Extended Family, FASD, & Halloween Happiness

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

By The Auntie

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

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

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

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

So here’s the recipe …….

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

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

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

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

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

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

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

Happy Halloween!


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

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

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

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

Further reading:

Halloween Ideas for Kids with FASD

Acceptance for this All Hallow’s Eve

 

The Coming Summer Holidays Cause Anxiety For Our Son With FASD

We love a child with #FASD-7By @FASD_Mum

“Mummy, I can’t stop my body.”

In that gutted pause that comes after a loss of control, our 11-year old son found the words to tell me his truth.

“It doesn’t work right.  I want a potion to give me superpowers.”

This was after I prised from him the tablet clutched to his chest and saw that the screen was shattered.  He had pounded it in frustration because he could not make the volume go loud enough.  Instantly remorseful, he had been sitting there in dread, trying to problem-solve.  “There’s a place on the High Street with a sign that says ‘tablet repairs’ Mummy. They can fix it.”

We have educated ourselves enough about FASD to know yelling and punishment are the last things that would help him in this moment to learn the lessons he still needs to learn.  I was tired, defeated, but my child needed the best of me.  “I know it’s hard for you when you are frustrated.  It won’t always be like this.  When you get a bit older you will be better at controlling your frustration. I love you.”

Trying to think of ways to get to ‘yes’ before this spiraled into a full meltdown:  “You are frustrated aren’t you?”  Nods.  I moved the tablet out of arms reach, lest it become a projectile.  “It’s been hard lately, hasn’t it?”  More nods.  We moved to the couch.  He was curled up into himself, while wanting me to scratch his legs, rub his feet.

“You’ve been sad lately, haven’t you?”  That’s when the tear appeared in the corner of his eye.  The tear that made me choke back my own sadness. These silent tears are rare and heart-wrenching.  They speak volumes more than the more common full-on screaming tirades.  This poor child is trying so hard.  The end of the school year is too much for our son.  July has never been a good time in our house.

Every bake sale, non-uniform day, sponsored walk, community outreach activity…every special assembly, film day, school fete, disco and concert triggers anxiety over the uncertainty of expectations and timing.  For our son, it leads to strings of negative or oppositional instincts that can leave us all bewildered, shell-shocked, and trying to figure out how to reapply doors to hinges, literally.

For all the positive “you’ve tried hards” there is no sugar-coating the reality that end-of-year reports lead to disappointment and confusion.  A little more air escapes from his balloon just as he is trying to wrap his head around the fact that he will have new teachers and new subjects in the autumn.

In every conceivable way that he can, he has told us over and over again in recent weeks that he is on overload.  He has refused to go to school, to beloved extra-curricular events.  He tells us he is tired, his tummy hurts.  He is having digestive problems.  He tells us again and again he just wants to stay home.  He regresses.   He gets caught in the loop of perseverative behaviours – playing for hours with water in our garden, sneaking all the baking soda and baking powder and whisks to make potions – until something throws him over the edge into a meltdown.  If we try to redirect, he melts down sooner.  He wants to have independence, to determine what he does.  But it almost always ends with something that didn’t go just as he wanted it to.  And then we have blast off.

So we chat with the doctor.  We discuss re-jigging medicines again.  Brainstorm about possible other referrals.  The team around this child are growing concerned.  We can see it in their eyes.  We know they are looking at us with deepening worry.  Our veneer is scratched and frayed.  We can’t even pretend any longer.  We all know puberty is crashing down our our not-so-little guy.  We need to deal with his anxieties, give him the skills to be able to withstand these many pressures he feels.  We need to find ways to buoy him up when he feels like he is getting smashed by wave after wave of intimidating situations.

A psychiatric referral.  Tests to see if he has some sort of infection, to see if he needs growth hormone since he has gained no weight in more than six months while finally growing a bit taller.  X-rays scheduled to see if there is anything we can do to make the thumb on his right hand work (FASD affects more than the brain, he also has some fused vertebrae).

Each new step forward requires even more logistical juggling.  It’s welcome, but it’s more, always more, pressing down on us all.  I vented to my husband, maybe cruelly in the middle of a moment, “Prepare yourself.  It’s going to get worse, a hundred times worse before this gets better.”  The look in his eyes made me think I had slapped him.  But the reality is, I don’t think that’s an exaggeration.  We somehow have got to get through these teenage years with our son’s self-esteem intact.  And it is going to be hard.  Hard for him.  Hard for us.  Hard for his brother.  Hard for those around us, watching, wanting to help but not knowing how.

