Yes! Follow THEIR Dreams, Not Yours

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By SB

Children with disabilities too often hear ‘no’.  This was true for our little one who has a neurodisability as the result of prenatal exposure to alcohol – a Foetal Alcohol Spectrum Disorder (FASD).  Before we understood that his brain was simply not wired to respond quickly or intuitively to a world he found deeply overwhelming, we kept ‘correcting’ him.  Every day he heard in a thousand different ways that his instincts and his responses were somehow wrong. That was our fault, not his.  We moved too fast for his brain to process it all.  Unknowingly, we threw him in over his head time and time and time again. We were too slow to hear what he was telling us, too slow to react to his needs.  His behaviour may have been the focus, but we were the ones who needed to change. He was finally diagnosed with FASD at the age of 10, but even after the diagnosis it took time for us to adapt to the implications of his brain damage.

Things started to improve when we started to listen to him, really listen.  We realized that while he cannot always phrase it well, he has insights into his condition that can help us to help him.  It became a positive loop – the more we listened, the more we understood.  It took some detective work and some professional input, but the more insight we had, the more his anxiety decreased.  The more relaxed he was, the better he could express himself.  Being more able to understand his perspectives allowed us to agree or at least discuss strategies.  Slowly, with this new shared understanding, we all started to come up for air.

One key element was seeing the world from his perspective – understanding the impact of the negatives we were showering over him with our (we thought) gentle ‘helpful’ reminders.  We dropped the ‘no-s’ and ‘don’ts’, and we started to say yes more often.

Accepting he would always need support, we set out quite deliberately to build a network around him, and began to prioritise settings where he was better understood (including moving to a specialist school).  We also came to appreciate that as hard as it was for us to wrap our heads around the diagnosis, it was harder for extended family, friends, teachers, and people in the wider community.  So, we opened up about our lives, his struggles.  We very carefully and consciously helped educate those around him about FASD.  We tried to face it all with positivity.

Life-changing stuff, that turned out to be in ways big and small (even if it is still a work in progress, as readers of this blog will know).  It included me giving up a career of nearly 30-years to work on raising FASD awareness full-time.

But this wasn’t one-directional.  Our son also has stepped up and has led us to a whole new understanding of what he can do with the right kind of support.

I’ll give you a rather extreme example.

Our son doesn’t see or experience the world the same way we do.  But that doesn’t mean he doesn’t have his own dreams.  All kids do.  Our guy has in his head a definite picture of where he wants to go, what he wants to accomplish.  Specifically, our son wants to play Wembley.  Or the O2.  Preferably with Little Mix.  You probably just smiled.  But please know, he is dead serious about this.

All those years he spent watching Hannah Montana, perfecting the songs and dances.  The hundred times he watched the DVD about how Justin Bieber became a star.  The disappointment when his YouTube channel didn’t get a million views once we set it up, and the belief it still will someday.  Each and every night spent in his room blasting Little Mix, rocking and memorizing and absorbing the music into his very soul.  Engaging his muscle memory, using music to perseverate on something, to focus his mind, to help him relax, to help his body know when and how to keep it all together.  Countless ‘concerts’ in his room with stuffed toy ‘fans’ and toy stage lights aimed just so.  The years of shopping in charity shops for costumes.  Researching stage lights.  Contemplating how curtains rise and fall.  The years of music and singing lessons.  Ongoing involvement in local supportive theatre groups.

Our guy has been preparing mentally for his Tour for a long, long time.  And in his mind, this was and is very, very real.  A dream this big could be heartbreaking. Some might say we should ‘nip it in the bud’ to avoid profound disappointment.  And yet…

There was and is no way on this earth that I am going to tell this child that he will not make it to Wembley.  Because, really, I don’t know that.  He just might.  And he sure isn’t likely to get there if we don’t believe he can.

Over the past several months his conversations about his Tour became increasingly insistent.  He wanted so desperately to perform, but couldn’t quite figure out how to make it happen.  He was becoming frustrated.

