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.

Advertisements

Reaching Out After an FASD Diagnosis

We could no longer pretend everything was 'normal'We started to reach out about our son's FASD diagnosisAnd that changed everything.By FASD_Mum

We all want to be ‘normal’.  We want our kids to be loved.  When things go wrong, our instincts are to put on a smile, pretend ‘there’s nothing to see here,’ and to brush past staring strangers.  But sometimes that just doesn’t work anymore. This post is about our journey in reaching out to others about our son’s FASD diagnosis.

The issues that made that process of opening up so difficult began long before we had that acronym to hold onto.  We fought hard to adopt our son.  We had to wrestle with the complicated system.  We also had some of our closest family members and friends challenge us regarding the risks involved.  As older parents we were aware there were risks.  We had faced this head-on earlier.  Despite the odds, we did not do any of the advanced tests during my earlier successful pregnancy.  We were ready then to love any child who came our way.  We approached the adoption the same way.

And yet, I deleted some photos from my camera the very first day we met the friendly, determined and curious child who would complete our world.  We were entering the interim adoption period while we were waiting for things to be finalized and I simply could not handle re-opening those horrible discussions again about the risks and I knew those photos would raise eyebrows.  That night in the hotel we had one of the deepest conversations of our marriage.  I remember looking intently at those pictures, saying something is not right.  We had to face this, we didn’t turn away.  I remember a warmth in the room, a closeness.  The next day we asked some follow up questions in the baby home.  We were told, no, he doesn’t have Downs Syndrome.  We had wondered about this from the photos, although it wouldn’t have changed our decision.  (We now know we were looking at the full facial features of Fetal Alcohol Syndrome).  They asked if we wanted to see another baby.  We declined.  We both knew without a doubt we were not going to change this course.  This child who had so intently looked into our souls, he would walk his path with us.  We would hold his hands forever just as we once promised each other.  We would not be shopping for a baby.

The early post-adoption years were full of therapy after therapy after appointment after appointment.  We asked the hard questions, had rounds of genetic tests.  Nothing specific was pinpointed.  Not once did the possibility of Fetal Alcohol Syndrome pop up and we cannot understand why we ourselves didn’t think of it.  People understood he had sensory issues and various physical issues.  It all seemed natural for someone who had been in an institution for 16 months.

Life at home grew harder as our son began to grow.  We used to be very social.  We used to have lots of friends over for dinners.  We used to go out often with kids or without.  But as time went on, it became harder to think of a babysitter who ‘could handle’ looking after our youngest.  It became harder to think who wouldn’t mind it if something awkward happened while we were out somewhere.  It became harder to find energy to focus on ourselves as a couple.  It became harder even to talk about it with family.  Our parenting wasn’t working, something was wrong.  Bedtimes would go on for hours.  Time outs would become raging battles.  We were unable to get through even one store without some sort of holy hell breaking out.  But we couldn’t really talk about it, as we had assured everyone we understood the risks and we were prepared for whatever happened.  We would say we’d had a ‘hard day’ but somehow that was simply not translating into any kind of action from those around us.  Once when I complained someone said, “Well, why did you have kids then?” That one off-hand comment shut me up for another year or two.  Still our son was young enough that an hour at a playground screaming wildly around the walkways on his scooter at 100 miles an hour and some death-defying swinging was still a guaranteed release.

So then, The Diagnosis.  He was 10.  We had resisted the earlier autism diagnosis.  Autism had been discussed from those initial days, and he just didn’t quite fit the profile.  But this Fetal Alcohol Syndrome diagnosis was different somehow.

“Irreversible brain damage” is a phrase that can knock the air out of your body and make you wonder how you will find the strength to get the next breath. It can send all kinds of heavy doors slamming down on a future that you once dreamed for your child.  To know it could have been avoided can leave you gasping from the cruelty that exists in this universe.  At least, that is what it can feel like at first.  It is a hard, hard thing to hear.

All those test scores and numbers and percentiles pile up.  They seem so damning and so cold.  Even as they rattled them off after their imperfect testing sessions, even as we fought back knowing these figures did not capture our son’s abilities and strengths, even as we were being bombarded with some of the most horrible news we could have been given, we were already planning how to package this for the people in our world.  We wouldn’t tell them everything.  No need for them to know that part of it.  We would wait (a year, it turned out) for the full report, then maybe we could go into more details.  We did share some of it, carefully, with a very small circle (leaving out some key numbers, leaving out the worst of it).  Having a diagnosis did help especially with those family members who may have been thinking he would just ‘grow out of it’ or that he was just ‘being naughty.’  But none of us, not then, really understood yet what a diagnosis of FASD meant.

