Old Photos and the FASD We Didn’t See

Blog_OldPictures

By SB_FASD

My favourite Maya Angelou quote goes something like this, “I did then what I knew how to do. Now that I know better, I do better.”

But I can’t help but feel sad at times for what might have been had I had more information, more insight, and more understanding into our son’s struggles at an earlier stage.  I love the Facebook “memories” that pop up daily in my news feed.  But this steady drip of what we were doing 3, 5 or 7 years ago stabs my conscience.  Our son was adopted at 16 months.  He was not diagnosed with Fetal Alcohol Syndrome until he was 10 (he’s now 12).  He had lots of therapies over the years, don’t get me wrong, we were constantly in and out of every sort of appointment possible.  But no one gave us the overall framework to understand our guy’s struggles – we were micromanaging various issues.  No one said, “Your guy’s brain is wired differently.” No one gave us the lens to understand what we were seeing.

As a result, for too many years we just did not understand what he was showing us every day, in every way he possibly could.  How absolutely devastatingly frustrating those years must have been for a child who was struggling so hard to find his voice, to find his place in this world.

In one photo, it’s his second birthday.  We had just moved across the ocean – a huge world-shifting move for us all.  Our little guy is in a high chair, some cake with lit candles is in front of him.  He is beside himself crying, face red, I am down low at eye level – looking at him.  My face is confused, concerned, bewildered.  That photo most of all makes me want to cry.  It says it all – the love, the confusion, the chasm of misunderstanding, his world crumbling – burdened with our good intentions.

There are photos of him holding our fingers and then bouncing and bouncing.  We called it his ‘happy dance’ – since he was always happier after he did it.  He was showing us that he needed deep impact to feed his proprioceptive senses – that it helped him feel more centred in this world.

There are photos over years with a constant bump on his forehead from where he would bang his head – either walking directly into walls, or banging the floor (he also used to poke his eyes).  I now understand what one occupational therapist tried to explain about how when his system was so overwhelmed sometimes that a powerful pain signal would be reassuring, give his system something concrete to focus on.  (Why oh why did they not tell us how to avoid him getting to that point?  There are strategies, we know now, but didn’t know then….)  There’s another photo of him, age 5, smelling daffodils.  He looks more like a 2 or 3 year old, so tiny but we didn’t see that then – not just that his physical growth was lagging but also his social and emotional levels were so far behind other kids.

A video of him in a nativity play at school – perfectly in rhythm with the music, shaking some bells a wonderful teacher decided to give him so he had something concrete to do because he couldn’t stand still, couldn’t follow the story.  So obviously inundated with sensory overload but valiantly there in the mix of the other kids.  What were we thinking?  How do you balance that triumph of his overcoming a moment with the desire to want to cuddle him and protect him from exposure to such an overwhelming environment?  A video of him in a theatre group – perfectly in rhythm with the music from Grease, but so small, looking left and right to see if he is doing the right thing.  (He was.)  The remembering of moves was made easier because they were linked to movement and music.  A sign of his need for multi-sensory learning.

Picture after picture of him in mud, playing with bubbles, in dress up clothes that swirl and provide sensory input, in pillow and blanket forts that give him the needed feeling of safety and comfort.  Some photos of things gone wrong, moments of tensions that exploded.  Holidays where you can see the strain on all of our faces.  Tears at broken toys.  One incredibly heartbreaking photo of him sobbing with distress on his brother’s birthday, unable to understand why he was not getting a present too.  That time on holiday when he made a list of what we would do that day on a toy blackboard – showing us he needed structure we were not providing.  We thought it was cute.  We didn’t realise he was showing us how to stop him from drowning.

Photos over several years where we now see clearly the facial features of FAS and wonder why those medical and other professionals around us didn’t see it too.  Suppressing the bitterness, feeling just maybe they let him down most of all.

