Christmas Gift Ideas for Little Ones With FASD

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By @FASD_Mum

This is for those of you who, perhaps like us, may be behind in the Christmas shopping department and who may be looking for gifts for those little ones with FASD.  These are some items over the years that have been big hits.

Apologies, many of these links are for UK sites – but most of these items are available elsewhere.  These are suggestions only, of course we can’t endorse any specific product.  We understand all kids are different, what calms one may have the opposite effect on others.  But in case it’s useful, this is a glimpse into what has worked for us over the years.  (There are lots of great items available on sensory toys websites.  Here is one example of a great site.)  Christmas isn’t just about presents, and for our kiddo less is often better.  We are posting a variety of things here, just to get those creative juices going if, like us, you are staring into these coming holidays like a reindeer in headlights.

Our main point is that while some of these might not seem like presents you may have wanted as a child, they might be extremely welcomed by a sensory-seeking kid.  So, think outside of the box.

A heavy furry blanket.  Our guy has one he uses every single day, it’s great for sensory regulation and calming.  I have no idea if this one is heavy, it’s just an example.    screen-shot-2016-12-04-at-10-28-02-am

Soft colour changing pillow.  This one is really soft.

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Emoji bedding – we have used an emoji duvet cover and emoji pillows to help develop strategies for how to go from angry to happy (see this blog post) and to help him describe how he is feeling.  (We also have been known to encourage throwing the emoji pillows at a bare wall when frustrated or punching the pillows…) He loves emojis!

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Sensory den/dark pup tent.  We have always wanted to have enough space (and money) for one of these or a bean bag chair (there are lots on that site, including some great full body loungers and some for teens).  You can be creative.  We have improvised by the bottom of a closet as a calm space for our guy.  Previously we hung curtains around the bottom of a bunk bed and put in special lights.screen-shot-2016-12-04-at-10-33-41-am

Bath items – GelliBaf, foaming bath soap, lavender bubble bath, bath cups with different holes in the bottom

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Fidget bag – lots of options for creativity here, great stocking stuffers (this is only one example) or maybe a fidget pencil case for those who have trouble sitting still in class.  Pencil fidget toppers or a chew buddy necklace also can help.

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Clothes – our guy loves compression shirts and tights, anything with spandex and without tags.

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We haven’t bought weighted vests or expensive weighted blankets, but we have used lap pads and weighted warmers.  This one looks fun.  We used to have vibrating bug massagers and Ps and Qs for chewing.

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Always wanted a body sox, but suspect we waited too long.

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Safety mirror for those who tend to make things sail across the room.

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Galt marble runs have been a favourite in our house for years (though marbles do fly, and should be avoided for kids who put things in their mouths).

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Hands-on is great.  We have had success with magic sand (though be vigilant, we heard one family had a struggle when it was washed down the drain), play doh – our latest is the ice cream shoppe, play foam (but beware it’s very sticky).  We also have in past just given a huge plastic bowl so he can mix ‘concoctions’ in the kitchen.

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Also spinning paints, spinning markers, Spirograph JuniorGears! Gears! Gears!  (Yes, there is a theme here…)

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Disco lights (we have many, but not this particular one). A bluetooth speaker with LED lights was also a big hit, worth checking out if you have technology.  There are many options for inexpensive sensory lighting, such as this one.  Have a google.

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Jumping items – a must when our guy was younger – sadly our garden isn’t big enough for a trampoline these days.  But a kiddie trampoline for the young ones would be top on my list (there are sturdier ones from disability aids websites).  Skipping ropes are great too, and cheaper.  Exercise balls can also be great for home use, having a kid just sit on one and watch TV or when doing homework can really help give that little bit of input – but in our house they fly too often for comfort.

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Swingball – endless hours of entertainment

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Books – we have found that our guy has a different relationship with books than our elder son.  He does better with hands-on books, like the Usborne Lift the Flap books (which actually contain some higher level info but more easily accessible for him, in little bursts). See Inside Your Head was one we used to help him start to understand his brain (though it’s not FASD related, we found it useful).  (When he was smaller all the touch and feel books were essential, like the That’s Not My… series.)   DK Eyewitness books for kids are also a hit, again very visual and short bits of info. DK Eyewitness classics are also a great way to introduce literature – like the other DK books they also have short bits of info and lots of visuals around the main story.  A Christmas Carol might be a timely one. (Some of these are out of print.  We often buy used books, we call it recycling.)  We also have had success with books based on movies like the Spy Kids or some of the Disney stories – the movie visuals in the books seems to help him focus.

