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

Defeat is the Enemy

my-heart-broke-for-the-thousandth-time-watching-him-rage-against-this-world-and-the-pressures-we-put-on-him-to-conform-2By @FASD_Mum

He was on the floor, screaming, his voice hoarse from crying.  He did not want to go to school. He tried to tell us this in every way he could.  It started as soon as he woke up, “Mum, my nose is still running. [It wasn’t.] I have a cold.  [He did, last week.]  I can’t go to school.”  Later on he changed his approach, said his tummy ached.  Then he switched tack and told us he doesn’t like school, it’s “boring.”  “I want to stay home with you.”  As his more peaceful entreaties failed to sway us, as we brought out the school uniform and steamrolled past his comments trying to get him dressed, his panic began to escalate and became palpable.  It stopped being words, started being actions.  Running up to his room, hiding under covers.  Going into his calm space, pulling the curtains, asking us to leave him alone.  We asked him how much time he needed, gave him a few more minutes as we have been advised – so that he had some say in how the morning should go.  But the clock was moving, and we had another child to get to school.  Work to do.  We really needed him to go to school.  He fed off our growing tension, things got worse. Five minutes later, when we went back, he was still not ready.  We ramped up even though we knew we shouldn’t.  He really didn’t want to go.  We really needed him to go.  Things started flying.  Chaos, again.  Fetal Alcohol Syndrome does not make for gentle mornings in our household these days.

Before this morning was done, he became fully dysregulated.  His brain was overwhelmed, locked in fight and flight mode.  We were beyond getting out of this calmly.  He was screaming, crying, kicking, pleading, begging, entreating me directly, “Mummy!”

My heart broke for the thousandth time watching him rage against this world and the pressures we put on him to conform, hating ourselves for trying to bend his will to a system that is not designed for someone like him.

And then, there it was.  The moment of defeat.  He had surrendered.  I could see it in his eyes.  He disappeared a little more inside himself.  He lost his battle, again.  He headed off to school reluctantly with my husband, shoulders drooped.  Shattered.

We all are shattered. This morning was like most mornings these days.

I ache inside for what he loses every time this happens.

I don’t think that his teachers understand what it costs him just to walk through the school doors, through the halls, to sit expectantly at the desk knowing they aren’t really talking to him, aren’t really expecting him to light up with the answers.  Every single time he goes into school is an act of courage.  Lately it also is increasingly an act of defeat.

We have finally understood the need for change.  We have heard him.  We do listen.  We are making moves to get him to a special needs school now – especially since it has been made clear to us that the changes in mainstream education leave no place for someone like him.  We see that he is being set up to fail.  But bureaucracies move slowly.  We are not at all certain we will be able to get him into the school we want him to attend.

We are in a no-man’s land.  We have told him we will look for a new school and that it will take time.  But he really is struggling, and he needs something to change now, today, this minute.  For someone with FASD “taking time” is a hard concept on a good day.  And these are not good days.

He has regressed – playing games, watching shows that he used to like several years ago. His little being is so tensed up with anxiety that he has no resilience, no give-and-take.  He is always 30 seconds away from exploding.  His senses are super heightened.  I ate a raspberry the other day, and he instantly asked “What’s that smell?” and pushed me away because it was unexpected.  These are days when we have to tiptoe gently since a meal can be rejected due to a wrong spoon, a slightly different type of sausage, fish fingers that are not Birds’ Eye batter-dipped, or if someone “breathed” on a spoonful of food.  These are days when tooth-brushing is like a physical attack, when the way a hair band grips can lead to a massive meltdown, when a bit of water on a paddle ball racket has people ducking for cover amid instant mayhem.

It is heart-wrenching.  And exhausting.  We are living on edge as this school situation sorts itself out.  We are not the only ones.  There are many, many people whose kids are being forced to fit into classrooms that are not bending enough for their needs, classrooms that are constricting creativity to be able to meet the demands of the new guidelines regarding GCSEs.  There are too many kids with FASD who go into schools that fail to recognize this as a disability and don’t make the necessary “reasonable adjustments” to allow that child a chance to succeed before he or she fails or acts out or crumbles under the pressure.

I dread the defeat I see more and more often in his eyes.

No, worse than that, I fear it.  That defeat is the enemy.