I would have done so many, many things differently for the toddler, for the young child.  I would not have forced him to sleep listening to music I chose, or in silence, or with a night light, or in pajamas that had feet in them. I would not have held him to stop his rocking.  I would have better understood his aversion to some foods was sensory-based.  I would have given him more structure, less input. I would have known that his brain was in danger of shutting down with too much input. Most importantly, I would have slowed down.  Changed the environment.  Turned off the background noise.   I would never have taken him into those stores where he always had meltdowns.  I remember my husband spinning a shopping cart with him in it as the only thing he could think of to try to calm our child in full meltdown in one store.  I was mortified but I see now why that probably worked.  (I also see we should never have been there in the first place.)  I would have taught our son differently.  I would have realized those times when we struggled to get him screaming into the car seat were times when we should have helped him calm, we should have reassured him, handled transitions more gently.  I would have listened to him.  I would never, never have put him into those time outs.  (Thanks very much, tv nannies – your strategies actually do not work for all kids.)

It would have changed my world, his world, our world to know then that he was not having tantrums, but in those heartbreaking, adrenaline-infused moments he was incapable of doing what we were asking him to do and we were the ones…WE WERE THE ONES who needed to chill out.

I didn’t know then what I know now.  This steady drip of pictures reminds me of that.  And I struggle with that guilt that bubbles just below.

But then, I look harder.  I also see hope in those photos.  I see the exuberance of a lovely spirit that was not crushed.  I see a child who felt empowered as a part of our family to keep trying to tell us what he needed in those ways he knew how.  I see a strong-willed boy who has always had to battle for himself, to find his own way forward in the face of every external pressure we and the schools applied.  I see a kid who has never given up, though the pressures of the world nearly crushed him last year.

I see a kid day after day, moment after moment seeking answers to why his world is so confusing.  I see a kid who trusts us still, despite what he sometimes says when impulses run faster than social niceties.  I see a fighter.  I see someone who can make it in this world even when the powers that be don’t ‘get’ him.  I see an amazingly brave and resilient soul who has so much to teach us all.

I can’t change the past.  I can’t take back those days of not understanding.  But I sure as heck can do better now.  And I am learning.  Constantly trying to better understand how to help guide our son into his future.  I am sure years from now I will look back at these days and wonder why I didn’t know more.  I’ll need to suppress my thoughts of inadequacy, ignore that simmering guilt, the fears that maybe I am not good enough for this job.

I guess all I can say is this: I’ll do what I know how to do, and when I know better – my dear son I can promise you this – I will do better.

In the meantime, keep shining.  Keep showing us the way.  And I will trust in you too.

__________

Note: For every person with the facial features of Fetal Alcohol Syndrome, experts say there are 9 or 10 others on the Fetal Alcohol spectrum – and while diagnosis was hard enough for our son who when finally tested  had 100% of the facial features, for others it is even more difficult – a ‘hidden disability’ that is way too often over looked.

For parenting resources, please be sure to check out the resource pages linked on the left-hand side of this blog.  Two favourites are here:

Information Leaflet for Parents and Carers of Children having Received a Diagnosis of FASD

FASD: Strategies Not Solutions

Respecting Differences in Those With FASD

blog_differentBy SB

“It’s OK to be different.” We say it without thinking, repeat it reflexively.  In a family with a child with special needs, it becomes a mantra.

But, do we really mean it?

I have been thinking about this a lot lately.  Our kids used to love the book by that title by Todd Parr.  It’s a great book, so colourful and accepting – all about the very many differences there can be in the people all around us.  I loved the book until the day our older son asked if it would be okay to have mac and cheese in the bath, like it says in the book.  Parental dilemma.  And yes, I swore under my breath many a time at the author’s folly – wondering why he had to include that page in this book.  To my credit, I didn’t say no.  But it took me months to serve up mac and cheese in the bath.  I guess, it’s okay to be different up until that point it when it battles against some deep fundamental hidden ‘norm’.   Yes, I eventually spoon-fed mac and cheese to both my kids in the bath. Miracle of miracles, they didn’t die in a swamp of germs.  It turns out I didn’t need to be so closed to the idea.

