Dreamcatcher v. Mr. Orange Sun

dreamcatcher_usethis

By SB_FASD

Our son with Fetal Alcohol Syndrome doesn’t have the severe sleep problems that affect so many with FASD.  Well, that said, although he does sleep for up to 10-12 hours a night he often doesn’t want to go to sleep and has trouble falling asleep even with the help of a low dose of melatonin.  His pre-sleep routine can take up to 3 hours.  In part, it’s because he actively tries not to sleep.  At times, he fights it.  For this, we can thank some clever person who in his or her wisdom decided to post on YouTube a revamped version of the Teletubbies, where George W. Bush’s face was in the middle of the sun and he lasered and killed the Teletubbies with his eyes.  Our son saw this many years ago, and to this day he still fears ‘Mr Orange Sun’ will show up in his dreams.  And he does.  Frequently.  It is a recurring and terrifying nightmare for him.  As he is growing older, he also tells us about other dreams – kids in school being mean, someone yelling at him.  But none have the power of Mr. Orange Sun.

If you think about it, dreams are really abstract concepts.  It must be so confusing for a kid who can’t handle the abstract to make sense of why these images relentlessly parade through his head at night.  I would want to stay awake too.

He has his own strategies for coping.  He believes if he falls asleep facing the wall, he will have nightmares.  If he sleeps facing away from the wall, he will have good dreams.  Sleeping on his back facing the ceiling means no dreams.  Recently he latched onto the idea of getting a dream catcher.  By recently, I mean within the last year.

We hesitated.  He takes these things quite seriously.  He heard once that coconut oil can make your hair grow faster, so when we got him a little bottle of coconut shampoo he had us measuring his hair after each shampoo.  He got really frustrated to see it wasn’t working.  For a week he had Sharpie marks all over his arms trying to see if the flash on a phone would leave a mark.   He doesn’t understand why Justin Bieber has millions of fans on YouTube and he doesn’t when, just like Justin, he posted his videos and asked for people to ‘like’ them.  He thinks if you call Annabelle you will hear her (again, thanks to YouTube, I hope you don’t know who Annabelle is – the spooky looking doll that seems to have supplanted the Lady In White we used to try to talk to during kiddie sleepovers).  You may be thinking “all kids go through these stages” and yes, they do.  But not like this.

His brain is literal.  Extremely observant.  But not flexible.  He is not able to rapidly redirect or refresh the way he looks at something.  If he has it in his head – as he does this weekend – that a raw egg is good for shiny hair, we can be sure that at some point this weekend, this will be tried. Our choice is to help him with this experiment, redirect to something more suitable (though often that is a tough sell),  or pick egg shells out of the bath yet again after he surreptitiously gives it a try anyway (yes, it has happened before, some of these ideas are cyclical).  We are learning to go with the flow.  If his experiments are not too over-the-top, we facilitate.  We teach he just needs to get our permission first.  We will help him.  Some of his ideas are not ‘wrong’ or ‘bad’ – they can be tiring and messy – but there is almost always a kind of logic behind them, and yes, they also can be quite fun like the foaming soap and whipped cream challenge, the messy play challenge, or his sensory-rich birthday extravaganza (not for the feint of heart).

It’s this same persistence/inflexibility that means we have learned to accept that if there is any candy in the house or any ice cream, he will eat it.  He will fixate on it, and until he knows it is gone, we will not be able to deter him.  Well, we could of course, but we have learned it is simply not worth the fight and chaos that would ensue.   As I type, he is in the freezer, getting his third Twister of the morning.  My bad.  I should never have picked these up in the shop yesterday.  I wasn’t thinking it all the way through.  I saw them, remembered he liked them, not really thinking of how many were in the box.  No, I am not going to battle over Twisters this morning.

None of this is to say that our guy cannot learn.  Quite the contrary.  He is constantly learning, gleaning information from many sources, seeing things I don’t even notice (what ways the wipers go on the cars is one that still boggles my mind – some do go left-to-right, others right-to-left).  What helps him learn is consistency, repetition, finding those moments when he is receptive to input, those times when he can meet me eye-to-eye, and we can connect.  When we can use some of his other senses to help imprint some bit of information onto multiple parts of his brain.  We model the behavior we want him to emulate.  We reinforce, reinforce, reinforce.

And then, one day, magic.  He does something that gives us great hope.  This happened a couple of nights ago.  There was a problem upstairs with phone chargers (he was using my phone since his was long ago crushed and the Amazon Fire Kids tablet of my last post has still not been replaced, at least he doesn’t yet know it’s been replaced as we let that ‘natural consequence’ sink in for a few more days…). My husband went upstairs to sort it out. Our guy came downstairs on the couch with me and the dog.  He very consciously reached to the dog for reassurance. He explained clearly that there was a problem, the charger wasn’t working. We heard my husband up there expressing less-than-calm vibes. (Occasionally it can be good spectator sport to see my husband losing to technology.  Sorry dear, but it’s true.  But not when it’s nearly bedtime, and the little one is possibly on the verge.)  My husband was getting audibly upset, and increasingly frustrated.  We could hear it clearly.  Our youngest, who had the dog on his lap, looked at me eye to eye and said with compassion in his voice, “I think you should go. I think he needs help.”