So, we thought outside of every box, and decided to give muscle to his dream.  We rallied all those people around him who could help and we simply said yes.

Yes.  We will help you bring your rainbow-coloured Flashing Lights Tour to life.  Yes, people will come to see just you perform.  Yes, seriously!  You can do it.  We told him his grandmother rented a school theatre.  Oh, if you could have seen the light that sparked in his eyes.  He went to work.  He orchestrated it all.  He designed the stage.  He planned, practiced and rehearsed his ten-song set list at school and with his voice teacher.  We designed posters and Tour merchandise.  Thanks to his auntie, he had five costume changes all lined up.  Another auntie agreed to be MC, fully prepared to support him in whatever way he needed that night.  A teacher arranged things in the sound and light booth – not blinking when he said he wanted it to look like the Ariana Grande stage, showing how we could improvise.  About 50 people agreed to attend.

When the night finally arrived, we weren’t sure how things would go.  During the sound check he closed into himself.  He looked frighteningly small and alone on the big stage.  With a thud in my stomach, I started questioning this whole idea.  But in one of the most eye-opening moments of the whole experience, we literally saw him stand taller, more confidently when two of his young friends arrived early and started to cheer him on in practice.  Singing for them, he expanded again.  I knew then that the night would be golden.

It started with the ‘Meet and Greet’ – adoring fans clamouring outside his ‘Tour Bus’ (a superb addition provided by a friend).  His ‘security guard’ then hustled him into the theatre.  Curtains opened and for about 45 minutes our little one filled not just the stage but the whole theatre with his presence.  The audience were armed with tour tags on lanyards, LED lights, glow-sticks, colourful scarves to wave.  Song by song he grew stronger, more confident until the almost impossibly perfect moment during the encore when he became complete amid confetti canons and massive balloons bouncing across the stage and around the adoring and cheering audience.  This was the grand finale he has so often dreamed about!  He floated through the After Show party and during his ride home on the Tour Bus.

For this one night we removed all the roadblocks, and we said one big, huge, concerted “Yes!”  We stepped so far out of the mold it was a bit scary for us all.  It was a risk he was willing to take, so we took it.  We showed him that his dreams can come true, that we hear him, that we will cheer for him in the way he choses to present himself to the world.  Rather than encourage him to fit in to a model that was never created for him, rather than encouraging him to keep his head down so as not to attract attention due to his vulnerability, we said yes.  Maybe it was counter-intuitive … but we did exactly the opposite of what would be ‘safe’ for him as a child with a disability.  We followed his lead and put him up front, under the spotlights, right there on centre stage, precisely where he wanted to be.  Where he deserved to be.

And the unexpected happened.  All the glitz and attention calmed him.  A family member summed it up, “He was totally fulfilled, therefore he was totally at peace with himself. He would have done that performance to ten or 10,000. It was his place, his dream and his achievement.”  (He later said to me, “Mummy, I wouldn’t be nervous, I could sing to 30,000 people.”)  A friend observed, “The people, the songs, the atmosphere – he breathed in (his form of yoga) and found himself calm and in control after the performance.”  It never dawned on me that this was a type of self-regulation.

In creating space for him to give of himself so fully, we all became that much more complete ourselves.  “His zest for life is infectious!” one friend said. “Who else can get a room of adults and awkward teenagers dancing and waving scarves?! We all left with aching mouths from smiling and feeling very proud.”

Another friend quoted Audrey Lourde, “It’s not our differences that divide us, it is our inability to recognise, accept and celebrate those differences.”  For that night, we were united in our son’s world, and boy did we celebrate those differences.  And it was a blast.

The whole evening was full of sparkle and colour.  His effervescent spirit held us all up just that much higher.  We were all there with him, for him, because of him.  This was his 13th birthday celebration – his chosen way to joyfully enter teendom.