“It’s OK to be different.” Sure.  It is.…until that day when you discover your child is the one who didn’t get an invite to the party that everyone else in the class got invited to.

“It’s OK to be different.”  Yes.  It is.…until it’s your kid who is bottoming out on the standardized test scales and who can’t keep up with the homework other kids breeze through.

“It’s OK to be different.”  Absolutely.  It is.…until you are in the store and it’s your child having a meltdown because that toy or that candy you can’t afford/don’t want to buy/believe would be unhelpful for him is right there and he really, really wants it.  Now.

“It’s OK to be different.”  100%.  It is.…until you realise that whatever it is your child wants to wear that day out there in The Real World makes you cringe because you know it might draw attention to their usually ‘hidden’ vulnerability and people might disapprove. Or worse.

“It’s OK to be different.”  Yep.  No question.…until the specialist with degrees dripping off his wall stands there and tells you in even tones that your kid has irreversible brain injury and will need support for the rest of his days.

And then what?

What do you do when you hit your own internal prejudices and presumptions day after day after day as you try to parent a child who is, well, different?

That’s when you really begin to think hard about just how okay it is to be different in today’s society.  Because, different has a whole lot of levels.  And this big wide world is not always kind.  And life happens fast and furious and we don’t get a time-out to wrap our heads around all of this.  Pressures are intense.  It gets hard.  And then harder.

But the reality remains.  People with FASD are different.  Their brains are wired differently.  The communication between different parts of the brain is altered.  There is no amount of wishing or wanting or correcting or punishing or ignoring that is going to change the fact that a person whose brain was injured by prenatal exposure to alcohol processes information differently than someone with a so-called ‘neuro-typical’ brain.   This is fact.

“It’s OK to be different.”

➤So, when you have an appointment that you have waited months for, and your child simply cannot cope with the added stress, with being rushed out the door and starts screaming…what do you do?

➤When you just made that meal because you know all the foods on the plate are ones that your child likes, and they say they can’t eat it because someone breathed on it….what do you do?

➤When your child wants to show you for what seems like the 50th time that day a YouTube video that you have already seen 100 times….what do you do?

➤When your child is shouting obscenities at you, maybe throwing things, dysregulated because something went wrong at school and you still can’t figure out what it is….what do you do?

➤When you know your child must brush his teeth because the dentist said he is getting cavities, but he reacts like nails are being scratched on a blackboard…what do you do?

➤When you stare at another broken screen and you know he just couldn’t control the impulse to smash it out of frustration but you cannot believe this just happened again….what do you do?

➤When you go to reach for that treat in the back of the cupboard that you were saving for a special day, and you see little hands have been at it already or when you realise someone has squirrelled away that scarf you really like under his bed…what do you do?

➤When you are tired and lonely and at the end of your rope and your child does something for the umpteenth time that you have told them not to do and you are really irritated….what do you do?

➤When you just finished cleaning, and you turn around and see flour all over the counter from yet another science experiment and the eggs are all gone, having been smashed in the garden…what do you do?

➤When the school calls yet again and tells you your child has been “poorly behaved” and you have to go to the school…what do you do?

➤When it’s the middle of the night and your kid banging around in their room has woken you up yet again…what do you do?

I would suggest, unless you are up for sainthood, you forget.  You forget “it’s OK to be different” and frustration surges inside you.  Sometimes it explodes out of your mouth.  Sometimes the aggravation crushes you, weariness blinds you.  You forget that we are supposed to celebrate our diversity, we are supposed to live what we preach.  You forget it is okay to be different.

But…not every time.  Sometimes you take off your tired hat, and you have on your superstar hat.  Sometimes you remember.  Somehow, eventually, you remember more times than you forget.  You retrain those parenting muscles.  You change your reflexes.