Our son most certainly does not have a carefree childhood, if that even exists anymore.  For him, this summer will not be the end-of-year locker-slamming, running-toward-the-freedom release I once knew.  For him it is a time of anxiety and uncertainty: unstructured time is no gift to our youngest.

And of course, in our recent daily survival mode, we haven’t fully sorted the coming holiday.  So we add another thing to list that we beat ourselves up about.  Deer in headlights, we see the summer holiday bearing down on us and make frantic calls for summer camps, urgently fill out forms to register him with various special needs databases and not unsurprisingly find out way too late about deadlines missed.  More emails.  More calls.  Clutching at straws.  We find one day-camp that looks great, they even have a Special Needs Coordinator.  We gently raise the idea with him.  He didn’t say no.  We wonder if we are going to lose a lot of money if we sign him up and he then refuses to go.

And the cherry on the top?  The last day of school coincides with his birthday, which is an event to him on par with or exceeding Christmas. The disappointment will come when he does not get everything he has requested for months on end. (The list would bankrupt Richard Branson). This year we are going to use the day to satisfy his sensory curiosity.  We are going to have a ‘no-manners dinner’ – an idea stolen from my niece.  We are going to have an “eat it or wear it” challenge per his instructions.  We are going to try to make it messy and memorable and pray it is as fun as he thinks it will be – but we dread it, are prepared for it to all crash down.  We have learned with this son that we cannot be rainmakers.  No matter how delicious the food I cook, and how many times he has liked it before, I am always ready for the instantaneous rejection that I try ever so hard to not take personally.  Birthdays, holidays, we are always on-guard.  We know for him the mundane is the true gift.  Which doesn’t mean he doesn’t want more.  Much, much more.

“Mummy, I don’t want to be 12.  I want to be 10.”

This is a child who sees things changing, who feels the differences more the older he becomes.  We can’t change what will be.  All we can do is shower him with our love – unconditional even-when-you-break-electronics love.

So here we go, the last week of school before the break.  Of course England has decided to hit the upper 30s (90s in Fahrenheit) this week, making the school an oven and adding yet more sensory challenges.  After we spent 30+ minutes coaxing him and gently trying to ease him out the door despite his refusal, and successfully avoid a meltdown, we work out a deal where his TA will help him plan the shopping list for the no-manners dinner.  We gird ourselves for the ups and downs of this week, the week we know we will look back on with envy once we get into the heart of this coming summer madness.

Even if it is not the best-timed birthday, he does after all need a new tablet.  The new one will have a rugged cover and a free replacement warranty.  We do learn.  Slowly.  By the time he is grown up, we may just have figured things out.

 

Playing with Fire

Lighter

By @FASD_Mum

Highs and lows. Hope and fear. Cuddles and rage. Adrenaline and lethargy. Togetherness and loneliness.  Our last couple of weeks have had so many ups and downs it’s hard to know how to disentangle it all, how to amplify the positives and how to minimize the negatives.

I have started at least three different blog posts over the past two weeks, each time feeling like I was not true to the experiences we have been having, each time feeling like I was only telling a part of the story.  Each time feeling like I was being misleading if I mentioned one thing and not another.

Sitting here now that the house is quiet, thinking about this over coffee that is growing cold, I realize that inability to figure things out is actually the point.  With FASD there is no even keel, or at least we have yet to find it if it does exist.  Life is constantly changing.  One minute is triumphant, the next is soul-destroying.  It’s hard for those outside our home to see this.  Our son manages fairly well in public and at school.  The real ups and downs come out at home, his safe place, the place where the full impact of trying so hard throughout his day means he releases it all here.  When he simply cannot hold it in one more minute, he knows – and I hope he always remembers this – that if he stumbles here, if his internal disequilibrium overflows or bursts out, here we will always help him up after that moment passes.  As it always does.

Triumphs – we have had some in the past two weeks.  It seems the new medication our son is taking has had profoundly positive effects on his ability to focus in school.  We are being told that it is transformative in his ability to not only work until the end of the day but also to do more of his work independently.  The Special Needs team wants to reevaluate him after the break, as they think with this new medication they may be able to revise some of what they thought they knew about his abilities.  This medication is providing a clearer window now into the mind of the child we always knew had the potential to do more than they thought he could.  He is bringing home awards for sustained effort and good work.  We couldn’t be more proud, more deeply and seriously pleased.