I want him always to rail against this world, to stand up for himself and his beliefs, to think that when he tells people what he needs in a moment they will listen to him.  I hate, hate, hate that despite the fact he has told us in a million ways that school is overwhelming to him, that he is not happy there, that he cannot access what is being taught in the way it is being taught, we still must force him out that door.  It makes me question my parenting.  It makes me feel selfish.  It makes me feel like I am not doing my Momma Bear job of protecting my cub in a mean and sharp-edged world.

So, we bend in other places.  I find another spoon, quietly put aside the fish fingers that are not batter-dipped, dig through the refrigerator for something else he might or might not eat.  Lately, nearly every day  after school he is so beside himself with pent-up anxiety he has a meltdown-that-comes-down-on-us-all-like-a-ton-of-bricks, even though we have come to expect it.  Afterwards, I sit with him for hours in the dark.  I just sit there next to him, hoping my presence calms him, proves to him that I am on his side. Together, we wait for that moment that always comes at the end of these long days, with a little sigh somewhere just before sleep, “Mummy, I love you.”  “I love you too pal.  I love you too.”  Sleep tight.  Sweet dreams.  You’re a good kid.

We know that secondary disabilities are a huge threat to the well-being of people with FASD – too many tender lives are shortened needlessly as a result of addictions, dangerous behaviours, suicides – by-products of the toxic frustration that builds in kids with limited coping mechanisms who feel misunderstood, outcast and who seek temporary fixes to feel better.  We hear that policy makers in London are concerned about our kids’ mental health.  The young royals try to raise these issues through charity work.  And yet, no one focuses on the significant proportion of the population with brain injury due to FASD, whose mental health is at stake and worsening as a result of inaction and lack of support from The System.

The government’s sweeping changes to education policy is making it worse, not better, directly impacting the daily lives of kids like our son.  Scenes like the one I have described are happening in front halls and/or in schools across the country as the children signal that they are unable to cope in an environment that is too rigid.

What exactly, I would like to know, are we expected to say to our kids, you know, the ones who try their hardest but who just aren’t going to get those grades? The ones that are in the grey area – getting by, barely, but at such a great cost to their self-esteem – the ones none of you really think are going to cut it in the new system…?  The ones who know it too, who rail against going out the door to school for very legitimate reasons.  The ones who have no choice when the entire adult world comes down hard on them to just go to school, no matter what?  The ones who get detentions for not doing homework they didn’t understand, who crack jokes rather than show that the teacher’s instructions passed them by?  The kids who are bullied or the ones who lash out?  The ones who didn’t have support and, yes, failed that test again?  What do we say to stop that mind-numbing defeat from taking over their whole being?

We tell them we love them.  We seek every possible way forward, banging on every door that we know.  We reach out to other parents. We seek experts who can advise us.  We ignore those who say we have to live with things the way they are.  We don’t give up, and we don’t let that defeat seep into our kids’ inner core.  We hold onto them.  We cherish them.  We tell them at the end of each and every long day, we love them.  We are there for them.  Together we will find a better way.  And somehow, deep inside, we have to believe it. It’s hard.  Oh, yes.  It’s hard.  But we have to keep that spark alive.

FASD Awareness is Needed in Classrooms Every Day

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

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

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

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

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

And then it happened.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

Dear Teacher -

By @FASD_Mum and @FASD_Dad

Dear Teachers,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So, thank you.

Love,

Your student

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


Dear Teachers – PDF for printing and sharing

 

 

Homework is evil

We love a child with #FASD-2

By @FASD_Mum

We spent the better part of half-term calming down our child, chasing around his moods, finding ways to chill him out, de-stress, and reconnect with his happier self.  As he hits his pre-teen years, we are still struggling to find our footing with a new (or more apparent) set of challenges related to his Fetal Alcohol Syndrome.  During this break we also were trying out a new medication regime (meaning, we are seeing if we can take him off 24-hour meds and give his poor strung-out body a break).  But we are not at all convinced the chemical roller-coaster of medication in 4 hour spurts is good for him (since he cannot yet understand it) or good for us (since we too ride this roller coaster with him).

But we managed, even if we did not succeed in keeping him off the meds for the entire holiday as we had hoped.  He even had some moments of joy, including an afternoon spent walking down country lanes with a sweet family who invited him over for a few hours.  He walked two inches taller that day with his friends, feeling independent, valued, and also grown up as he played so well with a 15-month old.