And most importantly, you begin to accept that ‘different’ can be more than just what someone is wearing or how someone talks.  ‘Different’ can also be the way someone thinks, the way someone experiences the world.  If it’s “OK to be different” then it really is okay if he or she can hear you say “we’re going in 5 minutes” and not understand what that implies for what they have to do in those five minutes.  If it’s “OK to be different,” it really is okay if they simply don’t have an internal timer to tell them the difference between five minutes or five hours.  If “it’s OK to be different” and we really mean it, then we will change our expectations of that person and accommodate them with clear signals, maybe visuals, about what we are doing, when we are doing it, maybe why we are doing it.  Every. Single. Time.  We will make that all explicit rather than assume they ‘get it’.  We will adjust our actions, rather than take shortcuts and get ticked off when they don’t respond as we assume they should.  Each. And. Every. Time.  Until it is our new norm.

If it’s really “OK to be different” then we will lose that resentment, that frustration we feel when confronted with those differences.  This is key.  This is the unspoken challenge, so very hard to achieve.

My husband and I figured out at one point that we were signaling to our son at least a hundred different ways in a day that his instincts were wrong, that his thoughts were not right.  Our language was full of “no-s” and “don’ts” and “stops”.  We were telling him in ways big and small that he wasn’t conforming, that he wasn’t ‘right’.  Nothing he tried to do, thought about doing, wanted to do – nothing was ‘right’.

It was a sobering day for me as a parent.  Heartbreaking.  We backed off.  We started to give him space to work through things in his way, a different way.  We started to listen more closely, to understand his way of thinking – rather than always expecting him to understand our way of thinking.

We began to trust that in his different way, he has wisdom that we can all benefit from.  We began to accept.

Yes, it also helped when he recently moved to a special needs school and the pressure to conform was lifted.  But it’s so much more than what school he goes to and whether or not he must wear a tie every day that he feels strangles him.

It’s about respect.  It’s about remembering everybody’s brain IS different.  And it’s about honouring that difference – not repeating phrases that we become numb to hearing.  If it IS okay to be different, that must mean we are equal even as we are different.  It doesn’t mean “my way is the right way, but I will tolerate his differences.”  It means “his way is just as valid as my way.”

I don’t pretend we are anywhere near perfect on this.  We slip into old habits and old patterns all the time.  We still want to shield our son’s differences from people we assume might be hostile.  We get frustrated way too quickly, even if he is trying to explain what he is doing, why he is doing it, or simply just enjoying his moment.  We don’t wait, give space to his version of things.  We don’t always accommodate his uniqueness.

And yet – somehow over time, it really is okay to eat in the bathtub, says the more relaxed mum, the weathered mum who just spoon-fed her 12-year old youngest son raspberry swirl ice cream in a shocking blue bath while he played messy play with foaming soap. The mum who owes the author, Todd Parr, both an apology for having sworn at him so often and a sincere thanks for the way he forced me to challenge my assumptions.

There is no longer any doubt in our house – mum will indeed feed you in the bath (or shower too) if you request it.

Different?  For sure.  And it’s okay.

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.

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.

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

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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.

 

 

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.

———
More from The Auntie is available here.

Anxiety & FASD

we-love-a-child-with-fasd-2

By @FASD_Dad

Anxiety. We all get anxious about things. We’re late for an appointment. Can we afford to get a repair on the car done?  Does that girl I like like me too?  (Turns out she does and in a long and roundabout way that led to this blog.)

That anxiety is real, but compared to the anxiety our son feels, every day, all the time, about everything, our anxiety is trivial.

Our son is a boiling kettle of anxiety, says the counsellor who is helping us learn how to better care for him. That’s his normal state. That’s why, when something goes wrong or doesn’t go as he expects, he blows into a full scale meltdown almost immediately. A meltdown where things get thrown. Where kicks and punches are thrown. Where his little frame is rigid with tension because he simply cannot bear the pressure in his brain. Where his senses no longer work to help him interpret the world around him, but are screaming at him to fight! Fight! FIGHT!

So what causes this terrible anxiety? Well, in common with many kids with Fetal Alcohol Syndrome, pretty much anything. Our son has such a hard time understanding the world around him, his social relationships, the tasks he has to manage at school, that everything causes him to worry.