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Things scented.  Scented markers, scented pencils, scented stickers, scented bubbles, and the latest craze – Num Noms (ridiculously expensive but for a kid that loves smells I can see why he likes them).

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Time timers – these are great – for kids who can’t innately understand the difference between 5 minutes and 5 hours, they show how much time is left visually.  (We sent some of these into school.)  There are some cheaper versions or the larger more expensive ones. We also tried a clock that changed colour every hour, but he hated it in the night (he needs a pitch black room to sleep.)

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Some traditional games – Bingo! with a spinner.  Candy Land is still a favorite – (based on moving around by colors) and also Story Cubes, Spot It/Dobble.

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Learning games – We’ve had recent fun with Lazer Maze, Gravity Maze, and Snap Circuits electronics kits (that we have often found used on eBay).

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Lego – our guy never got into Lego until we got some Lego Friends.  We think the traditional Lego people were too abstract for him.  And then he loved the Lego friends performing sets.  There is always some Lego set that would appeal to most kids.

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Technology – our guy has a love/hate relationship with technology.  We have found some things work better than others.  The entire LeapFrog range was always top of our list, very sturdy, good educational – and the toys go from very young phonics magnets up to a LeapPad (which he still uses).  We have had good luck with the Amazon Fire tablet for kids, (though we got it on sale). Same with the  voice command Amazon Alexa speaker (less to break), which we also got on sale.

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Topping this year’s list?  Bean Boozled 4th Edition party game (these come in smaller packs as well).  For those who don’t know, bean boozled jelly beans have two flavours for each colour – one pleasant and one disgusting.  For our sensory-seeking son, getting a small pack of these is often a highlight on a Saturday – he films himself trying them and spitting out the horrid ones.

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He’s also desperate for Pie Face.  I think I see why.

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There are so many things he wants in the ‘made for speed’ category.  He has a scooter that sparks, that was a highlight of last year’s Christmas.   Some of his other demands we consider too deadly to consider: hover boards, skateboards, Heelys, etc.

This seems like a feeble attempt to lay out some ideas.  The main message is to ‘think sensory’ when considering toys.  Don’t try to push them to a new level if they are not yet ready.  Puzzles, dress up clothes, dolls – lots of those items that little kids like big kids might still like and need.  It takes some shedding of parental expectations to find those toys that will help them grow but also provide fun rather than frustration.

If you have other ideas, please feel free to share them in the comments section below.

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

Extended Family, FASD, & Halloween Happiness

extended-family-can-make-halloween-fun-for-a-kid-with-fasd

By The Auntie

I currently have two pumpkins sitting in my kitchen, one of which I will help my nephew carve when I have him over night on Wednesday for another of our sleepovers. I have never carved a pumpkin with him, don’t know if he will enjoy it, but this we will discover.

For the last couple of years, I have found myself at home for Halloween and I LOVE Halloween. I have fond memories of eating silly, “disgusting” food, dressing up and apple bobbing as a kid.

Nowadays, it’s all about the trick or treating and no-one seems to do the traditional games any more, so I decided that I was going to introduce the kids in my family to a couple of them.

And yes, I dressed up. I like dressing up. The first year I was the only adult that dressed up. Last year there were more.

So here’s the recipe …….

  • Make a finger food buffet and give it Halloween style names.
  • Make your own costume – a sheet for a ghost; a ripped T-shirt and some face paint makes a zombie; black clothes and green face paint transforms you into Elphaba – use your imagination and it doesn’t have to cost a fortune.
  • Buy some apples.
  • Buy some doughnuts and string.
  • Put the apples in a washing up bowl full of water and bob – I can promise you that the adults WILL get competitive!
  • Eat the finger food – this has to be done before the doughnuts – use the doughnuts to bribe little people into eating some proper horror food.
  • Tie the doughnuts on the string. The contestants lie on the floor and have to eat the doughnut from the end of the string which is held sympathetically by another contestant.

At some point in the evening they will want to fit in trick or treating, you fit it in where appropriate.