We breathed a collective sigh of relief when he went back to school Monday morning, relatively optimistic (meaning, we at least managed to get him into his uniform on time) and presumably ready (meaning we had cleaned out his backpack and pockets for all illicit candy and extra change and old drinks bottles, his jacket was recently washed, shoes looking relatively spiffy, etc.). He was fortified and ready for this next half term.

Or so we thought.

By about 8.30 am we were quickly notified we had screwed up and failed to attack homework projects that were supposed to be done over the holiday.  Threat of a detention was now hanging over his head 15 minutes into the new half-term.

To be honest, we were so busy surviving over the half-term, we didn’t think to look.  The school’s state-of-the-art homework app has somehow reset itself on my phone and, no, I have not yet figured out where I wrote down the PIN.  We had arrived at a deal with the school last half-term that since homework was such a battle at home, they would seek to do it with him during the morning clubs, homework clubs and extra time they have in his schedule for one-on-one time.  We are supposed to do an online reading program at home, but before break they said they are revisiting whether or not that might be too easy for him.  We simply did not realize there was a bigger project due and they had not flagged it for us in the crazy days prior to the break.

Fast forward to home time after school on this first day back when, to avoid the detention, we were supposed to do the project.

Not. A. Chance.

It’s hard to describe how gripping this can be when our son’s more primal defensiveness gets stirred up.  This child was not going to sit down and do this homework.  Not then, not that night, and as I have just discovered, not this morning.  There is no room when his brain gets this stressed out for creativity, for problem-solving, for negotiating. When this defensiveness kicks in, it is a full out battle royal in which he is fighting with every fiber of his being to defend himself.  Imagine the ferocity of the terrible twos on steroids.  He is standing up for that which he cannot fully explain, so it becomes a whole body vehemence, an insistence that his will must be heard.

We have been through a very difficult 12 hours as a result of the homework-that-is-not-done.  (I have learned that it is not enough for me to say ‘difficult.’  What I mean is that things have been so rough that my husband and I have alternatively been behind the closed kitchen door, heads hung low in defeat, tears in our eyes.  I mean it’s been some of the hardest days of parenting, and we have been having too many days like this recently.)

I cannot imagine any educator would think this one model was worth the screaming, throwing, breaking, kicking, shouting, poking-himself-in-the-eyes chaos we have just unleashed in our efforts to avoid the detention he says he doesn’t care if he gets.

At root of all of this, I think he a) feels defensive/inadequate/confused, and b) doesn’t understand the assignment.  The idea is to make a model of a Burgess model of city design – it’s an abstract concept of how cities are designed from their inner central business district, to an industrial ring, then lower-income, medium-income housing and surrounded by more green space.  Either his brain cannot handle the abstract concepts of it or he knows something about this assignment that I am not doing right and he cannot explain it to me.  There was mention of Play-Doh, though we had a giant escalation when I brought out the dough.  Instead I chopped up a shoe box, helped cut out concentric circles and mock-ups of various buildings, and was ready for him to help label things.

Not. A. Chance.

We kept the dog safe and scissors tucked away in case they were added to the very many things sailing across the room.  My husband and I were bewildered, pre-caffeinated, and not at our best.

Sure, there are some out there reading this who will know we should have prioritized calming him down.  We did.  Or we tried.  We tried foot rubs, quiet time in the bedroom, time sitting together on the couch watching the umpteenth rerun of Total Wipeout. Last night before bed, we had some lovely head-on-my-shoulder cuddles in the semi-dark.  It was all fine and dandy, until The Homework reared its ugly head. Again and again.

Finally, this morning, we decided to put it away and not do it. We agreed to send in a note to the school.  Fifteen minutes later, our son said quietly, “Fine, I will do the homework.”  Foolishly, I became optimistic and cheery.  He came to the table, scrawled one label on the model, I asked him to write more neatly, and zoom, we were off again, worse than before.

“I hate gold awards anyway!” our son shouted at one point.  He must have seen some of his classmates’ models.  He must know what I was trying to get done in the short space and with his limited patience/attention span was not right, not good enough.  Yet again, I feel sadly like we have set him up for failure.

Interwoven in all of this was a fixation about how he needed to ‘style his hair’ – something he has been saying since he came home from school yesterday.  We don’t know if this was due to comments from friends yesterday or if it is regression because he found other things hard.  But that was his primary focus over night.  He needs a haircut, yes, but there is no ‘styling’ that can physically be done to this hair now at this length, at least not with my meagre skills in this area.  An answer of course that did not meet with a gentle reaction.  (This is not a diversion but a continuation of an old/ongoing story.  One of these days I must write a piece that focuses solely on the major impact that hair, wigs, hairstyles, bandanas, scarves and hairbands have had on our world, a fixation that has revived itself since he came off the 24-hour medications, probably due to sensory needs.)