In the last few days it has manifested itself in different ways.

Does the dinner he loved yesterday taste very slightly different today? Or is it a little too hot? Or a little too cold? That’s a massive sensory problem which can mean dinner is thrown across the room. Or it could just mean a refusal to eat a meal and a retreat into his safe space to watch videos.

Are we going to a new gymnastics club? Somewhere unknown? That’s a huge source of anxiety which means it is really, really hard to get out of the door. We have to find exactly the right bandana to make it ok. Is the new gymnastics club different? Do they do the exercises slightly differently to the previous club? That means they’re doing it wrong, so he can’t join in, he has to sit and watch. And, because the hall is smaller and the noise too intense, the sensory input becomes too much and his anxiety levels start to go through the roof. So we have to leave. And now we need to find another gymnastics club because his original one was all girls and him, and that’s worked for several years but now he wants to be with boys, doing boys gymnastics.

Are we off for a walk with the dog? Well, the dog mustn’t be let off the lead because if he’s off the lead he might run away.  If he is out of sight for a second he might have run away, and the panic in our son’s voice is palpable. The dog, you see, ran away once. He got far enough away that he was taken to the pound, and we didn’t get him back for 24 hours. And so, for our son, the anxiety of losing his beloved pet is ever present. Something else to add to the list of things that add to his anxiety.

There’s swimming at school. But the message didn’t get to us, so he has to do hockey instead of swimming. That’s not right because the timetable says swimming.  Right there, that’s enough to spin him out of control and into meltdown. But at school, barely, he holds himself together, and then at home as he lets the pressure valve go.  With us he knows it is safe to let go, the meltdown starts and goes on and on. And a week later, the worry about whether we know it’s swimming and does he have his swimming kit in the bag comes bursting out as we try to get him out the door to school. Yes, we know, it’s here. Is it here? Yes, the kit is here. I have swimming today, do I have swimming?

The pressure his anxiety puts on him is horrible.

So what’s the effect of this? Of living on the edge all day every day? Of worrying about everything around you in such an intense way.

We’re constantly worried about him and his mental health. We are constantly concerned that our son will crack under this pressure, lose what ability he has to cope with life.

What is the long term effect of living with this level of anxiety on the rest of the family? For our family it puts us all on edge. Our elder non-FASD son is a calm boy, but when his mum and I argue, as we sometimes do under the pressure of dealing with yet another meltdown, he cracks and shouts at us to be calm. His worries are just below the surface too.

For us, it means living with uncertainty all the time. Wondering when the happy, smiling little boy in front of us will suddenly flip into a raging little bundle of doubts and fears, unable to process his anxieties and lashing out at those around him.

So we’re trying to give him tools to regulate himself. A mood chart, from a calm, blue sea to a raging storm so he can learn to express how he feels, something he really cannot do very well at the moment. We try to use it with him when he’s happy as well as when his mood is deteriorating, helping him to learn a vocabulary to tell us about himself.

We’re trying to be better about regulating the environment around him. Making sure each day that he knows what will be happening, what we’re doing, what he will do. No surprises is the rule. Over the summer we had stopped using the family white board to write was coming up – and he just asked us to start that again. A small sign of growing self-awareness – he needs to know the routine of the day.

When his mood cracks and the signs of meltdown are obvious we’re improvising on tools the therapists gave us. We use sensory stimulus to distract him from meltdown. Pretending with a variety of pressures that he is in a sandwich, he is cheese that melts; or a piece of hard pasta that gets wiggly when it’s cooked; an ice cube that melts, or an egg that cracks. At the moment this technique has a sometimes remarkable effect. Twice in one day it altered a mood that was darkening, and forestalled the descent into full sensory dysregulation.  We have learned some tips to try to head off the meltdowns.

We have to help stop the kettle boiling over, and find a way to take the pressure off so it isn’t ready to blow at any second. It’s tough. But for his sake, we need to find a way.