Wow!

That may sound small. But it was huge. He wasn’t defensive, he wasn’t upset by the confusion over the charger.  He wasn’t escalating in step or ahead of my husband’s escalation. He was totally in control of his own skin.  He was telling me he didn’t need me, he was okay.  Daddy needed me more and I should go. HUGE. I said that was really good that he pointed that out to me that Daddy needed help, and I would of course go and help Daddy with his problem. And I thanked him for thinking about Daddy, since we know he has been ill this week.  And all this was on a night when our son was deeply disappointed that the snow they SAID would come didn’t materialize.  He was in control.  And while in control, he was loving and attentive to the needs of others.  HUGE win.

(And, yes, the charger isn’t working properly because our guy fiddles with it when he is using the phone, but that is the risk I take in letting him use my phone.  He is not doing it consciously.  That was a conversation we had later, quietly. He understood.  He’ll probably do it again, but he did understand.  Maybe someday, he will be able to stop doing it.)

It can creep up on us, this idea that he is learning.  He is observing.  He is making progress.  Sometimes it’s not easy to remember – like yesterday when we had a roll of toilet paper torn up and thrown downstairs.  Six, seven months ago, we might have had a huge scene – broken toys, smashed doors after that.  Last night, we contained things and within 10 minutes we were up in his room, in the quiet and dark.  I was giving him a foot rub and ignoring the words until they too calmed down and we could get to the business of deciding what food he might like to eat.   We are not perfect.  We are flawed.  My every instinct is not that of a saint, believe me.  I say things in the moment that I wish I hadn’t, things I know I should not, things I know that don’t help.  But we are able to grasp at the progress and hold onto it.

When we least expect it, we see it.

Back to the dreamcatcher.  He was so hopeful when his dad nailed it to the wall above his bed.  Our guy showed him just where to put it – not too high, not too low.  The first night went well.  But the second morning he woke up discouraged.

“I had a bad dream.  The dream catcher didn’t work.  I think I need a bigger one.”

He doesn’t ever give up, our guy.  Inside that bundle of energy that is his powerful and amazing body, he is at his core an optimist though he may be wrapped up in layer after layer of anxiety and doubt.  Somehow he faces his every day – no matter how confusing or overwhelming or terrifying it can be – he faces ever day anew.  We call it his ‘reset button’ and it is one of his greatest strengths.  It is one of the gifts he has given me, a reminder that within us all we have this ability to start over, to try again.

 


Bed times and pre-sleep have long been an issue for our son.  Looking back at those pre-diagnosis years and our lack of understanding makes me cringe.  And yet, he has had nowhere near the troubles with sleep that some with FASD have.  For more about sleep and FASD have a look at these links:

Sleep – information and strategies from the FASD Network of Southern California

Strategies Not Solutions (one of my favourite parenting booklets out there) from Edmonton and Area Fetal Alcohol Network (EFAN) (see esp. p 34-36 on sleep)

Sleep Problems in Children with Fetal Alcohol Spectrum Disorders, Maida Lynn Chen et. al. J Clin Sleep Med. 2012 Aug 15; 8(4): 421–429.

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Why a Broken Screen Can Make Me Feel Good

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sensational Media Hurts Those With FASD

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

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

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

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

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

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

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

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

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

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

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

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

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

“Trash begets trash that gets circulated around.”

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

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

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

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

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

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

“The genetics always came out eventually.”

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

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

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

Britain likes to think it is a caring community.

So, step up.

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

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

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

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

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

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

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

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


Please see our resources section for more information and links.

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

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

Ten Tips for a Holly Jolly Christmas – Inclusion, FASD & That Christmas Dinner…

copy-of-think-before-you-drink

By @FASD_Mum

Ho Ho Oh Boy – it’s Christmastime. Again.

For those in the greater FASD community who celebrate Christmas this time of year is challenging.  Feeling more like Scrooge than we care to admit, we jump out of bed each morning with an eye toward Christmases Past, Present & Future.

Christmas Past

We have suffered the defeat of Christmases past – when time and again expectations have been dashed by the hard realities of life for a child with FASD.  Flashing lights.  Sparkly tinsel.  Spinning decorations. Dropping pine needles.  Anticipation.  Confusion. Disbelief. Unbearable excitement.  Inevitable disappointment.