So, where are we?  Wiped out, drained, defeated, scared.  My husband took him to the tow path by the river for a scooter ride to hopefully get out some of this negative energy before school.  We are ready to up the level of meds now to 8 hours a day, though we are worried that this violent reaction may be a growing side effect yet again to yet another stimulant medication.  We are worried that we cannot keep up with this escalating distress.  We are worried that our professional lives are suffering as a result of this disequilibrium at home.  We are concerned that it took 45 minutes to convince our son to get dressed for school, to repeated and heartfelt screams of “I hate school!”  No parent wants to force their kid to do something that so clearly is disturbing him.  I have just heard from my husband that today was by far the most extreme behavior en route to school, complete with kicking, spitting, hitting, and verbal distress, though he finally settled down to finish the model with the assistant at school when he saw some of his friends touching up their models.  So, hopefully, detention at least has been avoided.

The hardest part of days like today and yesterday is when they hit you when you least expect it.  This time, the trigger was a homework assignment.  It is squarely our fault that we did not catch this, that the communication with the school fell through on this one, that we pushed on with trying to do it despite knowing he would have an escalating reaction.  His brain injury makes it impossible for him to track due dates and to remember such things reliably.

But seriously, homework for a kid who uses every ounce of his being just to survive a school day?  It certainly is not educational.  It feels destructive and counterproductive.  There are not enough hours in his day to decompress.  Our work at home should be focused on reinforcing his ability to walk through those school doors in a positive frame of mind, fortified and ready for the day.  For our son, that task is more important than any model made of clay or old shoeboxes.  That self ease is what will allow him to succeed academically since for him to learn he must be relaxed.

I used to love homework.  I would stay up until midnight, overachieving and stretching my mind.  I never thought I would say this, but I have learned that homework has a Dark Side for some kids. It’s not helping, that’s for sure.

 

 

The Most Powerful Video on FASD We Have Seen

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By FASD_Mum and FASD_Dad

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

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

Our Son with FASD ROCKS!

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

By @FASD_Dad

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

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

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

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

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

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

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

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

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

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

Our Son Struggles with FASD – Just Look into His Backpack

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By @FASD_Mum

Opening our son’s school backpack takes a sort of courage, especially if he happens to be in the room when we release that first zip.  All sorts of half-formed anxieties await below the surface.  The school bag in many ways represents the various challenges a child with a Fetal Alcohol Spectrum Disorder faces on a daily basis.  It also shows our inability as parents to protect him in all instances.  It shows we are right to be concerned when he goes out that door each morning. We know it is good for him in the long run to go, but his backpack tells the story of the battle he rages every day in a mainstream school.

The first thing I notice every time is the mess.  Things have been hurriedly crammed into the bag.  I unfurl the curled-up library paperback, disentangle the reading record from the geography book, smooth out the crumpled pages, and hope the teachers won’t notice.  I take out the three nearly empty drink bottles, pleased that at least they didn’t leak, and wonder again about how much money he is racking up on his school meal account.  I find some loose sheets of paper crumbled down at the bottom that appear to be worksheets for some homework assignment that never made it into the hard plastic folder we have put into his backpack to protect just such stray sheets.  I open the folder and feel that familiar thud in my stomach when I notice he has not yet handed in the history homework we battled over several days ago. I try to remember the last time I checked this bag.  I thought it was yesterday, was it longer?

Next, I open up the planner and notice that the helpers have indeed written down what homework is due, but they continue to enter it on the day the assignments were given rather than the due date, making it nearly impossible for him to sort through, requiring him to page back a few weeks to see if anything happens to be due on a given date.  We all have the cutting-edge homework app on our phones.  We thought he was on top of things this week, but then we notice, hiding there in the written planner, an assignment due tomorrow that was never posted by the teacher onto the online homework program.  Once again, I recognize that sinking feeling, knowing he is not good at surprises and accepting we are unlikely to be able to do this quickly, now, before school.  Feeling defeated that I had not noticed this sooner.  Worried he may face a detention.  Again.