I know not every child can get on stage and belt out ten songs in front of a crowd while dancing in glittery costumes.  But every child has some one thing.  Whatever that one thing may be deserves oxygen and sunlight so it can grow.  If we listen closely enough, and help our kids follow their dreams (not ours), we are planting the surety in their souls that they are heard, they do matter, and this world sparkles and shines more brightly because they are here.  Maybe to you my family sounds bonkers.  Yes, we did this Big.  Large.  It was most certainly over the top.  That was a conscious choice.  We chose this, rather than a holiday.  It may be unusual to spend an evening simulating a pop concert instead of going away – but this was oh so much better than scurrying off in a car where he’d meltdown to some place where he would be overwhelmed and lost just because that is what people do for holidays.

The memory of this night will last forever.  Hopefully it will always be with him, deep inside, on those dark nights when self-doubt starts to gnaw away.  Hopefully this experience will serve as some kind of insulation against the relentless onslaught on his self-esteem that we fear the teenage and young adult years will involve.

Come what may, for this one glorious night our little one was up there, giving his all to a room full of people who were quite happy to hear HIS voice.  We weren’t telling him what to do, he was showing us what he can do.  For this night, he was surrounded by the thunderous applause of one huge and resounding “Yes!”  For this night, he shone forth in all his magnificence.  We could see – literally see – the network we created cheering him on.  The thought of that still brings me to tears, even if I was too busy at the time jumping and dancing in the front row to understand then the full impact of the Flashing Lights Tour.

We must have done something right.  The first words out of his mouth the next morning were “Mummy!  I had a dream about going on tour again!”

 

 

 

 

 

 

 

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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.

 

 

Extended Family, FASD, & Halloween Happiness

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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

 

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.  

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.

Extended Family Can Do Tiny Things To Help FASD Families Struggling This Holiday

AuntieTinyThingsBy The Auntie

I’m learning (slowly).

You may have noticed a recent increase in tension and a feeling of impending doom in your FASD mums and dads. If you haven’t, then they are hiding it very well and not letting on (they do that!) If they tell you that everything is absolutely fine and they are looking forward to the near future, they are lying.

Why? What’s the matter?

One word.

Holidays.

They’ve arrived and mums and dads have six long weeks stretched out in front of them with nothing to occupy the little ones and still having to hold down jobs. These kids manage (or not) to hold themselves together whilst at school, but when the holidays descend there is an additional 7 hrs each day that already frazzled parents have to get through.

I have said before that just popping in for coffee can change the atmosphere in a house and can head off an impending meltdown. I’m here to remind you today that you can very much support your FASD family by doing a tiny thing.

Today I took advantage of free child labour and took SuperT to my allotment where he helped me dig potatoes, harvest radishes and beetroot and pick runner beans.

And I’m learning.

I know now that before he can dig potatoes, he has to tie today’s hairpiece just so, or it will get into his eyes.

I know that he is really, really trying to dig the potatoes properly and is not deliberately chopping bits off with the trowel.

I know that the big fork is too big for him to use properly, but using it to check that patch of ground for any potatoes that I missed (without doing any damage) makes him feel like a grown-up, big boy.

I know that I have told him a million times that those particular blackberries belong to someone else, but they are too delicious to resist, so I take him to my friend’s allotment who has a blackberry that I know she won’t mind me raiding, just once.

I know that the watering can is filled so that I can water the lettuce and radish, but actually it’s more fun to water SuperT’s hands.

* * * * *

I love the way that he shouts “POTATO” every time I uncover one, collects it from the ground and (after I told him that throwing them might bruise them) places them very carefully in the bag.

I love the grin on his face when he sees I’ve written “SuperT’s Potato” on a label for the little potato plant he’s put in the ground (I’ve no idea whether it will grow or not, but that’s not the point)

I love the way that he measured the runner beans I have picked against the ones still on the plant to see if it is long enough to pick.

I love the joy in his eyes when he realized that, as we were leaving, I had stopped the car in the track outside the allotments to let him jump out and pick wild blackberries (well they probably belong to someone inside, but outside, I think they are fair game).