The process of beginning to understand how our son’s brain works took time.  Figuring out how to explain that to others around us was daunting.

We were stunned and we grieved. We swallowed the mind-boggling implication of the statement we were told as we received the diagnosis that in the UK, “There is no protocol for post-diagnostic support” for a person with FASD.  Having just been told our son had brain damage, we were simultaneously told there is nothing being offered to help us move forward with that news.  We stared at the reports and then put them away.  I think I slid into a mild depression, which isn’t an easy thing to do when there is a special needs child in our home needing constant attention.

Meanwhile, we took to the internet.  We googled. And googled.  We found some of the national groups via our google searches. (That too was confusing as there are several networks even in a place as small as the UK, all with similar names, similar purposes.)  Despite having been advised by UK professionals not to look at international information that might not apply here, we devoured it all.  Science crosses borders.  The information became overwhelming.  I started an online “Pocket” folder to keep track of the websites – with tags so I could search more easily for different information (FASD brain, FASD education, FASD prevention, etc).

We started with the school which had zero experience with a child with an FASD diagnosis. It became obvious we needed to get them information quickly. We prepared a whole binder full of some of the best practices.  (Some of the articles are here.)  While there is a balance in not overloading the very busy educators, no one in this school at least was going to have the excuse that they didn’t know where to find information.  We started to talk with the teachers about FASD nearly every day at drop-off and pick-up specifically about some of the tactics we were learning.  We worked cooperatively. We made some decisions when our son was in Year 6, facing national tests that the schools had been aiming toward since those students walked through the door.  He did not take the SATs.  We had a long relationship with the secondary school, since our kids both attended every holiday workshop they offered. We met early on in the spring with the SENCO at the secondary school he would be attending the following fall, again, armed with a fully loaded binder of information.  We planned his transition carefully.

But even still, we were floundering at home.  Everything was hard.  Our days were chaos.  We were concerned about the impact of this atmosphere on us all, including especially how it might be impacting our older son.

My husband and I had a serious talk about how we could no longer pretend everything was ‘normal.’

This was a key moment. I am sure I was pushing him a bit out of his comfort zone, but we agreed to widen the number of people who knew about our son’s diagnosis.  I needed this.  I was becoming too overwhelmed.  We were overwhelmed.

We started a secret Facebook Group.  People have a lot of negative to say about social media, but it’s a tool that can be useful.  For us, this was a key turning point.  This was the moment our lives began to feel a bit less lonely and really, it’s a simple thing to do for anyone who is on Facebook already.  Facebook has a feature that lets you add selected people to a ‘secret’ group – this is different than the closed groups of the various FASD networks.  For our secret group we chose who we wanted to start sharing information with.  We chose a mix of family, friends, a few colleagues, people we know who have children with special needs, and others.  This was our first message to the group. We had an overwhelmingly positive response.

“Dear friends: They say ‘it takes a village’ and this is our virtual village. We are inviting you to join this closed ‘secret’ group because you have shown over the years your love for our son and our our family. We have recently learned from the UK’s leading expert, that he has fetal alcohol syndrome, the effects of which have been compounded by early neglect… He has neurological damage that has resulted in difficulties in his ability to perform executive functions (i.e. – more abstract thinking). This condition, they say, is severe and lifelong. He functions very well with support. He is mainstreamed in public school and is performing well, though at a lower level than his age group…He has amazing strengths – he is an exceptional gymnast, he is great at music/dancing/singing (we have been told he may have perfect pitch), and he excels at other individual sports, esp. swimming. He is a generally positive and loving child. He has ADHD, without the inattentive side of it. He does not have autism due to his social reciprocity abilities, but he does have some restrictive repetitive behaviors. Our purpose in setting up this group is to allow us to discuss things a little more freely, using FB to our benefit, without having the full group of FB friends and colleagues see this discussion, as we want also to respect his privacy and dignity. (As a ‘secret’ group, only members can see the group, its members or its postings.) We have been struggling as a family for a long time now. We know we need help. Part of that is widening the number of people we share this journey with. We are not trying to exclude anyone from this discussion, but we don’t want the numbers to get too big, or we will be replicating FB itself… So we welcome your thoughts, insights and fellowship along this path.”

We also started to squeeze in one small social activity.  We started to attend coffee mornings on Friday mornings with a group of parents from the school. We began to help initiate these as well.  The purpose is not solely about FASD, but it allows us time to chat informally.  Some family members began to come.  Our network grew a little stronger.  This group includes the men who came to school with red-painted nails when they heard our son was being teased for having red nails on a school dress-up day.  Heroes, one and all.