“So,” I hear you say, “That all sounds like fun stuff to do – why is The Auntie making a point of it?”

Festivities are always a trial for families of kids with special needs. In the frazzled environs of day to day life, planning anything more than managing to get out for some trick or treating is near impossible and our kids with FASD can feel let down, left out, or overwhelmed.

By giving up a few hours time prepping some food and organising a couple of silly games, you can give your families affected by FASD an evening of smiles, silliness, rest and respite.

Even if you don’t want to do the food bit (you could always ask whoever is coming to bring a contribution and have a pot luck dinner) you can still give your families a moment away from the everyday trauma. The new school year adjustments are ramping up. You can give them a tiny oasis away from that.

Yes, it might only be a couple of hours. But, for our families, those occasional moments may be enough to knock a couple of straws of the camel’s back.

Happy Halloween!


P.S. from FASD_Mum:  What The Auntie may not know is how many challenges her Halloween parties have solved for our son with FASD.  His sensory issues make walking around during cold nights wearing costumes and masks a real nightmare for him.  He gets freaked by some (most) of the Halloween decorations, especially at houses where there are decorations with loud noises and surprises.  He is intimidated to walk up to people’s doors, takes too long to choose which candy he wants … it becomes very overwhelming, very fast.  He is starting to feel a bit out of place, at the age of 12, when so many of the kids are much younger, but emotionally he is still at the age where he wants to participate.  Too much trick or treating yields too much sugar, which has its own host of problems (if there is candy in the house, it will be eaten until it is no longer there – our guy is not one to pace himself and it is impossible to hide it away, candy-related meltdowns are guaranteed at this time of year).  In many ways he is just as happy staying inside and giving out the treats as he is knocking on doors.

The Auntie’s family-focused and extremely fun but low-key parties have been perfect for our son.  They are a sensory treat for him (bobbing for apples!).  Most of the activity is at her home, with a few visits to trick or treat at the homes of neighbours who know the family well.  And the real joy is that in her enthusiasm to do something she loves, she hasn’t even realized just how perfect these parties have been for our son with FASD. 

Spending time with a child with FASD can be great fun, and it’s all the more exciting when another extended family member includes them in something that they really enjoy.  Sometimes only a few modifications are needed, and the kids build such positive memories and family relations are strengthened.  Maybe this particular kind of party would not work for all kids, but I would bet there is some way to plan just an hour or two this Halloween that would really make a child light up with joy and give the whole family something to feel good about.

And then, of course, if Halloween is too soon, there is also Bonfire Night…

Further reading:

Halloween Ideas for Kids with FASD

Acceptance for this All Hallow’s Eve

 

Adopting a Child With FASD

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

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

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

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

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

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

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

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

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

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

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

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.

Wrestling with “Death” is Tough for a Kid with FASD…and His Parents

we-love-a-child-with-fasd-5By FASD_Mum

I spent yesterday willing our dog to live, convinced it was succumbing to the heart problems that are common to his breed.  I dearly love the dog, don’t get me wrong, but first and foremost in my mind was how inconceivably impossible it would be to explain to our 12-year old with Fetal Alcohol Syndrome if something were to happen to his Christmas dog.

This dog has been perfect for our family from day one.  Our son wanted a dog desperately.  He wrote to Father Christmas specifically for one that wouldn’t “bark, whine, or whinge.”  Father Christmas had sent him a letter explaining that dogs are special gifts, and involved special procedures.  Like a scene out of “Miracle on 34th Street,” this Christmas magic seemed predestined – there we were meeting Noel (amazingly, that was his name), a Cavalier King Charles Spaniel that had been rescued from doggie-death-row in Ireland.  Miracle of miracles, this dog was silent (just like our son had been when we adopted him).  He was calm, unflappable, and oh so friendly.  He was instantly one of us.

