A difficult conversation

Do you love someone who might have been affected by alcohol in the womb?

By @FASD_Mum

As parents to a child with Fetal Alcohol Syndrome, we have chosen to focus primarily on helping people to better understand this condition and the needs of those with Fetal Alcohol Spectrum Disorders.  The prevention discussion is important and yes, at times, we do jump in on that topic, too – like last week when there was such an overreaction to the CDC’s graphics.  Now that the CDC graphics have been revised, hopefully attention will focus on the core advice, encouraging women to use birth control if they are sexually active and drinking to avoid the risk of FASDs.  This blog is devoted to showing why that matters.

As we learn more to help our own son, we hope our family’s experiences might help others avoid some of the long years we spent not knowing what was wrong with our son and how we can better support him.  Now that we know what we know, it seems like there were signs that should have tipped off someone that our son’s problems were not just sensory, not just behavioral, but due to fundamental structural issues in his brain.

With this post, I want to reach out for the sake of some other beautiful child who is out there somewhere in this world – maybe it’s a child you know, maybe it’s your kid – a child who is shining brightly but who too often goes through his or her day misunderstood, confused, frustrated, ‘in trouble,’ angry or overstimulated.

Ideally, I would want to be holding his parents’ hands and looking into their eyes so they can see my empathy (without accusation) while I ask them to think of things no parent should ever have to think about.  I want to reassure them that if in fact what I am asking them to think about is true, the sun will keep sparkling in their child’s eyes, his laughter will still be the best sound they can ever hear, his sweet kiss will always bring them a feeling of tomorrows and futures and hope.  Nothing we might talk about will change that.

I want to ask a question that can perhaps open doors for their child’s future that might otherwise be closed, a question whose answer can perhaps provide that missing link that people have been searching for when trying to better understand this beautiful being and her shifting, sometimes stormy moods.  I want to ask a question that I know may put someone on the defensive, when what I most want to do is reach past those defenses and lend a helping and reassuring hand.

I want to ask carefully, quietly, respectfully the one question that could unlock the brighter tomorrows we all want for this wonderful child:

“Did mum drink during pregnancy, maybe even before she knew she was pregnant?”

This is not a judgmental question.  I am asking everyone to set aside whatever stigmas might hold back this conversation.  If the answer is 100% “no,” then I am glad it is possible to move on to other options for what might be causing their child some difficulties.

If their answer is in their heart of hearts, “yes, mum did drink during pregnancy” (maybe a little, maybe a lot) or if the answer is “0ur child is adopted/in care and we simply don’t know,” then it’s time to explore further questions. Please hear me, I am not judging.  This is not about blaming anyone for anything.  It’s about helping this wonderful little soul.  It’s a conversation I wish someone had with us several years ago.

I’m no expert.  But if I were sitting there with these parent(s) or caregivers, these are the questions that I would ask, to open up the discussion.

  • Does your child get overstimulated easily?  When you are out in the grocery store, when there’s loud noise, or something doesn’t go the way he expected, does he ‘flip out’ or have extreme tantrums you don’t know what to do with?  I mean extreme – do these moments seem wilder and longer than you might expect?  Do you feel bewildered, unable to ‘control’ the outbursts, does it seem like everything you do doesn’t help? Does he sometimes kick and bite and shriek?  Does he strike out sometimes like a cornered cat?
  • Or does she switch off sometimes, get a ‘blank look’?  Does she retreat, maybe into small spaces, under blankets, pull clothes up over her head?
  • Does she get stuck on one thing over and over and over again? Does she sometimes repeat sounds, is she ‘fixated’ on certain videos or songs?  Does she have unusual things that she likes, things that she comes back to again and again?
  • Are there toileting problems?  Does he bang his head? Rock to calm down? Does he pick at, poke, or bite himself, sometimes until he bleeds?
  • Does she seem unable to link cause and effect?  Are time outs hopeless, drawn out, and unproductive for your child?  Does she have trouble remembering why she is ‘in trouble’?
  • Does he have royal meltdowns coming and going from different places? Is it sometimes impossible to get him to put on his coat or his shoes when it’s time to go?  Is it absolute ‘chaos’ trying to get out the door for school or nursery?
  • Does he just not ‘get’ time – does he seem not to understand the difference between five minutes and 30 minutes and next week and next year?
  • Does she have a strong reaction to whether it is light and dark, or too smelly or too scratchy?  Does she hate wearing socks that are too tight, tags on clothes, or do you have battles because some clothes feel funny?
  • Does he have trouble ‘relaxing’ or just sitting still? Is it hard for him to focus for long stories?  Does he lose track of the story, does he ‘miss the point’? Does he take things very literally, get confused if you make an analogy?
  • Does he have great trouble falling asleep?  Are nap times and bed times battles?  Does he ‘rev up’ when other kids would wind down?
  • Does she get easily sidetracked if you tell her to go into the other room to get something? Do you find her later wandering around or doing something else, having completely forgotten what you asked her to do?
  • Is he hard to console? Does he get ‘hysterical’ at times when you don’t really understand why?
  • Does she have other physical conditions, like trouble with the spine, hips, legs, trouble with motor skills?  Does it seem like she needs to jump around a lot? Does she need to feel a lot of pressure to comfort her?

Of course every kid has a little of these sorts of problems. I am not implying that a positive answer to any of the above is reason for extra concern. The terrible twos we all dreaded are real and rarely confined to the ‘twos.’

I am talking about extremes.  Is your kid is always ‘the handful’ – the one that people shake their heads about, the one who you can’t quite get to do what you want her to do?  Are you at wit’s end trying to figure out what’s going on?