I love the fact that I “have the best allotment ever!” And he was, literally, full of beans!

And when I delivered him home, dad was having a much needed doze, mum had been able to get some work done and he was in a much better mood – possibly even avoided a meltdown.

None of which I knew when I collected him. I had just listened when mum and dad had made impending doom noises about the holidays and knew that something little from time to time can make a difference. I was just after some free child labour, but what might have happened is that a possibly dreadful day melted away, rather than melted down.

You CAN do it.

__________________

A comment from @FASD_MUM:  This post really makes us smile. The day was going nowhere good, fast. The knock on the door was so welcome, and our son so excited to have his time with his auntie. He came home relaxed and proud to show us the runner beans, beetroot and potatoes. It was like night and day, the 90 minutes reprieve helped relax the whole house. The Auntie’s example is a quick trip to her allotment, but it could just as easily have been a walk in the woods, a romp at the playground, tossing a ball back and forth, splashing in puddles, a hot chocolate in a coffee shop. It doesn’t really matter whatever ‘it’ is. Our guy still craves one-on-one attention. And it is lovely to watch their relationship grow a little deeper every time they have these adventures. On behalf of FASD parents everywhere, I urge you to pick up the phone and ask if that little one might like to go for a ______. (You can fill in the blank.)

Company’s Coming

You are entering a home where a child with #FASD is deeply loved.Hang your disbelief at the door, and join us. We need you.By @FASD_Mum

We have a family member from across the ocean flying in for a visit.  Like a deer in headlights, I look around our house, survey our lives, and decide there is no way to sweep all this under the carpet.  There is nothing I can do to ‘fix’ this.  The life I once knew, the life I grew to expect – that is not the life I lead.  We are not only 3,000 miles away from the world this family member knows.  We might as well be a million miles away.  A different galaxy.  His wife, whom I love dearly, recently was recognized as a ‘Mother of the Year.’  So well-deserved was that award that I feel ridiculous even feeling self-conscious – I would never claim to be in that league.  I am pretty sure there is not an FASD parent or carer out there who feels qualified for such a distinction because our lives are so thoroughly discombobulated, so completely up-ended, all the time.  Maybe, once in a blue moon, I might be in the running for Mother of the Nano Second.  That’s how we rock and roll around here.  Moment by moment.

So, giving myself a break (and acknowledging reality), I decided yesterday that rather than feel a sense of shame about inviting someone from a land far away into this chaos, I would look at it instead as a gift we are extending to him – a sign that we trust him enough with our family’s most difficult truths to allow him in.

That said, I would like to prepare a survival guide for him, with some tips to inoculate him before he crosses into the Twilight Zone.