We started to blog. We decided we had been having so much trouble finding all the resources that we might as well make that research available to others.  We also decided we needed a way as a family to further develop our own thoughts and to process the experiences.  The very first entry, “Meltdowns,” was explaining how we finally understood our son’s brain works differently:

“Spectacular meltdowns occur almost daily – things sailing across the room, accompanied by increasingly spicy vocabulary, gestures, and appalling rudeness. Deep distress and frustration boils out and over us all. But now we know none of this is heartfelt or intentional on his part. His brain just can’t stop it at this moment. The important thing is not to hold a grudge, because our child has a remarkable and admirable capacity to move on from such moments, to spring back with a great big hug and an ‘I’m sorry.’”

We started to attend support groups. This was another pivotal moment which we wrote about in a post about “Support and Resilience”.  Suddenly, even our worst case scenarios were not so scary.  We met people who have been through those worst cases and told us there is always hope.

We continued to arm both of our children and our family with information about FASD. We have gently been giving our younger son more words to understand himself.  We have given his older brother more detailed information.  We don’t belabor any of this, but we are educating our family unit with the information we all need.  Our older son has a space on the blog where he can write when he wants to.  An auntie has joined as a guest blogger as well, addressing issues of how to engage extended family in these discussions.  Some of her posts have become the most widely shared, proving so many of us need help in engaging extended family.

We started a local support group. We talked openly with the pediatrician, and viewed her as an ally. She too felt the need for much greater education and resources in our area. She encouraged us to start a local support group.  She attended our first meeting and shares our information with relevant families.  The group started small, with only three people.  A few months later we now have approximately 20 people and we are all learning from each other.  The network is growing as more people are aware we are here.  We are becoming tied in with regional services for potential adopters, other groups with special needs kids.  Our posters are now hanging in local hospitals and doctors’ offices.  We are working collaboratively where possible.

We have become tied into national and international networks, including adults with FASD. This is the most significant change for us.  To have access to adult role models with FASD, people who have been there and who can tell us what our child is not yet able to explain….wow.  That’s mind-altering, horizon expanding power  and insight for we parents of younger kids.

This weekend we ran an educational table about FASD at a school fete at our sons’ old primary school, along with a game to get kids to come over.  We made a simple display focused on the theme that different brains work different ways, and it’s okay to be different.  We handed out flyers, announced our next support group date.

People tiptoed around it all a bit. It’s a heavy topic for a festive environment.  But we know it’s important to start slowly and build step by step.  It felt good to have our little one there, proudly helping.  It was wonderful when both our sons were helping the little kids with the games.  It felt a little bit like we’d come full circle as a family.  We entered that school so many years ago, with one child that none of us really understood.  And here we were, strong.  Confident.  Committed.  If even one person filed away the messages, and if someone one day reaches out for help or avoids a drink while pregnant, then it will have been well worth a hectic day in the damp and cool British summer.

Our family is still on a journey.  There are others who are so far ahead of where we are in our understanding, others so much better able to help or give advice.  We don’t claim to have the answers.  We are barely able to handle the still increasing challenges in our own home.

I am not trying to imply this path is easy.  In fact, it has been unbelievably hard lately.

But, even then, even when it feels like the weight of the world has landed just right smack on top of your weary and battered shoulders, even then it’s possible to look outward a little.

Finding the courage to open up to ourselves, our family, friends, colleagues and community about these struggles has in fact helped us immensely.

We are getting back more from this process than we give.  We can see past the walls we felt slamming down during those early post-diagnosis days.

There is Norwegian saying, “the path is made by walking it.”  We don’t know exactly where this all is heading, but one thing is certain.  Moving forward is so much better than standing still.

With a little one who is constantly changing, who flies and flips with great zeal into every day, whose life is a rollercoaster of emotion and impulse and love, we simply can’t be static.  For him, we have to be brave enough to tell the world who he is, where we are at, and what we need to make it through the moments, through the days, through the stages.  And to reach out to others to find out what we don’t know.

If it ‘takes a village’ to raise one kid, then it is also our job to contribute to the community.  In the process it’s the basis of a good life, the kind of life our parents taught us to live.   The kind of life we are teaching our sons to live.  Beyond the fear.

If you haven’t done so yet, go on.  Take just one step.  It feels good.

———————–

Just read this also related piece about the added challenges of reaching out from the perspective of a birth mum – The Look of Horror When I Tell You My Child Has FASD.  The stigma of this diagnosis must be overcome.  We have to break through these walls to help our kids, and to protect those yet to come.


