personality”
  • “I am delighted to have a pupil of such creativity and imagination at the school”

Let’s get this straight.  This is the same child who last year was chided in his report for “disruptive behaviour,” for being “silly” and “distracting.” The discouraged boy who was told he “needed to understand” his behaviour was “inappropriate.”  Who was marked down because he couldn’t pay attention for “more than five minutes.”  The kid who we couldn’t get out the door to school because he was under so much pressure we thought we had broken his spirit–this was happening as recently as five months ago.  He’s the same kid.

I was especially struck by the comment on his current report from a science teacher.  Last year, his science teacher commented on his final report that he repeatedly cried throughout the year when given instructions.  Her reports were never positive, she saw only a problem student.  Cue to this year, and here we are: “He has worked hard in science lessons. He generally grasps new concepts quite quickly and enjoys the opportunities to work practically.  He observes scientific experiences carefully…He follows instructions well and can work in a careful, systematic manner.”

THIS IS THE SAME CHILD.

I want to rattle some teachers.  I know, I know all about the pressures you are under.  But shame on you if you have a child in your class that has a disability and you refuse to learn about how to help that child, you turn away offers from parents who seek to help you understand, who offer to work in partnership with you to help you reach that student.  We hear about it all the time.  Those few of you who refuse to grow professionally are suffocating the spirit of our kids who need you most.  (There were many heroes in his mainstream education, but there were also a few who were truly deplorable.)

He was so proud, so very proud of this new report.  He put his head on my shoulder, squeezed hard, while remembering to ask if it was my sore arm.  (These moments of blatant awareness of others are still few and far enough between that they jump out at me.  I was touched that in this moment of triumph he was also then able to think about me. I am sure there is a link).

We also talked about some of the comments that show his FASD is still affecting his ability to access education fully.  He is starting to know these are areas where he always will have difficulty due to his FASD, areas where he will need to put strategies in place.  When he read the bit about how he “can easily become distracted and lose focus,” he said, “that happens sometimes, doesn’t it?” We acknowledged but brushed over the comments that “he has yet to grasp cause and effect” and “he must ensure he always listens carefully to an instruction so he knows what is expected of him.” We will continue to work with him to understand his FASD and also with his school to ensure they understand these challenges are not due to willful disobedience, but because he will always, for life, need instructions broken down – preferably shown in a visual format, maybe even rehearsed. Whereas previously these sorts of comments dominated his reports, this time, these comments were decidedly in the minority.

The most touching moment was when he asked me to explain this comment, the one that made my mood brighten most: “He needs to believe in himself because he already has gained the respect of many of his peers.”  We went over that together, slowly. As its meaning sunk in, he glowed and I basked in this new space.  He’s made great leaps forward.

It doesn’t mean what’s happening at home is not real, not concerning, not demanding attention and strategies.  (Of course, when things are flying and getting broken we must hear what those behaviours are saying and make necessary changes.)  A positive report doesn’t make his social challenges any less difficult (he told me heartbreakingly the other day he will “never be happy again” because he is “bullied every day, every year”).  But seeing this report does help me believe that those educators around him can help him get past that hurdle too.  He may be having trouble with one or two kids, but he also is “earning the respect of many.”  Can you imagine how wonderful that is for a kid who has been shoved aside, jollied or sidelined by too many of his peers throughout too much of his education up to this point?  Yes.  We are on a whole new level.  Somehow, I have been letting down my guard and letting negative thoughts in.  I have been forgetting that with great progress comes some setbacks in other areas.

Remembering that makes it all a bit easier.

At least, it should.

I’m trying.

————
P.S. – To top off the transformation of my mood, I just read this most fantastic piece by Dr. Nathan Ory, “What It’s Like to Live With Fetal Alcohol Spectrum Disorder.”  I hope everyone will take a chance to read and absorb his insights.  Share it with the schools.  He sums up in one paragraph why I think our guy is doing so well in his new setting (and it’s a timely and important reminder to us at home to keep smiling even through the hard times):

Children growing up with these types of differences in their thinking and learning processes often become very emotionally fragile. They don’t “get” why people are distressed with them. They experience that others are distressed with them and often mirror or reflect back the very emotion that is being shown towards them. For these children, it is very important to really like them when you are speaking to them. They work more off the emotions of those around them than the words and actions of those who are guiding them. Being emotionally angry towards them always further escalates their behavior….These are not bad kids. Often they are working heroically to overcome their learning disabilities and to participate in the world wherever they are able.