  1. Don’t look down. My mom used to pride herself on the fact that you could eat off her kitchen floor.  This is also true here – on any one of our floors you could probably find enough dropped grapes, cheerios and chips to have a full feast, but I am not sure that is what my mother meant.  Of course, the dust bunnies might get to the food before you do.  Actually, forget dust bunnies.  Think tumbleweed from the Wild West. These new forms of flora and fauna are in part gestating because our youngest sneaks food, rarely sits at the table, and sometimes (OK, often) spits out what he doesn’t like.  He doesn’t always remember to tidy up. There are Pepperami wrappers squirrelled away in the most remarkable places.  It is also because actual cleaning has been relegated to a luxury activity in our home.  Never fear, I do know what a clean home looks like, and in fact I know how to clean one.  I grew up with order.    It was not unknown for my mother to enter my room at 7 am with a vacuum and for me to jump out of bed and take it from her so I could finish for her.  In contrast, when I vacuum, our kids ask who is coming over, since that is the only association they have with that item.  It is not due to laziness.  In part it’s because our youngest gets completely unsettled by the noise, he retreats, he covers his ears.  He hates it.  It’s also because we can rarely lose focus on our youngest long enough to vacuum the full house.  Sure, we could do it when he is at school or out of the house.  But honestly, when he is not here, we often take a rest.  And after all, if you stop looking down, you stop worrying so much about it.
  1. Don’t look laterally. Our family’s chaos is visible the moment you walk through our door. Papers and books and bills and mail are everywhere.  My mom had eagle-eyed control over what came in and out of our house, her little multi-pocket file system was a wonder, and it perfectly matched the calendar on her wall.  She.  Was. Organized.  Here we have varying stacks, piles, and other piles – recognizable by height.  Like strata in the rock face, we estimate how old one stack is by various markers – like, ‘that homework was from last term.’  We can barely keep track of all the various medical and school appointments and assessments – the only sure way is to stick them on the refrigerator where we KNOW we will see them, and hope we have entered them properly into our phone calendars that don’t talk to each other across the Mac/PC divide.  Toys are everywhere they shouldn’t be with uncanny accuracy.  Our son fixates on certain things at certain times.  This requires that they are visible, if we put them away, he is restless until he has them out again.  He occasionally goes on walkabouts around the edges of the room, fixates on the Need To Know what is under which bookcase.  Those moments (which teeter on the edge of a meltdown) are the other time (in addition to visitors) that we dare a deep clean. Our son has a love/hate relationship with his favorite toys.  I apologize in advance if you step on marbles.  They do get thrown with frequency around here when he loses control of his impulses.  So, it is best to ignore your peripheral vision when visiting our house.  And to wear thick socks or hard soles.  And to ignore our son when he might be looking under the couches or refrigerator with a torch.
  1. Don’t look behind closed doors. This is for your own well-being. The laundry piles rule our house. They are tall, intimidating, and haunting.  Our youngest is tough on clothes.  There is no double-dipping into previously worn clothes here with all his splashing in puddles, experimenting with TipEx, forgetting to use tissues, or having minor accidents when totally focused on some activity.  This requires triage on the laundry piles – the Most Essential gets washed first.  It is quite possible that the items at the very bottom might have been there for months, fancier clothes worn on a special work trip or for a special occasion.    Don’t tell anyone. But never fear, our sweatpants and t-shirts are frequently used and washed. True, our beds are rarely made (which is quite remarkable given how easy it is to make a bed with a duvet).  But honestly, we are usually happy enough if the floors are relatively clear from stumbling hazards.  It’s a low bar, and we often don’t meet it.  There are no shining furniture surfaces, in part because once laundry is done it rarely makes it into the drawers, and also because dust will have settled on any other rare free space.  The kids also know that the smell of furniture polish means someone is coming over.  But please don’t feel insulted if we have not broken out the Pledge for your visit.  It only means a) we trust you, and b) we are really, really tired right now.  And yes, we know our house should be ordered and neat for our son with FASD.  We know.  We have read the advice a million times.  Kids with FASD need less input, neat rooms, a controlled environment with visual cues and a predictable schedule.  We know.  We know. We know.  But we are not yet at a place where we can do that.  We are human.  Our lives are busy.  We work from home, and that helps us have the flexibility we need.  But somehow we do still work even if the home office has been termed the ‘cargo bay’ by our eldest.  And yet, our family functions despite the chaos.  Just.  This is an area where I am most unforgiving of myself.  But if it wasn’t this, it would be something else.  Raising a child with special needs opens the door to a massive amount of self-doubt. I have always said there are infinite numbers of ways to screw up your kids.  When you think you have it handled on one front, some other part of things falls apart.  We can’t do everything.  So please, just ignore what is past those doors, even if our son drags you up there to find the dress up clothes.  And humor me and pretend you did not see the Laundry Saschwatch hovering in the corner.