And yet we live with the recent memory of what it was like for him during those few weeks we had him off all of the medication.  Those days when he couldn’t sit still, his internal engine revving so hard he was literally upside down and in constant motion, unable to stop the jittering, unable to be still.  We remember the days when the last medication had side effects that crept up on us, turning our sweet young son into a sailor-mouthed, aggressive handful in the mornings and evenings.  We walk with trepidation as we know this drug too may develop side effects.  We walk with uneasiness, the warning echoing in our heads from one adult with FASD who said his parents set him up for addiction by putting him on these drugs at an early age.  So we try to hold onto the encouraging messages from the school.  We remind ourselves these medications can give him time, space to learn more, absorb more, to develop coping mechanisms while he is young, before he hits those teenage storms we know are coming.  We still have one last hurdle over this holiday, as we move him to a long-lasting version of the medication, to make his days less of a chemical rollercoaster.  We are tentatively hopeful but prepared in case these next weeks become another minefield.

Scares – we have had those as well, especially during this last week.  For four days in a row he had taken possession of either a lighter or matches.  The first we knew about it was when the school notified us that he was warned/reprimanded because he had a rusty lighter in his pocket that he said came from our garden.  I never believed that.  We do not smoke and have not had lighters here, though it’s not impossible a guest may have left one out there.  Then over the next two days, he had (despite our searching him and the school searching him) two more lighters at home, new ones this time, one of which my husband found him playing with at 10.00 at night when I thought he was asleep.  Flicking the lighter unsuccessfully in his bottom bunk that is surrounded by oh-so flammable curtains.

My house burned down in the middle of the night when I was a kid, about his age.  This scenario leaves me cold, immovable.  Scared.  He also had some matches at school that he somehow got from the chemistry room.  We learned that when he was with his auntie at the allotment last Sunday he also had found a lighter and was playing with it.  I noticed he was watching a video on YouTube on how to light matches.  Our son, during the same week as we were getting such good news at school, seemed to be turning into a junior pyromaniac.

Heart-stopping, stomach-thudding stuff.  The kind of news that pounds its way into your head, and refuses to let you sleep at 2:00 am or 4:00am.  The kind of stuff that makes you sniff for the smell of burning bedclothes even when you know there are no more lighters.  That makes you hope desperately there are no more lighters.  That makes you realize you will never be able to control all the variables, to guard against every danger.  The kind of stuff that leaves you unable to think or move or process information, probably in much the same way your child’s brain freezes many times, every day.

Sure, we have had the talks.  Repeatedly.  I have used every maternal trick possible to wheedle out of him where these things are coming from.  My gut instinct is this is some kind of bullying.  His FASD means he cannot tell me fully what has been happening since he cannot remember the timelines.  His brain confabulates – it fills in the details he can’t quite remember or can’t face with other versions of plausible stories.  We latch onto a few recurring themes having to do with unnamed Year 10 kids who smoke and something about a back field at the school.  We discuss this daily with the Special Needs team at the school.  Everyone is perplexed as he has not been alone long enough to go wandering afar.

We will probably never know where these things have been coming from.  The committed and thoughtful SENCO stayed up late making a social story about true ‘friends’ for him.  We discuss with him the dangers of fire, and why this is much more serious than bringing home forbidden candy his friends give to him.  We give him phrases and words to use. We practice saying “no thank you” if someone offers him a cigarette or a lighter.  We remind him to go straight to a teacher.  We come at this from every direction we know how.  And then I find a huge plastic container of toffees under his bed that he somehow absconded from his auntie’s car, and I feel deflated – if he can smuggle something like that past us all, how can we possibly be on guard for all of the small but potentially deadly dangers.  I ask my husband to buy more fire extinguishers, but he doesn’t understand my underlying urgencies.  It’s a jumble – teetering on the edge of that place I dare not go.  I described it recently, that knowledge I have that if I start crying I will not stop.  The overwhelming sadness I have for the realities and dangers my son will face again and again and again, those things beyond his control and beyond his comprehension, at least for now.

There is no malice in our son.  Just like when he practiced breaking eggs over his head in the bathtub, he is exploring, feeding his underdeveloped senses, being scientific in his way.  His brain cannot link cause and effect so he doesn’t really get it that some things are more dangerous than others – certainly not in the moment of intense interest and discovery.  He is genuinely dismayed when he feels we are overreacting to some thing or another.