They bonded very quickly but we realized early on that our guy was not going be able to be the main carer for the dog.  We had to make adjustments to expectations as our house has grown more chaotic over recent years with some escalating behaviours.  We no longer leave Noel sleeping in our son’s bedroom because despite how sweet it was to see the two of them sleeping side by side, the mornings were unfair to Noel, when our son would be too hyper before his medication kicked in and the dog would get too wound up.   Sometimes we have concerns that such a small dog might get hurt during a meltdown, so we are always aware of where the dog is, and often shift him to different rooms if things are heating up.  Sometimes the dog also ramps up the moment, as he has certainly learned by now how to bark, and his eagerness for walks makes our front door hallway a scene of mayhem sometimes. (This, because our morning routines are not routine any longer.  We cannot know on a given day if our son will go to school on time, if we can get him to walk or if he needs to be driven, etc.  So the dog never knows if he will get an early walk on a given day and puts in his vote strongly at just the time when we do not need more noise.)   Despite his confusion, the dog is still uncannily good-natured, and remains a favourite at the school gates.  Our son proudly shows him off, telling his friends for the umpteenth time that this is his dog, and his name is Noel.  Noel went missing once – that night was one of the longest around here in a very long time. Though we found out later he had tucked up safely in a shelter all the while, that fear of losing him was etched into our son’s being.

As our son gets older, his anxieties are deepening, or at least he is able to vocalize them now.  He lives in fear of Noel disappearing again.  Every walk, every time the door opens, our guy panics, lunges for Noel’s collar – sometimes tackling him with a full body hug.  We had been to a field in the two days prior to this mystery illness.  Our son has been extremely unsettled lately-partly due to a cold but more so due to increasing challenges at school.  He was panicking as the dog would sniff along the tree line, worried he might disappear into the overgrowth.  Of course, needless to say, as I was dealing with one of my son’s outbursts, the dog did in fact wander into the woods.  Sheer distress overwhelmed our guy.  The dog happily came when we called, tail-a-wagging, but my son was devastated by the experience.  The next day he was almost crying when I let the dog off the lead, begging me not to let him wander away.

So, no, I could not contemplate a world in which this dog would leave us so soon.

Uncharacteristically, the dog didn’t budge from one spot on the couch for more than seven hours.  He was barely able to open his eyes when I called his name, giving a half a wag of that tail that usually never stops.  I could see the worry in our older son’s eyes.  I probably should have called the vet sooner, but I was becoming convinced this was heart failure, though I didn’t voice that, and I doubted there was anything they could do – nothing that we could afford anyway. My dad had heart problems.  Our minds do strange things sometimes.

I admit it, I was worried.  Very worried.  And yes, I literally curled up around him for more than an hour – maybe closer to two – hoping my presence next to him might give him strength, pretending to be part of the pack.  It may sound silly, I am not necessarily one of those people who invokes Mother Earth, but I was running on instinct, and I believe in the power of love.  It was all I could think to do.

As it turns out, antibiotics have more power in this case, as an evening visit to the vet demonstrated.  But that was only after a very long day.  My son had a meltdown after school – his reaction, I think to the dog being unwell.  A good friend had come by to help calm the scene (my husband is traveling, I am flying solo, we all have colds, it has been a hell of a week – and when I say that, I mean it).  My sister-in-law (the other Auntie you don’t hear so much about but who is equally supportive) had come by to give a second opinion on the dog.  She was the nudge I needed – she literally dialed the vet and handed me the phone.  She drove us over, and was another set of ears while my overwhelmed brain was catching only half the words.  It’s not the dog’s heart, which is a huge relief.  There is some sort of lump in his throat, but not something stuck in his throat.  It’s unlikely it’s the c-word, though we won’t know for certain for a while.  He had a raised temperature, so we are thinking it is some sort of infection.  The vet dosed him up with painkillers and antibiotics, and I have literally been slowly spoon-feeding this dog while whispering gentle encouragement.  Not yet, sweet dog, not yet.  We need you.  Our son needs you.  Not this week.  Not while our guy is struggling so hard.  Not now, please, please get better.  Willing this dog to eat.  Willing him to recover.

For some reason our son’s English class is studying the Titanic.  For a kid who has a morbid and not particularly healthy fascination of floods, storms, disasters – this story has captured his imagination in a way few subjects at school do.  He is watching and re-watching clips on YouTube, he plays the song over and over again – having learned about its composition.  He asks Siri how old Leonardo DiCaprio was in a given year.  And he ponders mortality.  In the darkened bedroom the other night, when I thought he was asleep, I heard, “I would so totally die if I was on the Titanic.  How old are you when you die?  I miss Grad [his grandfather who died several years ago].  How old was Grad when he died?  What year was he born?  What year was Bebe [his vivacious grandmother] born?  What year were you born?  What year was Daddy born?  What year was I born?  What about my brother?  Why do we die?”  Trying to overcome his inability to wrap his head around time and math, he was struggling with some of those existential questions we all wonder about, but in his own unique way due to his FASD.  His fears were magnified by the fact he could not quite grasp these concepts.  He was in a loop, going over and over and over in his mind, trying to understand when and why we all will die.