P.S.  This is being posted on Father’s Day.  My sons and I are oh so very lucky to have such a great man in our lives.  I can think of no better way to celebrate Father’s Day than to reaffirm the joys of this (somewhat daunting) journey with a man we all love dearly.  He didn’t get a card, life’s a bit nuts, so here’s to you @FASD_Dad!

 

Stigma

Stigma.jpg

By @FASD_Mum

On 2 April World Autism Awareness Day was celebrated in ways big and small around the world.  It made me pleased to see the ‘mainstream’ rally behind this condition.  President Obama issued a proclamation that said in part, “Every person deserves the chance to reach for their highest hopes and fulfill their greatest potential…Today, and every day, let us reach for a future in which no person living on the autism spectrum is limited by anything but the size of their dreams ‑‑ one in which all people have the opportunity to live a life filled with a sense of identity, purpose, and self-determination.”   There were walks/runs/bake sales/educational ad campaigns. Mainstream schools wore blue for fellow students with autism.  In the UK a new tv series, The A Word, is featuring a family as it struggles to come to terms with the full impact of their son’s autism diagnosis.  It is fantastic that a wider group of people are learning about the condition, that kids are being included in schools and other opportunities.  It’s overdue to finally see those with autism recognized for their many talents and very encouraging to see emphasis put on the need for more research and deeper understanding of this still confusing condition.

But here is a thought:  FASD is believed to be as prevalent as autism spectrum disorders.  Now ask yourself, how many bake sales and walks/runs have you seen for Fetal Alcohol Spectrum Disorders?  How many kids with FASD do you know about in your child’s school?  I am willing to bet, none. Zero.  Zilch.  And yet, statistically, they are there.  In fact, many kids with FASD are misdiagnosed with autism, as our son was at first.

FASD is a spectrum of conditions that includes brain damage and a range of other physical disabilities, a condition that we know is underdiagnosed and widespread – a spectrum affecting as many as 2% of our children, and yet we as a society, as a community, ignore it?  Why?

Stigma.

This isn’t a condition with unknown origins. There is one cause for FASD.  And it hits us hard, right in the gut of our pub culture.

At some time a woman (who may or may not have known she was pregnant) drank alcohol (either because she wanted to or because she couldn’t stop herself) and that alcohol crossed the placenta and burned its way into her baby’s future.  With this condition the cause and effect are perfectly clear.  What is not understood is why sometimes the damage can occur with very small amounts and why in other instances even with a great deal of exposure the damage is not there.  People worry about the brain damage caused by the Zika virus, and accept suggested preventative steps, but no one wants to talk about alcohol and pregnancy – this 100% preventable major cause of brain damage.

As a result of not wanting to address the irrefutable, black and white, scientifically proven cause and effect, society ignores the need to help the innocent children, young adults, and adults with FASD.  To address the issue, we have to reexamine our own role in its root causes.  This is deeply uncomfortable for a society that prides itself on freedom of choice.

Every conversation in the UK about why more is not done to address FASD starts with, “We don’t have the statistics.” Every time parents seek help from professionals, from schools, from local governments, we are told, “We don’t know about FASD.”  “We don’t have services in place for FASD.”  “We weren’t trained in FASD.”  “We don’t have the funding.”

Well, why not?

Recently the US Centers for Disease Control took a leadership role and advised women of child bearing age to use birth control if they are having sex and drinking, and if they are not using birth control to avoid alcohol.  This common sense advice created an international media firestorm (fueled in part by their own ill-advised graphic designs).  FASD is only ever reported in the news when something like this flares up.  Suddenly any of us who try to support commonsense advice are accused of trying to patronize women, to take away their choices, to view them only in terms of their wombs.

Or the media responds when a really tragic case comes to the fore – an adult with FASD who is unable to read, a young adult with FASD who tries to murder his dad in a rage.  These tragic examples do exist, and are very sadly real.  But not everyone with FASD is affected that severely.

Most people have no idea that 2% of the population is potentially somewhere on the spectrum.  Most people don’t know that FASD can take many different forms, that quite often there is overlap with other conditions – that child you think has ADHD or autism may in fact have been affected by alcohol in utero.  Or maybe that kid who is always ‘trouble’ or that relative who is ‘irresponsible’ is walking through life with a hidden disability.  Without wider coverage of the range of the spectrum, people don’t see the problem at the less extreme ends.