Above all we must be sure he feels safe in coming to us with any problem.  We must not let him feel ‘naughty’.  For his safety and ours, he must know he can reach out to us on those times when he gets himself out on a limb and doesn’t know how to climb back without help.  We must be his safe place.  We cannot make him retreat into himself and hide those things that happen because of his brain mechanics.  We must always show him our love and understanding.  Even as he plays with fire.

His self-confidence and self-image will be the key to how he is able to cope over the coming years.  We know this.  If he is to avoid the statistics, and they are grim, we must give him every possible chance to understand that his differences do not define him.  We must celebrate those triumphs and minimize the pitfalls.  And so, despite having spent every night this week alert for flames that I know can burn down a houseful of dreams, I smile and hug him every morning.  I scratch his back, a bit sad that now that he has grown up a bit he is able to direct me more – “To the left, up a bit, there, to the right” rather than the previously adorable “No Mummy, not there! Scratch where it’s itchy!”

I am in pain, physical pain from an injury and due to nerve damage in my spine. I have an intense job, and it is extremely difficult to juggle that and my physical issues and the increasing demands of this new phase of parenting.  Everything jumbles together and amplifies the stresses of the days.

I also know that we are not alone, and we are by far not facing the worst challenges that FASD can throw at a family.  Last weekend we organized another FASD support group meeting.  I tried to write about that too, but was unable to explain the seesaw effect of hearing more about the struggles and successes other families face. The heartbreaks and smiles.  The hopes and fears.  Ups and downs. Triumphs and pitfalls.  There is nothing particularly special about anything I have just written about.  It is happening in houses all across the country, all around the world.

FASD is so little understood in our society.  The stigma suffocates any real discussion about how to help the 2% of our society that struggles with the range of conditions associated with this physical disability.  It is mind-numbingly wearying as a parent to know that our son carries not only the weight of living every moment of every day with this condition, but that we have to prepare him for a life of explaining himself to others who refuse to look at him as a whole person and to understand his disability.  People refuse to face FASD because if they do they may have to re-evaluate what assumptions they reconcile within themselves about drinking and pregnancy. It’s backward, archaic, and short-sighted of our policy makers to allow this silence to continue.

 

 

 

 

 

 

 

FASD, ADHD & meds – what’s a parent to do?

We love a child with #FASD-3

By @FASD_Mum

As a parent of a child with Fetal Alcohol Syndrome and ADHD, you spend a lot more time than you ever imagined possible thinking about how to help your child to focus.  It’s something most of us take for granted, but it is pivotal for a child’s prospects for learning.  And kids with FASDs can’t always focus due to the injury done to their brains.

In fact, you spend so much time thinking about it, that your own life can become blurry around the edges.  You find buried under a stack the addresses for those letters you meant to write two Christmases ago.  You see the corners of the rooms that have not been de-cobwebbed in way too long (Charlotte, are you there?).  You look across the room at your tired spouse, and wonder where the jukebox feeding, sometimes dancing days went.  The months fade into new months and you feel like time is seeping away from you without progress.  And that realizations scares the hell out of you.  Because while the edges of life are blurred, somehow the most important things come into sharp contrast.  Without a doubt, you become consumed with the critical importance of steering your kids through the pre-teen and teenage years.

Of course, I would say that now.  When they were toddlers, I said that was the most critical time.  And it was.  And when they were in primary school, that was most important.  And it was. But I am reminded of a good friend who has been a lifelong educator.  He once told me, after a difficult stint as an intercity middle school teacher, that people don’t spend enough time worrying about their kids during the teenage years.  He felt that was the most important time to be there for the kids.  And it is.  As a person who has always worked best toward deadlines, this phase, this seems All Important for both of our sons.  I am sure that is a natural feeling.  And it must be said I really enjoy this phase of parenting, it’s more interesting in many ways than the cuddle-feed-clean-sleep phase.  It’s more creative in some ways for a parent, and it is great fun to watch your children reinterpreting the world for themselves, on their terms.  You see seeds you planted years ago start to yield some fresh new perspectives.  But you also fear the gaps that you may have left – why didn’t you insist on piano lessons, or Japanese, or Taekwondo?