When my sister-in-law and I headed off to the vet with the dog, our friend took our son to her house for a sleep over.  We are so lucky to have such a support system, this impromptu change of bedtime plans on a school night could easily have sent our guy into orbit, but he was great (though I predict I will pay for this today after school).  Our friend and her young daughter who is one of our son’s few true friends are lifelines.

So, thankfully, our guy did not see the dog’s massive drooling, his inability to eat food.  Our son did not hear about the lump.  He didn’t see the food scattered all over the floor because our dog cannot eat properly yet.  Hopefully by the time he comes home from school, the dog will have recovered to such a point that we won’t trigger the very worst of the fears.  And thankfully the dog does seem better today, he has more of his sparkle back.  He has eaten more, though he has not left my side.

Our son is a stress sponge.  Even if he cannot name it, or even fully understand it, it was not a coincidence that all of those things from his bedroom were thrown down the stairs yesterday.  It was not unrelated.  Sometimes my head cannot handle it all, especially when I am feeling under the weather myself.  My cold has deepened, and yes the drool had me gagging over the toilet, such a glamorous life sometimes!  How do we – do I – juggle all of this:  sick kids, sick dog, a house that is a disorganized mess and getting worse (knowing how badly this affects our son), stresses over work, stresses over the level of stress, trying to switch our son to a special needs school, so much paperwork, so much to remember, new appointment letters coming through the door at rapid rates, phone calls we have not yet returned, requests for media interviews as we become more vocal about all of this, so much of life’s minutia that we seem to miss as we deal with Big Issues Every Single Day…???

The pressures are immense when trying to help our son navigate this world.  Some things we can smooth over for him.  Some things we can adjust and adapt to the way his brain works.  Some things we can redirect or hide away.  But there are other things we simply cannot change no matter how much we would like to ‘fix’ them.

For me, I am a better person for learning these hard lessons.  I know that.  I own it.  My ego has taken more than a few hits in the years of parenting this child (both kids, really, but this blog is about FASD).  I am humbled time and time again to learn that while there are many things I can do to help, I cannot alter the fact that our son will experience this world in a much harsher and harder way that I would ever have wished for him.   The adults with FASD from whom we learn so much always say that he will have to live his life.  A hard thought, but they urge us to remember that these early years and the values we live and teach will always be inside him helping him to find his way.  I know that.  I do.  I know that.

But, damn.  As I laid there on that couch yesterday, wrapped around this tiny, sick, furry, fluff ball pretending to be mamma wolf or something, I wasn’t ready yet to have to tell our guy, during one of his worst months ever, that I couldn’t fix his Christmas dog.  Not yet.  Fingers crossed, not yet.


P.S. – Here is a clip of our son and his Christmas dog from a year ago…to show just how strong the bond is between them….I  know it will make you smile.  

He’s Too Special to Let Fail

we-love-a-child-with-fasd-3By @FASD_Mum

Special.  This one word has been swimming in my mind lately – in and out of focus, but always there.  Sometimes when it surfaces, my heart jumps with optimism.  Other times it makes me stop in fear. “Special” can mean different things in different contexts.

Our guy is suffering in mainstream secondary school this year.  No, he is not having the horrible kind of exclusion and belittling, uncaring experiences too many kids with FASD have at schools that don’t cooperate or engage with kids who have complex profiles.  On the contrary, our son has very able and willing teams of people trying their best to integrate him into mainstream education.  This is after all the law.

And yet, his chances of success have been crushed by massive far-reaching radical changes in national policy.  Here in the UK changes to national standardized tests – called GCSEs – are making it impossible for wide swathes of kids to succeed in school.  Now all students whether they are going to Oxford or seeking a manual vocation will have to take the same tests (previously there were other tests for those kids who struggle more).  Revamped content makes these GCSEs even more difficult and the policies now require that if a child fails the math or English GCSEs, he or she will have to re-sit the test time and again until they pass.