  1. Don’t be insulted if I have ordered pizza and, seriously, don’t expect us all to sit around a table for more than the first 15 minutes.  Don’t get me wrong.  I love food.  I love to cook.  I love gathering people around a table to enjoy the food I have creatively agonized over for several hours.  I like candlelight and cloth napkins and funky serving plates.  Love it.    But don’t get your hopes up.  We don’t do that here.  Our youngest has difficulty sitting still and being alone.  I cannot take my focus off of him long enough to properly cook.  Dinnertime is the ‘witching hour’ in our house, the hardest part of the day for a kid who finds it so hard to keep himself together ‘out there’ in the world.  We have learned the hard way that it is best not to ignite battles at that time of day, when his medication is leaving his system, and when his is like a powder keg waiting for a spark.  So whatever I serve you, please know it’s not what I want to be serving you.  And don’t worry, I really don’t expect it will be eaten and enjoyed by all: a) because I am constantly in a Cold War with English tastebuds and b) because half the time something might get rejected just because someone ‘breathed’ on it.  Seriously.  Please don’t tut-tut if I don’t make our son eat, don’t ask him to finish what’s on his plate, let him leave the table, and ignore it when I hear him ‘sneak’ some crisps from the cupboard.  Yes, I will have heard him opening that drawer.  He doesn’t know I know and doesn’t realize sometimes I decide quantities of calories are more important than protein.  Forcing him to eat a food he finds offensive due to some transient or incomprehensible sensory problem is a recipe for a meltdown that could take us into orbit.  Strategic timing is key – so don’t be surprised when we give him a burger for breakfast.  Yes, we know he has dark allergic circles under his eyes – probably from sneaking prohibited milk protein products at school.  Or from that spaghetti carbonara we let him have because he was craving it, and it has calories.  The experts tell us he is not starving.  Never fear, we did check.  He is at least not starving.
  1. Don’t be shocked at our family’s reliance on screens. We know, believe me, we know there are downsides to kids using screens.  We had every intention of having kids who were artistic, well-adjusted, and who only used screens sparingly. But music with or without headphones helps our youngest relax and most of that is digital these days (if you see his scattered CD collection, you will understand why).  Headphones and computer games (no first-person shooting) help our oldest sail through the chaos with a remarkably laid-back attitude.  We do pay attention, we do channel them toward productive sites.  We have three rules that have served us well: not too much skin, no violence, and no bad words.  In fact, the youngest has recently been teaching himself Mandarin Chinese, Russian, French and Arabic on Little Pim videos.  What parent wouldn’t be proud of that?  (For the moment, we will ignore the fact he also searched for ‘how to light a lighter with a match’ recently. But that does remind me, please do let us know if you see him with matches or a lighter – this is another recent fixation.)  And, just for the record, we do have ‘no screens’ mornings on the weekend.  We must get points for that at least.  Even when we pretend we don’t know why our eldest suddenly is ‘sleeping late’ or our youngest just wants to be alone in his room. Our parenting style is a never-ending series of trade-offs in support of the larger good.  Sometimes that larger good is literally the chance to finish a cup of coffee in peace.
  1. Don’t think we are ‘soft’ or unaware that our child has just been rude beyond words. We hear it.  We see it.  We know how horrible and unacceptable this all seems to you.  We are not tired to the point of not caring about this.  We know we should not be learning crude vocabulary from an 11-year old.  Please, when you feel appalled, please remember, we are parenting a child with brain damage – it’s a hidden disability.  If he were blind or deaf you would not think twice if we made certain accommodations.  We are accommodating our son’s needs, upon expert advice.  In those moments, he is becoming dysregulated.  Yes, when we were young, we would have been sent to bed without food for a week as a result of those words.  (It doesn’t matter that our son regularly goes to bed without eating, that’s not the point.)  Those behaviors you are witnessing are signs that his brain is becoming overstimulated, overwhelmed.  Despite every macho-parent instinct we might have to tell him off (and even when we forget ourselves and give into that instinct), the reality is we need most of all to slow things down, get him to calm down, give the ‘thinking’ part of his brain a chance to get back in control of the ‘fight and flight’ part of his brain.  Obviously we know throwing, kicking, spitting, biting, and foul language is not okay.  But in that moment, that is not our primary focus.  We will talk with him about it later, and no, there will be no ‘consequences’ for this behavior.  Not as you would recognize them.  