For our son with FAS, it feels like what we can accomplish in these coming years will either set him on solid ground or leave him mired in quicksand.  We will either give him tools and vocabulary to better understand how to help and explain himself and his needs, or we will not.  We will either give him the self-confidence and self-awareness he needs to learn the techniques and strategies to help him manage his condition, or we will not.  If he is going to beat the statistics, as I firmly believe he can, we need to focus.  He needs to focus.

And so lines I once held dear are blurred.  I swore I would never medicate my kids.  I had more than my fair share to say about the Ritalin Revolution.  I believed parents needed to buckle up and get on with parenting these kids better.  I believed it was unfair to the kids to mess with their brain chemistry.

And yet, here we are.

Our son needs to be able to focus.  If he can focus, he can fly.  Literally.  Today, we saw him in his first secondary school sports competition. This little four-foot-nothing kid who could barely see over the the top of the trampoline was soaring high, competing as well as any other kid.  It was 5 pm.  A child who normally loses focus by about 1.30 pm on a school day stood around for hours after school in a gym he’d never seen before, in a format he had never experienced before, and he competed as an equal.  Confident and accepted.  The coach had a buddy system in place for him. I watched with great appreciation as one of the older girls calmly and sweetly kept him by her side, redirecting him when he started to fiddle with something or another.

We sat by parents who were in different ways gently exploring our son’s differences.  I found myself telling one set of parents we have known throughout primary school that our son has been preparing for this moment ever since he was a toddler, practically bungee jumping off our bookshelves and throwing himself onto the couch.  Light-hearted, a bit of a joke.  Less light, I told them about his sensory need for proprioceptive input, and the “happy dances” he did as a toddler, holding our fingers and jumping up and down.  (Yes, I actually dropped the word ‘proprioceptive’ into casual conversation.)  I stopped myself from discussing his full diagnosis with them, wondering if I have missed a moment.  But the wider group of our son’s classmates don’t yet know the diagnosis, or maybe they do and I don’t know it.  But that gym wasn’t the place for that full conversation.

But on the other side of me was a parent from a different school, who recognized our son from a gymnastics club.  She surprised me.  It was the first time I had someone directly say to me, a stranger, that her daughter has special needs.  That opened up for me the next sentence I said, surprising myself, “Our son also has special needs too.”  She then said, “What is his diagnosis?”  Just like that, directly.  I found myself really appreciating the ability to just say it, thinking that maybe it helps people when you are more open about these things.  (Though I then became concerned that she had never heard of FAS, and she said she works with special needs kids.  Realizing yet again that there is a big gaping hole in the education people receive about this condition.)

On one of the FASD Facebook forums, I have recently been in touch with adults with FASD who believe their parents set them up for later addiction by putting them on stimulant medications.  Their stories chill my heart and fuel my concerns.  We have asked experts about this repeatedly.  The doctors insist the levels of drugs are too low to cause addiction and point out that there are many factors involved with addictions, many of which leave this population of kids particularly vulnerable.

We know these drugs aren’t great.  We have watched carefully and with concern what impact they have.  We have been alarmed by previous drugs and their side effects, so much so that we have asked for the drugs to be switched.  We believe some of his more aggressive and distressing behaviors have been because he was strung out from the old meds.  Recently, for he first time in years, we tried two weeks where he was off them altogether.  He was “more crazy, less angry” as our elder son described it. It was lovely to see our sweet son again, we knew he was in there.  It was great to see him eating with gusto again.  But it was heartbreaking to see him literally unable to sit still.  I described it as an engine running too fast (and only yesterday learned this is a term some experts are using in an innovative program for helping kids with FASD regulate, and a study shows it is even having a physical effect of creating more grey matter inside key parts of their brain. We know it’s important to get the line right between FASD and ADHD and if using medications to have the right ones.

This week we upped the new medication to two doses per day.  Our son’s school reported his best level of attention ever.  (The Special Educational Needs Coordinator didn’t realize he had the double dose one day, and told us he was like a different child.) They said it is the first time all year he has focused through to the end of the day.  The positive impact extends into the early evening, as we have seen today at the tournament and as we have seen in a more peaceful home since he started the two doses a day regime.

An adult with ADHD once said to me, “if you would not hesitate to get your son eye glasses to help his eyes focus, why would you not get him what he needs to help his brain focus?”