 

When a School Rocks

SchoolRocksBy SB_FASD

They cheered each other as each new car arrived with another student.  They were wearing their production hoodies and shirts and school uniforms.  They were buzzing with positive energy – ready for their third performance of the day.  Not nervous, buoyed.  Several kids were introducing our son to their parents.  Some of his new friends broke into huge smiles when they saw us and one gave me a big hug.  The spirit was high.  I was expecting nerves, uncertainties.  But instead this place was alight with confidence and a sense of fun and accomplishment.  These kids were in a good place.  Soon they would be onstage, but in these early moments before the curtain was raised, they were already a team.

Our family has extensive experience with theatre.  The lead up to this night was every bit as intensive a schedule as for a semi-professional or major amateur theatre group.  Before they got to this place, hours of expert direction and guidance took place.  Even before they started rehearsals, these kids were being prepared for their moment.  And that is the thing that brings me to tears every time I think about, sappy soul that I am (or that I am becoming).  The whole school experience for these kids makes nights like this possible.

I don’t know all of their stories, I just know our son’s story.

Our son has always loved music, performing. He’s kind of awesome at it.  He’s now in Year 8.  He attended mainstream school until last November.  In his school’s end of year production in Year 6, he was given I think three words to say, and was placed behind a taller child where no one could see him.  In Year 7 at the secondary school, he eagerly attended the rehearsals for Oliver (he knows every word of the songs) but he had to drop out because the school was not set up to support him through the rehearsals and he was getting into trouble.  Only a few months after he was close to rock bottom having nearly been crushed by the pressures of his old mainstream school, here in this specialist environment, with this team of educators who understand his needs (he has a diagnosis of Foetal Alcohol Syndrome) and have the resources to support him, not only was he onstage but he was in a main role, with more lines than I thought he could manage, and singing his heart out.  And his teacher was literally #intheband!

And as I watched this theatre full of amazing students I was multiplying in my mind his story by her story by their stories, and the full impact of what was happening left me humbled.

THIS IS HOW IT SHOULD BE FOR EVERY CHILD, EVERYWHERE.

There they were, these brave, hard working kids, singing their truth:

I’ve got so much to say,
If only you would listen.
I’ve tried ev’ry which way,
And still you never listen.
Can’t you see I’m hurting?
I couldn’t be more clear.
But I promise,
One day I’ll make you hear.

You know I try, try, try to explain–
I’m not the kid you want me to be.
And yet it’s all, it’s all in vain–
You just don’t want to see the real me.
You think you know what I’m all about–
And yet you just keep shutting me out!

I’ve got so much to share,
If only you would listen.
You could prove that you care,
If only you would listen.
I’m not gonna beg you–
You’ll never see a tear.
But I promise, one day, I’ll make you hear.
(Lyrics, from If Only You Would Listen)

We had a young friend with us, a child who attends our son’s old school.  She said she wished could go to this school too.  She didn’t see anything other than a cool school, with students who were having a great experience.

We were told by the head teacher that while any school should be happy to have a student like our son, this place is perfect for him because he is so very comfortable being who he is.  I wrote about this in the last post, but I just can’t say enough how life-changing it is as a parent to know that your child is in a place that welcomes him, appreciates him, and wants him to be there.

Those words hold power.

They hold the power to change trajectories, to forge positive futures.

I am not saying this performance was smooth throughout.  There were microphones that didn’t work, lines that took prompting.  But what I loved most of all was imagining our son one day being like the lead actor – a talented young man who captivated us all last night – helping another young student like our son remember his lines some day.

More than the cheering each other upon arrival (which was truly awesome), I was deeply, deeply impressed by the way these students guided each other.

That is what this school is teaching.

And there they were!  Some kids for whom even standing up in front of a room full of 120+ people would be a potentially crippling thought…some students who in other places would be mocked or sidelined or silenced – shoved to the back of the room, put into a side room or perhaps even excluded at times…some young adults who have overcome more than most of us will ever have to face…there they were.  Shining.