Next I notice that he has written on the top of every day in his planner until Christmas “no lunch.”  I ask him why, and he says he “hates lunch.”  It’s impossible to sort out what the problem is, knowing that he often has some social crash based around the lunchtime freedom.  Sometimes this is minor – a difference over a song, sometimes major – like when we found out one bully was taunting him into kissing people.  He is supposed to have pre-scheduled clubs at lunchtime.  But he is vague as to whether or not he is attending them.

I peel back the zipper on the pencil case.  Beyond the shreds of sharpened pencil debris, I see snapped, bitten, broken and mangled pencils and pens.  It has not been a good week.  Eraser crumbs fall all over the floor.  One burst pen must be handled carefully.  I wonder if he got any ink on his mouth that day.  Later, I google to reassure myself that modern pencils contain no lead.  The chewy pencil topper we bought seems to have been mangled somehow – we had heard he was pulling it off and dangerously putting the whole thing in his mouth to chew.  I spot some gum wrappers and hope that at least the gum was chewed during his break, though he is quite proud of saying he knows how to hide gum under his tongue.  I wonder again, looking at the gnawed pencils, if the school is right to ban the gum in the classrooms.

The locker key miraculously has not been lost yet, but it is never in the one dedicated pocket for the key.  The healthy-ish pack of cheddar crackers remains untouched.  The extra math flash cards are still buried so deep in an outer pocket it is unlikely the teacher is aware they were sent back more than a month ago despite my frequent reminders that he should return them to the teacher (the school is trying to identify his specific difficulties with math, a known difficulty for kids with FAS).  The eyeglass case is equally far down, indicating he has not used them at school for a long time.  The stress block the special education team gave him to squeeze seems to have teeth marks in it.  I see a partial piece of a crumpled note about a class outing with a deadline that appears to have passed.  There’s a shiny green apple that he bought for a snack but refused to eat due to one tiny bruise.

The whole disorganized, overwhelming bag shows our son is not able to organize himself during his school day.  There is no surprise there.  We all know this is a symptom of FAS.  His teachers know.  The special education team knows.  We know.  Even he kind of knows.  And yet every day, here we are – we look into his backpack with its crunched up, confused, snapped-pencilled jumble equally showing accomplishment (when did he learn that, look, he did well on that) and cries for help (why was that sheet torn, why did he find that piece of work frustrating?). We can’t tell if the subject matter is too advanced for him (and then we receive notice he is performing just below average when compared to the entire class, which proves what we have always known – he is capable, but he has a different learning style).  We can’t tell if the classroom noises distract him (though he has brought home the earphones we sent in for his ICT lessons).  We can’t tell if he is hungry, distracted by needing the toilet, in need of several star jumps to clear his head, or simply being a bored pre-teen in what might very well actually be a boring lesson.  The school day is a big black box into which we have various glimpses through his bag.  And whatever half-sentences we might hear at bed time.

I try to sort through it.  I try.  I try to mentally tick off the various things he needs to have for this day at least.  Does he need white socks for PE or shinpads and football socks?  Does he need trainers for dance club?  Am I sending in the hummus, red peppers,  and yoghurt on the right day (he says he needs it today but the teacher’s notice in the planner was not specific, thanks very much).  Why haven’t they let us know the date for the talent show?

And all the while I am focused on this backpack I am ignoring (or trying hard to ignore) the elephant in the room – the fact he was sent out of his last class yesterday for burping.  Yes, our sweet son has been copying “The World’s Loudest Burp Ever” from a woman on YouTube, who helpfully posted a how-to instructional video. He woke up this morning determined to burp his way into stardom.  He is “not bothered” that he might get sent out again if he does it again today in school (the teachers of course do not know or care that he is following an instructional video, seeking fame and glory).  I commandeer his phone so he won’t bring at least this distraction in to school today and I delete the eight videos of him showing his friends in school how expert he is at burping (I imagine these videos were made when he was sent out of class).

The school knows, we know, everyone knows he is at his least able to control himself during the last period of the day, the one period they have after lunch (which, remember, he doesn’t want to have).  He shows us in his own way that he can’t hold it together for so many hours.  But only when he does something extreme like burping incessantly does he get released from class (because he cannot verbalize or recognize his sensory needs, not fully, not yet – if he could, they would accommodate him).  I worry what happens in Year 10, if he is already learning the benefits of being naughty in Year 7. That’s the big worry about this bag.  Where is it leading us?