Our primary job will be to reassure him, to help him understand we know he can’t always control himself, to help him learn how to recognize and someday control the triggers, and to tell him we love him unconditionally.  Kids with FASD too often end up with addictions or in jail.  Our job is keeping his self-confidence up so he doesn’t end up becoming a statistic.  We are in this for the long-game.  So we overlook a few fouls and keep our eyes on the goal post.  But probably you won’t see any of this behavior anyway because he will be trying to keep it together for you.  But we will be tiptoeing in ways you may not notice, because we know it is lurking just there, around the corner.  If you are here late for the witching hour or early in the morning you are more likely to see it.  But it is always lurking in the shadows.
  1. Don’t be surprised when our child acts much younger than his age. Yes, we indulge his silliness and his childish behavior.  This is also on medical advice.  The emotional age of kids with FASD is generally half their chronological age.  When stressed, that can be even lower.  So if you hear him pretend to be a baby, see him wearing outlandish dress up clothes, or see him playing with a simple toy one minute while another minute he is putting together electric circuits, please understand this is who he is.  There is no point to trying for force him to act his age.  He is.
  1. Please, don’t judge. It’s an FASD parent’s fear, that others are judging.  We know you are.  That’s ok.  You really don’t need to.  We kick ourselves enough anyway.  We do what we need to do.  We are in survival mode.  Also, please don’t be shocked when you see my husband and I taking horrible shortcuts with each other.  Our love is strong.  We are doing what many couples can’t – we are managing to get through this together.  It’s not pretty, but our relationship is deep enough to hold tight through the storms and we still picture that day when our rocking chairs will be side by side and we will still spout our unsolicited advice to world leaders while watching the evening news.  Yes, we know we should be more gentle.  Yes, we know we should do ‘date nights’.  Yes we know romance is important.  But knowing that is different that managing it.  We are trying.  That’s the thing, we are trying.  And sometimes a well-timed and understanding shrug of the shoulders can be as romantic as a candlelit meal.  That shout aimed at each other rather than at a storming child, can be the biggest sign of unshakable love.  We know we can take it.
  1. Please, despite all of the above, please don’t underestimate our son. This is a child who once converted musical notes to a color coded system.  A child who can pull one of a hundred books off the shelf, open to a specific page, and show something to back up a point he is trying to make.  This is a child who see things we all miss – the minute deviances in designs of different marble run pieces, the way windshield wipers go on different cars.  He remembers the exact route to places he has visited only one or two times.  Who suddenly scores two levels higher than anticipated on a maths test. His brain is complex, complicated, the links and neural pathways are not the same as in yours or mine.  But it works.  It works remarkably well considering he is probably only able to process every third word he hears because people talk too fast.  Just because he cannot always control it, just because he cannot always access the information that is there, this does not mean his brain is not magnificent.  He is gifted in music and dancing – probably a positive result of the fact that half of his brain often works without input from the other half.  (And not just because he will leave one song on repeat for hours til he has every nuance locked into every fibre of his being.)  His body is a wonder – his strength and physical ability have always been precocious.  The flips he used to do off the bookshelves onto our couch have laid the groundwork for a fine young gymnast.  He might seem like he is not ‘getting it’ today but a month from now he will demonstrate he heard what you were saying.  Just because he can’t answer standard test questions in a busy, noisy school, does not mean he doesn’t know.  We know he will be an awesome adult.  We have had the privilege of getting to know adults with FASD via social media.  Their lives can be astounding and fulfilling and giving.  We love showing him the accomplishments of others like him.  We are building now the foundation for that future.  Even if we seem like we are babying, that doesn’t mean we are not preparing him for an amazingly meaningful adulthood.
  1. We are honoured to have you visit our house. You wouldn’t be here if we didn’t trust you.  We are so tired of pretending like everything is ‘normal’ in our house.  It is not.  We know you will see this.  We couldn’t hide it if we tried.  For too long we have been doing this alone.  It is only in the past year or so that we have opened up to the world about our family’s journey. We are still learning how to do this.  You should meet some of the awesome families we have had the chance to meet.  We are rookies.  We don’t really know what to say, how to act when we let others in.  But we cannot pretend anymore.  We want you to visit.  We want you to laugh and see the joy with us.  We sometimes want a shoulder to cry on, because this is all so challenging and sometimes scary.  We need people to help us get past this continuing sense of guilt that our world is not perfect.