During the curtain call, when the cast and crew were all onstage dancing and laughing and giving themselves high fives, we saw our son for the first time with his tribe.  These kids weren’t patronizing him, these kids weren’t including him because they were told to, these kids were standing by him, with him.  Together, they made us hear.

AND, they had a confetti cannon.  You have no idea how much it means to our son to be on a stage with a confetti cannon, hearing the applause.

This school rocks.

(Now, how do we make it so every school can rock too?)

Finally!

Blog_WhenOthersGetIt
By SB_FASD

It was the end of the school week.  We were at the school for a serious parent/teacher meeting, a meeting we had requested.  We had hoisted the red flag a couple of weeks ago – our guy’s behaviours at home have been escalating.  We were getting worried. If we are honest, it’s been a challenging couple of weeks (though still nowhere near as hard as it was previously).  He’s been talking about getting bullied. We were prepared for a difficult discussion.

We were ready.  We had print-outs of information about FASD all neatly organized in a binder to leave at the school.  We had a notepad with a list of topics we absolutely wanted to cover.  For the first time since he started attending this new specialist school, school refusal had reared its head that morning (if tentatively). We were there to help nip things in the bud, to explain our guy’s side.  Tired.  Defensive.  Pensive.  Rushed.

I guess we grow used to being parent warriors.  We grow used to having to push, to being overly forceful, cajoling, persuading (I have been known to beg at times) just to make sure those around him are giving our son a chance.  We were on edge.  There are few options out there if things don’t go well at this new school. We were feeling desperate, concerned.

We are not in daily contact with this school, as we have been with other schools. This one is a taxi ride away and we don’t see his teachers very often.  We don’t know them as well.  We do have some phone calls, emails, but we didn’t know what to expect in this meeting. How would they respond to the bat signal we sent out a few weeks ago when we started to see some things deteriorate?

We sat around a table with his teacher and his learning coordinator.  Friday afternoons are never the easiest for our guy, but he was awesome.  He participated in part of the discussion and they praised him for providing the details they needed.  I was impressed – both with him and how grown up he seemed, and with the way they gently reinforced him during the discussion.   After a while, we let him go into the hallway, where he amused himself while we spoke one-on-one with the teachers.

And then, magic.  It took me a little while to grasp what was going on.  I was off balance.  I was having trouble wrapping my head around what these two educators were saying.

I literally put down the pen, closed my notebook, and just absorbed it.  In all these years of formal education, never once had someone spoken like this about our son.

I felt this veil lifting.

They could see him.  I could see that they could see him.

I was floored.  Humbled.  Enthusiastic?  Overwhelmed.  On sadly unfamiliar ground, but ready to do a jig.

They talked about a kid who is helping others to learn, building friendships.  They were talking about a kid who is well-liked.  They were describing someone whose talents are recognised and celebrated by the whole school.  They talked with smiles on their faces about a kid who literally is dancing in the corridors.  They were talking about a kid who is exceptional in many ways.

They were talking about our son.

Most amazingly, they described a child who is so comfortable in himself that he is helping change a dynamic among his peers.  Through his example, he is opening up conversations about each person being unique, not fitting in boxes.

They see him!

They addressed the issues we were there to discuss.  Professionally, competently.  Compassionately.  In fact, we dealt with all those points on my sheet of paper without my having to tick them off one by one.  These educators – the whole school in fact – “gets it”.  I cannot explain what a mind-blowing change of reality that is.  We still haven’t fully absorbed the difference of being in a special needs educational setting.

Toto, we’re not in Kansas anymore.

Even if they have not had great experience with FASD, they were interested to learn. They welcomed the fact he is taking on board his diagnosis and told us with a chuckle about the time he cursed at the deputy head, and then apologized, saying he was “dysregulated”.  (We had the distinct impression they are not used to 12-year olds saying that.)  They welcomed our binder-full of FASD flyers, printouts, tips for educators.  They said they would share it with colleagues.

We could see the “aha” moments as we filled in some gaps about things that might be different about our guy from some of their other students.  We explained things like confabulation.  We showed sheets comparing the differences between FASD and other diagnoses.  We talked about how kids with FASD may seem like other kids – for example, those with autism – but still may have some key differences in how their brains work and why they work that way.

It’s not like it used to be – when he tried so hard to conform to other’s standards, barely keeping his head (just) above water despite swimming as hard as he could.