All I can say, is it is very obvious when the drugs work and when they don’t.  If they were not working, we would not dream of giving them to our son.  Our hope is that we can use the more clarified mental space they provide to give him tools to learn how to better manage his condition, in hopes that maybe someday he won’t need these medications.  But as a kid who is capable of soaring, it seems almost cruel to deny him that chance because we don’t fully understand the medications.  We have to trust somehow that these medical experts do know what they are talking about.

We have to focus too.  We have to focus on the best use of these increasingly limited pre-teen and teen days.  We know the hormonal storms are coming soon enough.  We know big challenges lie ahead.  We want our son to have all the tools he can to face that onslaught.  To do that we need him to be able to focus on his learning now.  We need to bend and stretch every neural connection we can.  We need him to be able to absorb what he can, when he can, while he can.

And we need to celebrate the days when he can literally fly. Days like today when he handed over to me the silver medal his team won, with a smile of pure pride, eyes sparkling.  Or like yesterday (another double dose day), when he came home glowing because he led (yes, led) a team of kids he doesn’t normally work with for an engineering/marble run project that won some award or other.  I cannot tell you how inherently satisfying and rewarding it felt to see him celebrated for these more grown up incarnations of his little kid obsessions.  As with jumping and bouncing, our son has spent years playing with various marble runs, bordering on an obsession.

I cannot tell you how unnerving it is, in its own weird way, to feel that little flicker of hope inside my chest (we don’t after all want to get ahead of ourselves).  But maybe, just maybe, all those hours sitting on the floor chasing marbles – and maybe, just maybe all those hours at the playground and holding hands of a bouncing toddler on a trampoline – were indeed setting the groundwork for tomorrows rather than just filling the time.  And maybe, just maybe, if these pills enable him to focus enough to reach inside himself for the answers and to phrase his need for support in a way others understand, then maybe just maybe the pills too are one of those tools we seek so hard to find.  At least for now, at least during these pre-teen and teenage years.

And maybe, just maybe, at least for now, we need to focus on the outcomes, not on the fears.

Homework is evil

We love a child with #FASD-2

By @FASD_Mum

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

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

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

Or so we thought.

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

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

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

Not. A. Chance.

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

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

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

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

Not. A. Chance.

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

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

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

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

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

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

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

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

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

 

 

It’s Always Better Outside – Even on the Hardest of Days

It's 6.30, you just want to sleep, instead you are faced with a brewing #FASD meltdown.-3

 

By @FASD_Mum (with a postscript by The Auntie)

It must be morning even though it’s dark as night. I sense motion.  My brain says it’s time to be alert.  My body wants to burrow deeper into the blankets. I try to ignore what I know I must do, my mind scanning hard to piece together that dream, to slip back into sleep.

I know I will soon pay dearly for every moment I steal for myself now.  Our son has Fetal Alcohol Syndrome and leaving him to his own devices is usually not a great way to start the day.  My mind is already calculating tradeoffs, desperate for just a few more moments of comfort.  Are there any sweets accessible in the kitchen? Does he have his phone?  Does it sound like he’s listening to music or is it a silly YouTube video that will wind him up?  Is he teasing the dog?  Is he being quiet or will he wake up the others?  It’s almost too tempting.

But, I decide it’s time to face this day.  Head pounding already, the moment my feet hit the floor I have a premonition that things will not go well this morning.  Maybe because I know myself well enough to know I am not on my game.  Maybe it’s because last night’s meltdown still stifles my mood.  Maybe its because I hear that silly laughter-beyond-joy that usually signals our son is already sliding into a place ridden with booby traps for a tired parent.  It’s only 6.30 am.

I mentally calculate the lay of the land.  He is in the dark, in the hallway, on the floor.  This is his way of being considerate.  He has been awake for a while and did not want to wake me up.  I remind myself this is kind of him and vow to say that directly.  I forget to do that.  He heads into the living room while I go into the kitchen to turn on the kettle.  I am in need of caffeine.  I gamble that I have a few minutes before he will start to mess with the dog.  I missed the fact that he had a Penguin bar in his hand as he passed me in the hallway.  I was soon to learn this was not his first sweet thing for the morning, there was a cache of candy hidden in his room, provided by a school friend.  Sugar on an empty stomach, mainlining into his bloodstream…of course in retrospect it’s easy to see where this would end up.