The stigma and shame is hypocritical of a society that seeks to suppress the science and rejects the medical advice from the UK Chief Medical Officer, the US CDC and the American Academy of Pediatrics and other national and international expert bodies.  We can’t simultaneously refuse the advice and blame the women.  We can’t give half-assed ‘guidance’ and sneer at those women who admit to having had alcohol in pregnancy.  Those birth mothers who come forward are among the most determined and courageous women I know.  They stare down the stigma in their efforts to seek help for their kids.

The fact of the matter is, this issue crosses social boundaries.  Young professional women are among the growing population of binge-drinkers.  Whatever people think they know about women who have kids with FASD needs to be tossed out the window.  It can happen at that table where you, me or any of us are laughing, joking, flirting as it can in a darkened room where an abused woman is drinking to mask the pain.  It is never intentional.  But our societal ignorance is.

And let’s clear up something else.  It’s never the kids’ fault: not if they are born prematurely, not as they wrestle a little too hard at play group because their sensory perceptions are messed up, not as they push some kid over on the playground when they are overstimulated, not as they steal candy from the shop because they wanted to please a friend, not as they skip school to self medicate with drugs or alcohol, not as they get into a public altercation with a police officer as a young adult because they became so confused they lashed out, and certainly not when they confess to a crime they didn’t do because their brain filled in what they thought the interrogators wanted to hear.  FASD is a lifelong disability.  We need to talk openly and honestly about it.  Just because the kids grow up, doesn’t make their brains any less affected.  I am really tired of a society that cuddles kids with disabilities when they are toddlers but locks them in jail when they are in their 20s.

Yes.  Kids born with FASD grow up.  And if they do not receive proper intervention at a young age from parents and carers and schools and doctors and therapists and friends and family members who understand the underlying brain issues, they often grow up to have secondary issues that are devastating.  They often grow up to have addictions, trouble with the law, and lives filled with crisis.  Desperate lives, attempts at self-harm. Suicide.  Tragedy after tragedy can possibly be avoided with earlier intervention.  We are told there is no money, and yet no one says there’s not enough money when they slam the expensive prison door on a young adult who did not need to be there, a kid who was so medically misunderstood all his or her young life that he or she ended up in prison because we as a society couldn’t face the uncomfortable facts of FASD.

The good news is that across the UK, and around the world, there are pockets of parents and carers and educators and medical and other experts who are seeking to chip away at the stigma (please see the ‘resources’ section of this blog for some links).  There are courageous people like an inspiring birth mum we met who wiped away her tears, swallowed her pain, and told us about her daughter’s deeply tragic attempts at suicide and her subsequent successes at overcoming that dark period, marking 1-1/2 years of sobriety and pursuing positive life choices.  The mum had no idea that her daughter had been affected by her moderate drinking while pregnant until she learned more about FASD a few years ago. As a group we shared best practices, empathy, and hope.  Through this sharing of experiences, maybe some other kids may be able to avoid the worst of the valleys.  Through these sorts of informal support networks we amateurs are organically responding to a need that should really be addressed on day one of an FASD diagnosis by those experts who know how to support our families.

FASD – I will say it again in hopes the vast import of this statement sinks in – FASD is believed to be as prevalent as autism in our society.  By saying this, I don’t mean for a second that less should be done for those with autism, on the contrary, I believe more should be done for them.  And much, much, much more needs to be done for those with FASD.  Let’s toss out the stigma.  Let’s talk openly about it.  Let’s let our kids name their condition without shame so they can understand themselves and help explain their needs to the society around them.

It will take you, me, teachers, doctors, reporters, policemen, lawyers, judges, store clerks, bartenders, and most importantly of all the women staring into those wine glasses and pints and the men sitting with them, to get on board, to get informed.  We need to properly screen for FASD.  We need to lose the stigma, get the funding, and push our elected officials and the medical experts to provide the protocols and services needed to support the innocent and overlooked population of people who are on the fetal alcohol spectrum.  We all want our kids to have good lives.  A caring society does not ignore its most vulnerable.

My son did not do this to himself.   He is as innocent as a child who might have been run over by a drunk driver.  Don’t deny him his future.

There is a day some groups have designated as FASD Awareness Day – it’s 9 September – the 9th day of the 9th month, chosen to remind people to stay alcohol free for the 9 months of pregnancy.  And there are groups that promote positive awareness campaigns, like the Red Shoes Rock campaign.  But we need a wider platform for our cause.  And we need world leaders to issue proclamations for our community too.  Leaders speaking out on this issue can have great power to change lives, since FASD is one form of brain damage that is 100% preventable.  Our kids must be able to own their diagnosis, without stigma, so they can walk through this world with a sense of identity and purpose, to borrow President Obama’s words.

 

 

 

 

 

 

 

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.

 

 

 

 

 

 

 

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