Now he is in a place that doesn’t have a one-size-fits-all approach.  Here, just by being the amazing, unique, lovable, complex individual that he is, THAT is enough.  THAT is actually more than enough – in fact THAT is inspiring others.

In his old school we were worried he was getting lost among a thousand others, overwhelmed.  His spark was going out because he was under too much pressure all the time.  We had hoped that in a smaller setting he might be able to shine.  We never imagined once he started to sparkle again that he could help others do so too.

As we listened we heard the whispers of an emerging leader, a child comfortable in his own skin.  Oh my days! (As our son would say…)  What a wonderful, wonderful, encouraging and uplifting thought.

All our kids deserve to be seen.  They all deserve to have a chance to shine.  We hear time and again of kids being shoved to the back of the room and left unsupported, their needs ignored or side-lined by those whose who are tasked with helping them access education.  We have always had supportive mainstream schools, which is sadly too often not the case for many, but even still our guy had felt the weight of that world on his shoulders, and it nearly crushed him. Inclusion was and is something we believe in fundamentally.  But inclusion is more than simply sitting in a room trying to do what all the other kids are doing.

The difference in this meeting at this school was that rather than sitting worrying about how to fit our son into a box that he cannot fit into, here at this school there is no such box.  He is being lifted up and guided by people who have the training needed to understand him.  Even though there are problems which are quite challenging – I don’t mean to sugarcoat this – here his own strengths are being seen for what they are: gifts to those around him.

As parents, there is nothing more we could ask – there is nothing more important than those around him recognising what we have known all along: Our family/the school/the community/the world is indeed a better place because our child is in it.

That tension inside released a little, and all I could think was … “FINALLY!”

FASD – Sometimes It’s a Puzzle

we-love-a-child-with-fasd-7By @FASD_Mum

Something major happened over the weekend.  OK, well, maybe the earth’s tectonic plates didn’t shift, but An Event happened in our world.  Most people wouldn’t even think of it as An Event.  But I say we have to mark the moments that come, and celebrate each and every step forward.

Miracle #1:  Our 12-year old – on his own and without any parental prodding – pulled the puzzles off of his shelf.  OK, so maybe one that was missing some pieces got tossed across the room.  But after that was dealt with, he quickly settled.  (Since changing schools, that is our new norm.  He still teeters on the verge of possible meltdowns, but they are no longer gathering full steam and with minor redirection we have been able to deflect them for the most part).

After the puzzle toss was over and his dad left the room, our guy remained there quietly for enough time that we began to distrust the calm.  Still, we stayed away, having absorbed all we have been told about needing to give him time to self-regulate.  Eventually, he came downstairs without any fuss.  It was only much later that he mentioned in an off-hand way that he had completed a puzzle.

What?!?

Miracle #2:  He had done a puzzle on his own.

We went upstairs, and there it was – all beautiful 50 US states of it, perfectly assembled, on his floor (four days later, it is still there, I am not allowed to put it away, so I think he also knows this is Something Special).

Maybe completing a 50-piece puzzle doesn’t sound like much to you whose kids were doing this at a tender young age.  But for our guy, this is huge.  For us, it is extremely heartening.

From the get-go, the way he approached puzzles was one of the first signs that his brain was different.  I remember time after time, even with some of the very basic puzzles, watching him literally try each piece every possible way to see if it would fit (trying to force the triangle into the square on a pre-puzzle).  He understood the idea of puzzles – that they all should link together, but he couldn’t seem to visualize in his head what a particular piece would look like turned 90 degrees to the side.  He couldn’t seem to grasp that if there was green on that bit, and green on the piece in his hand, then that is where they would match up.  He could not understand that all the straight edges would link together to form the frame.  He didn’t seem to get help from looking at the picture on the box, and then translating that onto the pieces in his hands – that if it is blue in the upper left corner, that blue piece will go up there.

We now understand that his brain, due to the injury caused by alcohol while in utero, can’t handle abstractions, at least not in the same way as other kids.  And what’s a puzzle if not one big exercise in making something abstract concrete?