I give him his little blue pill, wondering for the thousandth time if this is part of our problem these days.  His aggression has increased dramatically since he switched medications (a move we ironically initiated because he was growing impatient on his last meds).  The new medication also coincides with the start of mainstream secondary school, so it’s a toss up as to what is the cause of this changed landscape.  We have mixed feelings about seeking medical advice.  There is tension between my husband and I as to the best way forward with regard to the medications.  Truth is, neither of us knows what is right.  Do we take him off all of it and go from there? Do we try to up this medication to a higher dose?  We don’t have any experience to draw upon.  Of course, the option we don’t often discuss is that our son may simply be moving into a new phase of his condition, and as he ages this aggression may be part of our emerging teen’s hormonal experience.

Our son says he’s still hungry.  I know he excitedly ate some chicken deli meat last night, so I make another trade-off in my head and ask if he would like some for breakfast.  Processed meat might not be the breakfast of champions, but it has to be better than the sugary things he wants.  He eats five pieces, laden with who knows what chemicals that will do who knows what to his already deepening systemic disequilibrium.  But I feel a sense of relief.  At least now I know he has had something with some semblance of protein in it.  But then he moves on to the sugar donuts.  He is back in 30 seconds having thrown out the donut, distressed his hands are sticky.  What was supposed to be a reward leaves him ramped up several notches on the this-morning-is-going-to-suck scale.

I still haven’t made my tea, my head is still pounding, and I am starting to feel sorry for myself.  This is a fatal mistake.  I say something in a curt tone that puts him on the defensive, and there we go.  Now I am no longer his lovely “Mummy” but now a “bitch” (I will spare us the related adjectives).  I feel the weight of the morning dragging me down when I should be buoying myself up for what I know is coming.  I lose patience, partly because I am focusing on keeping the dog safe.

I mentally calculate the trade offs between dragging my husband out of bed sooner rather than later, knowing he needs the sleep and knowing it may take him too long to come up to speed.  We are, after all, already in the fast lane.

Something snaps somewhere.  Whatever fragile line my son was walking has split and we are now deeply in it.  I am being called every name in the book.  The dog has been kicked and hit.  My husband is up, trying but bleary eyed, and I feel bad yet again that he has had less time than I did to gear up.  We know we need to get our son to a quiet place.  But that comes out as punishment rather than incentive and there is a royal battle unfolding.

Our son is now in his room, in full meltdown.  I mentally calculate how loud it must get before it wakens our teenage son whose Chronic Fatigue Syndrome means it would probably have to be somewhere much higher on the Richter scale.  For that, at least, I am thankful.

By the time I get up there, it’s too late.  Our son comes out of his room, not looking at me.  He’s halfway past me when I hear him say, “I peed in my room.” I freeze.  Scared.  My reaction was fear.  This is now the second time in recent weeks he has done something like this.  It’s new behavior and it feels huge. No parenting book I have ever read has told me me what I should do now.

I say what I shouldn’t say, “Why did you do that?”  And I say what might not be so bad, “Will you help me clean it up?” But husband is here now, freaked more than me, visibly shaken, and this is in danger of further spiraling if that is possible.  I send my husband off to find carpet cleaner to give him time to gather himself while I blurt out the only thing that comes to mind.  I ask my son, “Would you like to go for a scooter ride?”

He freezes, mid-swear, upside down on his bed.  “What?”

“Would you like to go for a scooter ride?”

Disbelief and then a glimmer of hope hits his eyes.  Pause, while he assesses my meaning.  “Yes!”

“Can you get dressed while I clean this up?”

“What?”

“Here, put on these clothes.”  When he continues messing around, I ask,  “Do you want to go on the scooter?”

Pause.  “Yes.”

“Then you have to get dressed.”  Expletive.

I don’t get sidetracked.  I don’t let it go.  “Do you want to go on the scooter?”

“Yes.”

“Then you have to get dressed, and I have to clean this up first.”

“I peed in my room.”

“I know.  We have to clean it up before you can go on the scooter.  Can you sit quietly for a moment?”

“OK.”

And he did.  I did.  And out we went.

He has a new Christmas scooter.  It sparks.  He was wearing his Egyptian Pharaoh headdress and he was free for some time just to “be.”  Just to be the free-flying, made-for-speed kid who loves the feeling of things moving around his face and ears.  I sometimes still see in his eyes the toddler who was never outside for the first 16 months of his life.  I will never forget how laughed with glee when he first felt the breeze kiss his face.  In a way, he hasn’t stopped reaching for it since.  I doubt he ever will.