OK, so now that you are armed and ready, welcome!  Welcome to our ‘Home, Chaotic, Home’.  Try not to trip. We hope you don’t have dust allergies.  Don’t look at anything.  Ignore most of what you hear, and welcome into our world and into our lives.  We wish this visit could be all about you as we are genuinely interested in your life and your world – in fact we are starved for news from The Outside.  But more than likely our son’s needs will limit what we can do, when we do it, where we do it.  You may find we are only listening with half an ear because we are assessing just how ominous that silence may be, or what exactly that door closing meant, what the crash might have been.

Nevertheless – despite the messy house, the lack of complete attention, the absence of table linen – we do want you here, more than you can know.  We want you to get to know our children.  The one thing we want you to see is how their eyes sparkle.   We hope you will take away from our home our deep sense of family that is at the core of all we do.  We hope you feel a little lighter having been touched in some way (hopefully that does not involve airborne food) the inherent optimism that underlies everything we do.  We believe in our children.  We believe with all of our souls in a bright future.  Our family may look different, but we are real.  And if we are honest we are even a little – a lot – lonely.

So yes, please know you are so very welcome to our pizza-eating, mess-ignoring, loudly chaotic, whirlwind of an inherently good if exhausting life.

Welcome.

——–

(Post script – I am primarily writing this for other families affected by FASD, who I know have similar hesitancies when opening their lives to an extended group of family and friends.  It is not because I have any particular worries about this week’s visitor.  I thank him in advance for helping me to frame this blog post.  And for the joy and goodwill I know he brings with him.)

Extended family members can support the support

FASD parents_carers can support each other, but you can support the support..jpg

Guest Blog by The Auntie

On Saturday morning I spent nearly three hours at an FASD support group with my brother, in the company of a couple of birth mothers, some adopters, some fosterers (sic?) and a partner, swapping stories, discussing Social Services options and the school system.

Having read a lot of the information that my sister-in-law has shared on various media platforms, I thought I was quite up to date with what information was out there. But whilst listening to these primaries carers, I began to realize that I know nothing!

Those parents/carers that are on the coal face know instinctively that there are no rules. Each of their children is different. And will behave differently on different days – what works one day, won’t work the next. One day they think they have spotted a trigger and then next day, it doesn’t trigger. Similar behaviours were discussed and random differences. There was empathy, sympathy and laughter.

I asked some questions and tried to wrap my head around the answers. Even more than conversations with my brother and sister-in-law, this group made me realize that there is no formula for success with FASD children, but each parent and carer muddles along as best they can.

One comment that nearly broke my heart was when a couple said that they had stopped asking close family and friends for help. Their family and friends just didn’t get it. This wasn’t said to gain sympathy. It was just said. These families spend all their time fighting the system, educating the system and trying to get the system to work for them. At this support group we were able to exchange ideas, good contacts and ways to access formal support.

But what I found most useful was that not one person there seemed to look at me and think “she’s not a parent, she’s not going to get it”. They were open and frank and willing to help me understand. I know I’ve said it before, but it’s a massive thing for FASD families to ask for help and if they’ve stopped asking, you are going to have to be the ones to open that dialogue.

If you have the opportunity to join your family at one of these support groups, I can promise it will go a long way to help you get it. Or even go looking for one for them to attend, if they don’t already.

FASD parents/carers can support each other, but you can support the support.

—-

See also:

INVOLVEMENT (An open letter to the extended families of a child with FASD), by The Auntie

Respite (verb) – to grant a temporary period of relief, by The Auntie