We have learned over time that our guy doesn’t have a learning ‘curve’ – he has never progressed slowly upward in a steady arc.  He seems to plateau and then without warning leap to the next level.  It’s like one day something ‘clicks’ and then he ‘gets it.’  It’s hard to explain, and nearly impossible for the schools to wrap their heads around.  We keep arguing that everything goes in, we are convinced of it.  Sometimes it just takes a long time for him to be able to access things, to work things out.  Seeing this completed puzzle was a very welcome reminder of how he makes intellectual leaps and intuitive jumps.  Quite often these sorts of leaps happen after a period of seeming regression (which we have most certainly just experienced with all the school tension at the beginning of this academic year).  We don’t know if this is a trait of those with FASD or if it is just him, but it is the way he learns. We have seen it time and again.

And interestingly, these leaps often don’t happen in isolation.  We had noticed a couple of days before this that he suddenly started to play a Lego Harry Potter game on his tablet.  Again, you might think this is no great breakthrough, but this game is different from Candy Crush, for example.  This game requires him to plan ahead, to move through rooms completing various tasks, remembering where things are that are needed to do certain other tasks.  It is a more strategic sort of game.  It takes time and patience and ‘remembering’.

In fact, he is taking a new interest in all kinds of toys and crafts that we have here at home, including a new basketful of sensory items (magic sand being one of the biggest hits, second only to the oobleck that took over our kitchen for a few gooey days).  All this activity is keeping us on our toes, but in a positive way, rather than chasing after those debilitating mood swings we were facing only a few weeks ago.

We see more clearly in hindsight that the pressures of getting through the day at his old school affected so many aspects of his life.  His every nerve was taut and tight.  He had no mental space for these other things.  It’s not that this new school isn’t posing some challenges, particularly as he tries to understand the different atmosphere and tries to understand the behaviours of some kids who have even less ability to self-regulate than he does.  He is staring at and trying to correct the others, which isn’t helping anything.  But those sorts of challenges, real as they are, can be managed by an expert staff and with some reinforcement from us at home.

I think the proof that he recently has made a great leap forward is right there on his bedroom floor.  I’m hesitant to box it away too.  We are already googling for more puzzles, maybe a 100-piece one this time?

Really, we just want to shout it from the rooftops.  He did it!

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.

 

 

Gobsmacked

gobsmackedBy @FASD_Mum

The SENCO cried.

This week has been a ride through the rapids for our family.  Ups and downs.  Going from nearly drowning to the exhilaration of recognizing we might just get through. Getting around a particularly precarious bit, realizing it’s possible to breathe after all, and maybe even laugh.

Our son, who hours before had been in a fetal position under his blankets resisting going to school, was spontaneously doing multiple cartwheels down the school drive.  Then he did a dance of pure joy.  Soon, he was shouting out the car window to anyone who might listen, “I’m going to a new school!”

It’s been quite a week.

As you might guess, I am not one often at a loss for words.  But this week, this week I was overwhelmed to the point of silence.  (“Gobsmacked is the word you are looking for,” said my mother-in-law.)  We have heard so many horror stories of people having to fight bureaucracies hard every step of the way to meet the needs of their children with FASD, we were totally unprepared for a responsive, compassionate, quick and downright humane experience.  It left us dazed and humbled.

Nine days ago the panel met to determine our son’s eligibility for special provision.  Yesterday he had his last day at his old school.  Monday he starts at his new school.  It’s been a whirlwind of professionalism and goodwill from every quarter imaginable.  The powers-that-be all motivated and worked in synchronicity to do what everyone feels is best for our child and for our family.  We are deeply appreciative and humbled by the good cheer and caring that has surrounded our son during this process.

My faith in humanity has been restored. I cannot remember another time when my expectations were so totally exceeded on so many levels.

When the intrepid special educational needs coordinator (SENCO) at his current school heard he had been approved for special provision, she said, “It’s bittersweet.  I know this is best for him.  But I want to cry.”

The school he is leaving is a school worth fighting for.  It is run by progressive educators who believe every child can learn.  It has a vibrant program, including arts and music.  Last year our son, as an incoming Year 7 student, was centre stage and won the school’s “Got Talent” show.  It was a moment our guy will treasure forever, made possible by a school administration that puts great emphasis on nurturing the different abilities of its 1000+ students.  And yet, even here their hands are being increasingly tied due to changes in the national educational policies, and the limited budgets within which they can work.