Our son goes to an excellent school.  They are attentive to his needs, but not one educator in the school has had any training about FASD.  He is the canary in this particular coal mine.  Statistically, there are other kids in his school with the same issues.  Out of 1,000 kids, a safe guess is there are 30 others under that roof who have at least some of the problems due to brain injury from alcohol while in utero.  He is not alone, and yet he is very alone.

But this morning, right now, I am focused on my own son, his messy backpack, and hoping with all my heart that he gets sidetracked from his burping spree long enough to remember to turn in his foodtech homework, long enough for someone to see he actually did a pretty good job on it, my fingers crossed that he is bringing those fresh chives in on the right day, and really hoping he doesn’t need his trainers, which I just noticed by the door. Ignoring the fact he went out into near freezing weather without a winter coat because “none of the other kids wear them.”  I give in on this one point, risking he might catch a cold, because I know just how much he wants to simply be like the other kids.  And because I also know, by my mental reckoning, that there should be another of his coats crammed into his locker (another scary frontier), in case he might need it. I feel worn out and it is not yet 8:00am.

Communicating Through the Barriers of FASD

We love a child with #FASD

by @FASD_Mum

For nearly 10 years I have watched our son yearn to express himself, to find his words, to express his thoughts. I have seen him intently try with his entire being to make me understand what food he wanted, what game he was trying to play, what thing he tripped over, why the tight socks were not the ones he wanted to wear.   I have seen his despondence erupt into frustration and anger at himself, the world, us when he just couldn’t quite say what he wanted to say.  When he’d lost the thread.  I’ve watched hope sunset in his eyes, and despair take over as his thoughts moved on or his emotions took hold.

I have seen him as a toddler strapped into a speech therapist’s chair, yearning desperately for the bubbles she wouldn’t let him have until he made the ‘b’ sound.  Every ounce of his little body telling us, showing us, entreating us to let him have his hands on those bubbles. I have felt that Momma Bear in me roar, and I demanded they stop that game, give him the bubble, teach him some other way.

I know I am not always right, but I trust that instinct.  When I feel it welling inside of me, I do not ignore it.  That primal flood of protectiveness comes from somewhere as deep and old as our universe. It has power and truth, and whether or not this child’s first spark of life was inside my womb or another woman’s some life force, some bond connects us two.  If I say my child, who was once strapped into a chair after every meal in a Russian baby home until he did his business, if I say my child will not ever again be strapped into a chair to be forced to learn, I mean it.   Until this moment, I had not even realized why I reacted so strongly.  I had not made the connection.  I just knew it was not right for him.  Sometimes we don’t understand ourselves until later.  In this case, much later.

He’s eleven now.  Speech and language therapy has been the one constant support he has received from his earliest days with us, and with that one exception, it has been productive, useful, essential.  The little boy who did not make one voluntary sound at the time of his adoption at 16 months old is now speaking in full paragraphs.  He is using “-ings” and connecting words.  He knows what is on, in, and under something.  He knows what is bigger, biggest.  He can order the picture cards, so the kid first puts on her jacket, then goes outside, before she gets into the car and drives away.

And now, they say, he doesn’t need therapists anymore.  His school can take over.  Yes, he is behind his peers.  He does still at times reach for words, and needs prompting, but he did well on this one test.  They ask us what we think he needs more from them.  Because they don’t think he needs their direct help any more.

I want to say, he needs a future.  He needs words that he can use to find his place in this big, wide world. More words, better words, bigger words, more flexible words.  He needs consistent access to the information inside his brain.  He needs tools to help him cue himself when a thought falls away from his tongue.  He needs tips on how to remember what he hears, to find ways to say it back.  He needs not to be told that the job of helping his speech and language ends when he finally gets “-ing” words.  He needs not to be written off, just at the threshold of his next level of learning.

This therapist started by asking what we picture for him in the future, as if she had already decided the bare minimum was all we wanted.  We want him to access all his brain has stored, his knowledge, the hundreds of books he has read in his own way – not linearly, but connectively.  We want him to give voice to all his hopes and dreams.  We want him to be able to whisper sweet nothings to someone someday.  We want him to be able to communicate his wants and needs, rather than get tongue-tied and all bottled up and confused until his emotions explode forth.  I pleaded for them please to at least wait a few months and see him again, to perhaps pull out some other slightly harder test that I know they must have in their bag of tricks. To work with him further, to help identify other deficits he may now show, since he is finally speaking in full sentences and using “-ings”. To not let him go just as he is starting secondary school.  To not leave him at primary level and say that is good enough for their expectations of him.  To not have to ask us if we think this is good enough for where he is going in his life. They are good people, I know they want to help our son. But they, like most other professionals and educators we have met, do not understand FASD and the impact prenatal exposure to alcohol has had on our son’s brain.  Once again, we stopped being parents, became the teachers – our desires for our son’s future somehow is irretrievably intertwined with our ability to explain it, again and again. And again.