So there we were, outside, early on a Sunday morning.  The dog got much needed exercise.  My husband usually does these weekend walks as I have some medical issues.  But getting out helped me forget my own aches and pains this morning.  I had time to begin to clear my head.  We chatted a bit about what had happened, but it was clear to me he wasn’t ready yet.  I just ensured he saw me smiling at him. Laughing as he splashed through puddles.  Congratulating him on the way he made the scooter jump over the curbs and speed bumps.  I wanted him to see my love.

I made some resolutions.  I remembered when I was single I used to wake up early and go for long walks.  I have decided it might be worth trying to do this with him, maybe even without the dog.  Just head outside for a quick walk as soon as we wake up.  Before the walls start closing in on us.  I will talk with the doc tomorrow to at least let her know our concerns about the medications.  I will try to wake up faster tomorrow.  I will do a more thorough sugar sweep and talk to the school to see if they can keep an eye out for illicit candy deals.  I will check our son’s pockets to make sure he is not taking spare change to swap for candy.  I will be more conscious of the link between various foods and these incidents.  I also resolved I would write about this morning honestly.  It’s hard to speak about mornings such as these.  Some things come too close to the comfort zone for even closest family and friends.  But we decided to be more open about our family’s struggles in hopes that it can help others understand our son and this disability. And this post, this morning is a part of our reality. I know our son feels it deeply though he cannot make sense of it.  Someday he may read this.  I hope when and if he does he understands we have shared this story with compassion.  We know this morning disturbed him greatly too.  I cannot wait until he can us how things feel from his perspective.  In the meantime, we reach out to adults with FASD to learn from them as much as we can.

Returning home, I knew it we needed to break the dynamic.  Though the house was a mess and we were unshowered and far from our finest, I swallowed my pride and invited a friend and her younger daughter over for pancakes.  It helps our son immensely to play with kids closer to his own emotional age.  Then our son had gymnastics.  After gymnastics we dropped him at his auntie’s allotment, where we left him digging and looking for worms among people who knew what kind of a day it had been and who would feed his proprioceptive senses with things to push, pull and dump.

My husband and I are tiptoeing around the house, fearful we are facing a repeat of this morning.  We know there is a fine balance between keeping him physically engaged and overdoing it.  We will soon find out which of those options we will be dealing with for the late afternoon and into the evening.

So what’s the moral of this story?  It’s always better outside.  I was intrigued when a South African physiologist, upon learning of our son’s Fetal Alcohol Syndrome, said without skipping a beat, “Oxygen.”  She maintained that the most important thing to help his brain is oxygen and the only way to get it to the brain is through exercise.  It’s interesting and humbling to think one of the easiest things we can possibly do for him is right there, everywhere, free and available if only we get outside and remember to breathe.

——

Allotment Auntie Replies:

We provide the oxygen.

Having (finally) taken on board that FASD Mum and FASD Dad need regular respite, last week-end was bread and butter pudding making time and, knowing that I was going to spend a bit of time on my allotment while the sun was out, I asked if SuperT wanted to come for an hour or two today.

I’ve got lots of oxygen on the allotment plot.

There were also piles of compost to be moved. Worms to be found. Holes to be dug. Garlic to be planted. And a brushing dance song to be invented.

I was there with a friend, helping her on her plot. SuperT followed instructions. Was polite. Said thank-you for his hot chocolate (made with water). Was patient while we chatted at length with another allotmenteer.

Whatever his behaviour at home, when he is with other people his behaviour is great. If I had a pound for the number of times that I have heard in my professional work parents exclaim, when hearing that their child was perfectly behaved at school/club/extra-curricular activity, “Really??? REALLY??? Coz she’s a little stinker at home”, then I would have a nice little nest egg!

I know that those two hours today may well be a tiny oasis in the middle of a desert storm, but I wanted to reassure Mum and Dad that they are raising a little lad I am happy to spend time with. You must be getting something right.

And guess what? It’s not just SuperT that needs the oxygen. Mum, Dad and Big Brov do too. Even if it’s just for two hours. And remember, they won’t always ask to be given breathing space.

We can provide the oxygen. Pick up the phone.

—–

For more information, here is an interesting related article that was passed on to us by @FASDNETUK:
The Most Natural Treatment of All: Green Spaces and ADHD, (November 2012).  The article focuses on ADHD, but it seems like similar studies could be done about FASD (plus many kids have overlapping conditions – our son also has an ADHD diagnosis)