Our son, with a slightly modified environment and less emphasis on GCSEs, could have survived in mainstream, if the government’s fine words about inclusion were backed up by the flexibility and resources to implement them in a meaningful way.  But our guy has one shot at these years, and it is too important to play out our political beliefs at the cost of his self-esteem.

And the SENCO knows that.  I suspect SENCOs across the country are weeping inside as they watch this nightmare coming.  The government’s new emphasis on tests are affecting all kids, and especially those with special needs and learning disabilities.  They are tying the hands of creative educators who want to include a diverse student population in mainstream classrooms.  And they are forcing hard decisions by parents across the country, parents like us who believe in inclusion but who must make the best decisions for their own children.

But this is a positive post.  In a world where we hear so many negatives, we feel the need to shout out with encouragement to all those who work within these systems to say, “It can work! Sometimes, it does work! Keep the faith.  Keep on fighting.  It is possible.”  We say that to encourage not just parents, but also those within the bureaucracies.  Sometimes we all need to know things can indeed work well.

We were expecting months of mornings like the ones we’ve been having – our son, completely dysregulated, begging us, pleading in every way he knows how to not force him to go to a school he finds overwhelming.  We had no idea that we could find out on a Thursday that he could start at a new school on the next Monday.

We never dreamed a place existed where our son would be so welcomed – not with trepidation as has happened every step of his educational way, but with excited anticipation.  But then, there we were. We had dropped by the new school on the Thursday to pick up a welcome pack. We were asked if we had a few minutes, the head wanted to come out to say hi, and within moments we were surrounded by two kids who will be his learning buddies, the TA, his form tutor.  We were whisked up to the classroom where he will be.  We met most of the 9 kids who will be in his class with him. We were shown artwork they made for him.  We had a 12-week-old puppy put into our arms. It was truly, truly amazing.  The warmth, the fact every adult and most of the kids already knew some of our son’s favorite things.  It was really so much more than we ever could have envisioned. And they didn’t even know we were going to be there that morning!

I am overawed at the love and concern and shepherding that is surrounding our guy. I am grateful. I know this is NOT the experience most people have, and it is so much more than we could have expected.  This is the way it should be – could be – for everyone.

We also are well aware that this is not a “miracle.”  It is the result of more than a year of hard work by the current SENCO at his mainstream school and the other professionals surrounding our son.  Once his FASD was better understood (and this admittedly is the culmination of a 10 year journey so far), they were able to bring in experts to make proper assessments: an outreach consultant from a local special needs school, an educational specialist from a division for physical and neurological impairments, in-depth evaluations from the speech and language team, detailed testing done at the school – supported and unsupported, to further understand our son’s spikey educational profile.  It is due to a forward-looking pediatrician who earlier had helped us to get a diagnosis when our child’s case was not straightforward and who recently has helped us engage with a local service for young people with learning disabilities.  The involvement early on of one educational psychologist who is expert in FASD whose detailed paperwork successfully counteracted some of the earlier, horrendous assessments done by other EdPscyhs.  It is a result of our better understanding of what is possible thanks to the contacts and connections we have made via online support groups on social media.  It helps that we have spent time researching and exploring options, seeking to better understand how to help someone with the brain injury of FASD to learn. None of this alters the fact that our son is benefitting from the goodwill and hard work of a number of key professionals, without the cooperation of any one of whom his move would not have happened so quickly or so easily. Even better, every single one of them has shared his joy at the news.

We know we are out of the woods yet.  We are certain there will be further bumps and knocks as we continue to navigate these rapids.

There is so much more to say.  But for this morning, this Saturday-in-between-schools, my husband and I really just want to say “thanks.”

Our son, who just woke up, is sitting by the heater, watching You Tube videos of people tapping cups to a beat.  He just spontaneously said, “Yesterday was my last day at my old school.  I am proud.  And Monday I start my new school.  I am happy….EXTREMELY happy.”

Such sweet music to my ears.