Ten Christmas truths as we have come to know them from Christmases Past:

  1. Not all kids can handle the idea of a big man dressed in red coming down imaginary chimneys.
  2. Some can handle even less the idea that it might not happen.
  3. Santa’s naughty or nice list can cause great anxiety for kids who have trouble controlling behaviour. In our house, kids know Santa gives points for trying.
  4. Schools have no clue how much toll those extra events can take on some kids. The lead up to The Day can be daily chaos for kids who need routine.
  5. It can matter greatly if a tree starts to shed its needles early. Last year our son panicked every day for a whole month.  This year we have an artificial tree.  (Still in its box along with all the other decorations, I might add.)
  6. Christmas light speed dials should be banned.
  7. That fact that it doesn’t snow in every town on Christmas Day can cause great distress for some kids who think Santa’s sleigh needs snow to land. This isn’t ‘cute’, this is a serious worry.
  8. Most toys have a half-life of joy measured in nano-seconds on Christmas Day.
  9. For some kids, sitting for that famed Christmas dinner is a mini-torture zone.
  10. The pressures on parents/carers to maintain calm for hours can suffocate the joy out of any lighted Christmas pudding.

There is probably not a parent/carer who celebrates Christmas with a child with special needs who does not put their head down on the pillow on Christmas night without a huge thankful thud that it is over for another year.  Who among us has not sworn we will never do it that way again….

Christmas Present

And yet, here we are, preparing for Christmas Present, ready to repeat/endure the same routine.

This year, please have a thought for families who may be struggling, those who need a change.  Those who see a train wreck coming and are asking in ways big and small for your help.

The weight of Tradition is bearing down on us, suffocating us.  We are already balancing as best as we can the demands in our own homes, let alone bringing our particular road show to others’ houses.  We desperately want to feel festive.  We want so much to have fun, to be reminded of what it is like to feel relaxed and joyful that it is Christmas.  But we too often feel alone, stressed, isolated, and perhaps depressed.  We are tired, even if we have plastered a happy smile on our face for the kids and for you.

Ten tips for helping a family with FASD through this holiday:

  1. Give them time to prepare – offer to take their kid(s) for a walk or out for hot chocolate, or for a sleepover one weekend before Christmas. They have some elving to do and really could use the time to feel the fun of it.
  2. Offer to help put up lights and decorations when the kids are out at school.
  3. Treat the parents/carers to a festive lunch one day while the kids are at school, before Christmas holiday madness happens.
  4. Plan to have a special activity with the kids during the holiday – plan ahead, let that be your present to the child. A movie, a trip to a soft play area, ice skating, a trip to a special pool – anything.  Believe me, the parents will worship you for it.
  5. Keep celebrations short – holiday marathons are not made for kids who sprint.
  6. If you are worried about ornaments breaking – remove them before kids with FASD arrive, do not let the focus of the day be everyone telling the kid to stay away from shiny, sparkly, intriguing things they are never going to be able to ignore.
  7. Ask ahead what the kids might eat – it is nowhere written that mac and cheese is banned from a Christmas table.
  8. If you know adults with FASD – reach out to them before Christmas, ask how they are doing, see if they need help planning or shopping. Ask what’s on their minds.  Some grapple with past traumas that would bring most of us to our knees.  Invite them over if they have no where to go.
  9. If someone you know struggles with addictions, don’t serve alcohol if you have invited them to your home.  Show respect.  At the very least be sure you have some fun sodas and non-alcoholic treats.
  10. Give people the space they need – have somewhere quiet ready in case a person with FASD needs to have a break, and let them go there without making them feel bad, without any jokes.  The pressures each feels are very individual, please be flexible and understanding and do not interpret their needs as a personal criticism.

Christmas Future

And then, there are all those Christmases Future.  As challenging as our past and presents may be we all have a wish for the future – to ensure other families can avoid having to face these challenges altogether.  The most important gift in the world is the gift of health.

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There is great pressure at this time of year to be ‘festive’ – to have another cocktail.  To toast a new year coming.  People make merry in lots of ways.

Statistics show that “December is the month when the highest number of babies are conceived and the month in which the highest amount of alcohol is consumed. (Office of National Statistics, 2015).  It is crucial therefore that families are aware of guidelines about the effects of prenatal exposure to alcohol and developmental risk for children so that they can enjoy the festive period more easily.”  (See the excellent article by Carolyn Blackburn, “Did You Know More Babies Are Conceived at Christmas Than Any Other Time of Year?”)

If you think you might be pregnant, if you are trying to get pregnant, or if you are having sex without birth control, remember, remember, remember it’s not just about this year, but all those years ahead.

The UK Chief Medical Officer says “The safest approach is not to drink alcohol at all.”

Here is a video by Lee Harvey-Heath, an adult with FASD who encourages people to see the world through his eyes via his Facebook Page (which we strongly encourage you to ‘like’) and other outreach.

 

One Final Thought

And yet, for all the angst, there still is nothing better in the whole world than to see a child’s face light up in that first magical moment on Christmas morning.

 

 

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

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.