In US terms, this is kind of like requiring all kids to take the SATs, whether they are going to university or not, and forcing them to take it again and again until they get a certain score. We were told that in our son’s school there is deep, deep concern that he and others like him will not be able to pass these tests.  So, we are looking at years and years of dragging him off to school to sit in classrooms where none of his teachers really expect him to pass tests that are the focal point of all that is being taught – years and years of setting him up to fail.  Seriously?

He is already drowning on stress.  We are well aware of the statistics that show how kids with FASD brain injury are very susceptible to secondary disabilities – mental health issues, addictions, high rates of suicide, risky behaviors, incarceration, etc.  There is no way we want to put too much pressure on him in these years.  We can’t envision deliberately setting him up for failure.  What kind of sick system does that to vulnerable kids?

At the very time he needs more creative teaching to engage him, classroom teachers are becoming increasingly limited in what they can do.  One leading specialist asked us, “Your son may have a t-shirt that says on the front, ‘I was included’ – but will it say on the back ‘I was educated’?”  He said kids with FASD can learn, but the education has to wrap around them.  He said too often kids with FASD sit at the back of the room and watch others get educated.

That conversation struck home.  It went straight to my momma bear heart.  It rang too true.  We don’t want that for our guy.  The major complaint we hear from our son about school is that it is “boring.”  The way the classes are running, he is not able to access the information and it is getting worse as the teachers are feeling more pressures to teach to this changed regime.  Despite lots of suggestions from the professionals that have been engaged to advise the school on how to meet our son’s needs, on any given day in any given class it is too hit-or-miss as to whether or not all the strategies are being used by harried teachers to support his learning – teachers who themselves have had only limited education on how to teach kids with learning disabilities.

So – we have decided.  He will go to a special needs school.  We are still digesting the word “special.”  Still coming to terms with the missed opportunities and dreams that won’t pan out in a mainstream setting.  We are having to re-jig the way we view our son’s next steps.  We are, if I am honest, mourning a little.  We are mourning for loss of our dreams – the dream of inclusiveness, the dream that if we try hard enough we can carve out a space for him among his peers, the belief that society really does want to be inclusive.

Despite heaps of goodwill from the leaders of the school he is in, and despite every effort on our part, we have decided in this new educational environment our son does not stand a chance in mainstream school.  He is one of those kids in the gray area.  Some students need a different environment to be able to access education at any level and it is good that appropriate separate provision is available.  Our son is in a kind of no-man’s land.  Supported, his test scores are probably too high for a special needs school.  Unsupported, he fits.

Growing up in the USA, with its imperfections but lofty principles, every ounce of my being is conditioned against segregation.   But here we are.  Because of his disability we have started the process of segregating our son.

People react badly when I use that word – segregation.  But it is what we are talking about. We have spent a decade in our hometown working hard in many ways, on many levels, to carve a space for our son into this town.  We have been motivated by the conviction that “it takes a village” to raise a child.  It has been a consciously forward-looking strategy.  We know our son will always need those around him to understand and support him.  Someday we won’t be here, and we want those others in the town to know him and understand him.  We give to our community in hopes our community will give back to our family too.  That’s how a caring society functions.

Not one teacher, not one administrator, not one politician, not one educational or medical professional can ever have tried harder than my son to make this work.  Most of them have never come close to trying to understand his dreams and his hopes, to see just how truly special he is – in the proper sense of the word.  This boy is amazing.  I am an in awe of all that he is and all that he accomplishes despite having a brain with scrambled neural connections that make every single day of his life a struggle.

We need more compassion in this world.  We need more reassurance.  We need more people willing to take time out to just see the others in the room with them.  I hate the idea that because some bureaucrats in Whitehall have issued their decrees about standardized tests that in reality means our son now has to go behind a wall.  That he has to be segregated in order to have a chance at a happy adolescence, a chance to be able to have some ‘wins’ along the way.  I cannot believe the choices come down to this – planned failure or segregation.

It is not the kind of society I want.  But our son is not going to be a casualty in this nastier and harsher school environment.  He has been the canary in the coal mine too long.  The System has nearly sucked all the oxygen out of his fragile self-confidence.  We can’t let his spirit suffocate.