Paying it forward:  For those of you who may benefit from this, here are some authoritative quotes (with their citations) to use to back up your efforts to get educational authorities to re-think the way they are educating your child with FASD:

Fetal Alcohol Syndrome: “This [brain] damage results in difficulties for students in many areas of the curriculum in the acquisition of new information, linking new information to previously learned information and the practical application of knowledge gained.” [Secondary Framework: Teaching and Learning Strategies to Support Secondary Aged Students with Foetal Alcohol Spectrum Disorders (FASD), Carolyn Blackburn, Project Director, Professor Barry Carpenter, OBE, NOFAS UK, 2010, page 6.  http://www.nofas-uk.org/documents/FAS-eD%20SECONDARY%20FRAMEWORK.pdf%5D

“Students with FASD will require informed, empathetic, reflective practitioners who are prepared to personalise learning in order to provide a practical, multi-sensory approach to teaching with opportunities for 1:1 support, small group work and extension activities, which allow students to consolidate and generalise their learning experiences in readiness for living experiences.  [Secondary Framework: Teaching and Learning Strategies to Support Secondary Aged Students with Foetal Alcohol Spectrum Disorders (FASD), Carolyn Blackburn, Project Director, Professor Barry Carpenter, OBE, NOFAS UK, 2010, page 9.  http://www.nofas-uk.org/documents/FAS-eD%20SECONDARY%20FRAMEWORK.pdf%5D

“Multi-sensory learning creates multiple neurological pathways to learn. This whole brain approach maximizes understanding, learning, and memory. Multi-sensory learning eliminates the possibility of information solely being presented in the student’s weakest sensory modality and, instead, ensures addressing a student’s learning strengths. Involve as many senses as possible when learning: visual, auditory, kinesthetic, tactile” [Understanding Fetal Alcohol Spectrum Disorders (FASD): A Comprehensive Guide for Pre-K-8 Educators, Chandra D. Zieff, M.Ed. Rochelle D. Schwartz-Bloom, Ph.D., Mark Williams, Ph.D., Chapter Four, The FASD Student and the Classroom, https://sites.duke.edu/fasd/chapter-4-the-fasd-student-and-the-classroom/use-variety/]

“Creating multiple pathways to learning is the most effective way for FASD students to learn. Learning occurs more easily when words are linked to an action, paired with music or a rhythm. This can help students anchor information input and trigger or cue information retrieval: Pair oral information with visual cues; Teach concepts through art, music, and drama…” [Understanding Fetal Alcohol Spectrum Disorders (FASD): A Comprehensive Guide for Pre-K-8 Educators, Chandra D. Zieff, M.Ed. Rochelle D. Schwartz-Bloom, Ph.D., Mark Williams, Ph.D., Chapter Five: Effective Strategies for Information-Processing & Memory Difficulties, https://sites.duke.edu/fasd/chapter-5-the-fasd-student-and-learning-issues/effective-strategies-for-information-processing-and-memory-difficulties/%5D

One Canadian study placed the average life expectancy at birth for people with FASD at 34.  [Thanh NX, Jonsson E., Life Expectancy of People with Fetal Alcohol Syndrome, J Popul Ther Clin Pharmacol. 2016;23(1):e53-9. 2016 Mar 9, https://www.ncbi.nlm.nih.gov/pubmed/26962962%5D

“The importance of providing appropriate support for students with FASD cannot be emphasised enough. The secondary behaviours … may become disabling. Research describes the bleak outcomes for some young people with FASD: mental health problems (seen in 87% of children; O’Connor et al, 2002); disrupted school experience (60% over the age of 11 years; Riley, 2003); trouble with the law (60% of teenagers; Kelly, 2009); imprisonment (50%; Kelly, 2009); inappropriate sexual behaviour; problems with dependent living (80%; Riley, 2003) and employment (Streissguth and Kanter, 1997). They also are at increased risk of developing addictive behaviours such as alcohol abuse, thereby potentially continuing the cycle of FASD into the next generation (Baer et al, 2003). Streissguth and colleagues (1996) found that 3% of 6–11-year-olds, 12% of 12–20-year-olds, and 23% of adults from a cohort of 415 subjects diagnosed with FAS or Foetal Alcohol Effects had attempted suicide. (The adult figure is five times the US national average.) [Complex Learning Difficulties and Disabilities Research Project, Foetal Alcohol Spectrum Disorders Briefing Sheet, Specialist Schools and Academies Trust (SSAT), Information Sheet, http://complexld.ssatrust.org.uk/uploads/1c%20fasd-info.pdf%5D