I had panic swirling inside me after we went home from that session. Then I found that a friend, who did not know what we were doing that day, had posted the video below on my Facebook feed.  And there it is.  I recognize this dad’s intense insistence to find his autistic daughter’s voice beyond the barriers.  The world will hear my son’s song, just as this amazing girl’s words are now coming forth, not one at a time, as her parents might have once only dared to hope, but at her own speed, in her own way, with deeply intense passion, feeling, perception.

Kids with FASD desperately seek to be understood.  With their entire being, they try so very hard just to say something, to get it right, to fit in, to show us what they mean.  Their frustration and anger is not because they are “bad” or “lazy” or “naughty”.  Their aggression and their lashing out happens in part as a defense because they don’t know how to be heard. As parents, we have to help them find their voices.  Patiently, persistently, every day, every week. Every person on this planet has a gift to share, has a desire to be heard and to be loved for who they are.  We must never give up on helping them share their voices with this world.  Don’t you ever give up on my child. I know what magnificence is still locked up inside him, and he needs more than “-ings” to let that free. His very soul sings.

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Additional resources:

“Why is FASD diagnosis so important?” – Smart Speech Therapy, LLC.  Excerpt:

Children with alcohol related deficits ‘slip between the cracks’ when it comes to qualifying for and receiving services (Kjellmer & Olswang, 2012). —Public school professionals commonly report a lack of knowledge of FASD and how to appropriately plan for affected children (Koren, Fantus, & Nulman, 2010). As a result these children tend to be significantly underserved because their learning and behavioral difficulties are not always recognized and understood by educators (Watson & Westby, 2003). Due to the diffuse nature of deficits, these children lack a uniform linguistic profile.

School trip

SchoolTrip

by @FASD_Mum

Knowing he is out there, on his own. Trusting he has enough positives to make it through the negatives.  Hoping he understands himself well enough to know his limits and his potential.  Praying if he gets into a dark space that someone will help him through to safety.

Parenting a kid with special needs becomes symbiotic. The parenting role has another intensely intertwined level of help and assistance that means you are not only preparing to launch your child out there into the world, but you are walking with them, they are leaning on you each step of the way.  The time for and definition of independence is not the same as with other kids.  It makes you reevaluate terms like “independence.”  But then, who among us is truly independent anyway? None of us.  We all need someone.  Kids with special needs can be independent, but in a different way.

Our son is away with his class for the week.  These mornings, he does not come bounding down into the living room with his always energetic eagerness and huge morning smile.  He is somewhere else, coping on his own, living his adventure thanks to a mainstream school teacher who has gone the extra mile to make this possible.

I have never really understood those parents who cried at school gates as they left their kids for the first time, or those parents who lingered at the door when dropping their kids off for a sleepover or those who called frequently when leaving their child with someone else.  Our eldest has been outgoing, self-supportive, and easily adaptable since day one.  But when we dropped our youngest at the school and he wanted us to leave him in the hall as they waited for the bus to come, I felt like those parents must have been feeling.  This time, I wanted to stay to reassure myself that he would be okay.  But we did leave as he asked (after checking with him four times to be sure that is what he really wanted), hopefully giving him that confidence that comes from knowing that we trusted he would be okay.

I hope he is okay.

He will grow up.  He will grow up with a disability.  He will become a man.  He will become a man with a disability.  I never want this disability to define him.  It is a part of him, and that should not be hidden or denied.  But he is more than the tests, more than the diagnosis, more than a statistic. He is a brave, smart (yes, he is smart), caring, seeking, stretching, fine young person who has to find his way – with help – in this busy world.  I am proud of him.  And I miss him this morning.  But I know, really know, he is okay.  And we are going to have to give him more independence as he gets older.  I am going to have to trust this world to treat him gently, to guide him away from dark places and toward the future he deserves because he tries so damn hard every day of his life.