So, we will take him away from all that he knows, all those children he has grown up with for the past decade, his brother, his cousins.  We will entrust his creativity and his desire to learn and grow to another set of educators, with different skills, in a more flexible environment.

After days of pacing, wrestling with knots in our stomachs, feeling a deep, deep sadness, we toured local special needs schools.  There is one that looks amazing – should he get in we would be quite happy to do all we can do to help him flourish there.  But we know that even there our son may encounter a new set of challenges as he tries to interact with kids who have deeper communication difficulties than he does.  There is no guarantee moving him from mainstream school will be a success, and we are well aware there will be no going back.

However, this other school may allow him to be a leader.  For the first time ever, he may be a kid who is more capable than most of his peers.  It might be fantastic for him to be able to relax more and to explore his strengths in a more tailored setting, to learn the way he learns best, through music, dance, tactile experience, rather than drowning in a barrage of words in large classes in an overstimulating setting.  Maybe this other school can help set him up better for the next steps he will make.  We have started to allow ourselves to feel hopeful.  Maybe, just maybe this might be exactly what he needs.  That said, we are wary.  Time will tell if this is the right decision or not.

So, yes, we are moving our son to another setting.  Your kids won’t have to see him day to day.  You won’t have to explain to them why he is a bit different.  You won’t have to imagine your kids sitting at a table with him and wonder if that is helping or hurting your kids’ education or skewing the school’s ranking based on test scores.  You won’t have to tell me how your kid finds my son “irritating.”

But dear society, believe me, just because you are pushing him away, you have not seen the last of him.  He will continue to show you just how truly special he is.  Watch this space.  He is of this village and always will be.  We will find ways, create ways if need be, to keep him integrated.  We know there are many good and close friends in this community who will make extra efforts to stay a part of his life.

Shame on us all that it has come to this.  And for what?  Some misguided belief that reverting to the exam system of half a century ago is the answer to today’s challenges?

Yes, you bet I am sad.  But, don’t worry, I will rally.  We will be positive when the time comes for the switch to a new school.  We won’t look back.  One thing we have learned about FASD is that it is always possible to hit the ‘re-set’ button.  Our lovely, talented son has taught us about the great and inspiring power of fresh, new days.
 

Extended Family – Please Support, Don’t Judge FASD Parenting

extended-family-of-those-with-fasd-2By The Auntie

Never judge an FASD parent until you have walked a mile in whichever shoes they have managed to get on their feet today.

“All that kid needs is a bit of discipline”

“Why is that woman on the beach just popping seaweed instead of stopping her son swearing at the top of his voice?”

“Have you tried controlled crying, the naughty step and Super Nanny techniques – if you persevere, those methods will work”

“Well it was your choice to adopt. You knew what you were getting into”

I bet you have heard something like this said about the FASD parents in your family. You may have thought similar yourself (go on, admit it, you have. I will admit it, I thought it). I went along to the latest FASD Support group that my brother and sister-in-law run and I listened to reports of the above attitudes.

And I listened to how some of them have been abandoned by, estranged from or criticised by their nearest and dearest. Large, seemingly irreparable, rifts often appear in previously close families directly as a result of the adoption of an FASD child. Extended families often observe FASD parenting skills and can’t understand why their son/daughter/sister/brother “lets the kid get away with, what is basically, just naughty behaviour”

So let me ask you something.

Don’t you think that if normal parenting skills worked, they would use them?

Because the simple fact is that normal parenting skills simply do not work with an FASD child.

They just don’t.

And no, actually, most of the time these parents didn’t know what they were getting into because, in the UK, we are playing catch up. I have the opportunity in my work to come into contact with many many SEN and PSHE teachers and over 90% of them have never even heard of FASD.

I would bet that your FASD parents spend every waking (and some sleeping) hour researching skills, techniques and coping methods that will work for their child – every FASD child is different and there is just no way of knowing which bit of their brain was damaged at which point, or points, of the pregnancy, or what is going to work for their child on that day.

So I would like to make a plea to all those family members who have thrown their hands in the air in frustration and walked away in the past. It is never too late to say ……

“OK, I think you are doing it wrong, but am prepared to let you try to prove why you are doing it right. Or at least prove why normal parenting won’t work”

Please.

FASD parents parent differently. Not because they want to. Because they have to.

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More from The Auntie is available here.