I am speaking directly to your heart: IF you answered ‘yes,’ mum did drink alcohol (any amount) while pregnant (maybe even before she knew she was pregnant) or your child is adopted/in care and you just don’t know, and IF when your read some of those points above some of those hit home (it doesn’t have to be all of them, or even most of them) – not as in a ‘yeah there was that one time when’ kind of way but in an ‘Oh my, YES, that happens ALL THE TIME’ kind of way, then maybe you might need to consider, for your child’s sake, that there might be more to these difficulties in self-regulating than the way you parent or whether he has had too much sugar in a day.

There may be something deeper, something structural, something that is just a little too much for your parenting skills to handle alone without further information, further medical help.

I remember a day with our son when he was about three or four.  We were sitting on the floor, playing with blocks, and counting.  I was playing a game, adding one block, taking one away or some such very basic math concept.  And he kept blithely stacking them up without ‘getting it’.  I tried it several different ways to show the concept and still it did not register.  I remember looking up at my husband and saying, “He’s not understanding something fundamental here.  Something’s not right.”  I couldn’t name it, but I felt it.  I knew it.

Or the time in the car a few years later when he was so thoroughly out of control, screaming and kicking and flailing at my husband while driving.  I had to use a full body hug to keep us all safe.  We were all a little shell shocked after that one.  It wasn’t ‘normal.’  We all knew it, but didn’t say it.

There was a Christmas when he was still little, a nightmare of a day when all he wanted to do was spin the shiny balls on the tree and open shiny presents.  He could simply not wait any longer for dinner, could not handle the sights, the smells, the anticipation, the lights.  He was overly agitated, unnaturally hard to console. So we ended up sitting on the steps, rocking together.  Something wasn’t right.  We all knew it.  We couldn’t name it.

Moment by moment, day after day, the concerns grew.  In the shopping centers, walking to school. Later, as he grew older, we began to have different insights once his words started to show the depths of his confusion about some things. His learning was patchy.  He is great at some things, and other ways he was years behind his age, especially emotionally.  We always knew there were sensory processing problems.  We always knew there were speech and language delays. We got through it, with the help of a whole slew of therapists, doctors, and eventually teachers.   We knew there were problems with his feet and his legs and his spine and his hand.  We knew he was small for his size.  We had been tracking his small head circumference for years.

And then, finally, when he was ten – after genetic problems were ruled out for the third or maybe fourth time, after an improper (or incomplete) diagnosis of autism, after we worked for a few years based on his ADHD diagnosis but still weren’t addressing all of his difficulties – finally our son was diagnosed with Fetal Alcohol Syndrome, one of the Fetal Alcohol Spectrum Disorders.  FAS kids are the ones on the spectrum who have the ‘look’.  The ‘look’ we and whole teams of professionals saw past for all those years.  When our son was measured, he scored 100% on the test of the facial features and still they/we did not catch it.  (I should note, our son was adopted without a complete maternal medical history, which complicated and delayed his diagnosis.)

We love our son dearly.  In our effort to try to help him by loving him so hard we missed somehow – as did that whole slew of professionals who I don’t fully forgive – the single most important thing that could help him most.  We missed the chance to fully understand the root of his behaviors, the ‘why’ behind his confusing actions.  But now we know and his prospects are now much better.

When a pregnant mum drinks alcohol, it passes the placenta to an embryo/fetus- every time, and each phase of development has risks.  While a mother’s liver can filter out the alcohol, the embryo or fetus cannot and alcohol can stay in its system for up to three days.  Alcohol is a teratogen, a substance that causes lasting damage to a developing embryo or fetus, worse than heroin, worse that crack.  The scientists don’t know exactly why, but sometimes it has an effect, sometimes it doesn’t.  Most of the damage is done when mum is drinking a lot, but it is also possible for even low amounts to do damage depending on many unknown variables. They are learning more and more about the early part of the first trimester and the possible damage that can be done totally unknowingly before a woman might even know she is pregnant.

I want to say to those loving parents/carers, I am sorry to bring these thoughts into what should be your child’s sweetest days.  I am sorry to add worry when I know you already are worried.  I am sorry that our society does not make it easier to talk about these things.

I want to tell them, starting now there is much you can do to assure yourselves.  The first, very first thing you can do is bring your child to the pediatrician and talk, really talk, openly and honestly about the pregnancy and whether or not mum drank anything at all from the very first days before anyone knew she was pregnant, through to the end of the pregnancy.  You need to ask the pediatrician what they know about Fetal Alcohol Spectrum Disorders – not just Fetal Alcohol Syndrome, but the 400 other conditions that can co-occur with FASD.  If they don’t know much, find someone else who does, visit a specialist clinic, google or contact a national organization for an FASD support group near you and ask those parents for their suggestions of experts in your area. Unfortunately, the training professionals receive is not always up-to-date on FASDs.

Do not let a doctor turn you away just because your child might not have ‘the look’ – very few kids on the spectrum have those facial features which as it turns out relate to specific damage done during only a very few days in early pregnancy (and even those kids who have ‘the look’ outgrow it).  Despite what some doctors may tell you, facial features are not the only indication of alcohol related neurological deficits.  Ask for an FASD evaluation by qualified experts – too many kids are misdiagnosed.  Even our son, who did in fact ultimately measure for 100% of the facial features, went undiagnosed for 10 years.

If the experts think this is worth further exploring, go into high gear.  Educate yourself, instantly start reading about and implementing FASD parenting strategies.  We wasted a valuable year and a half from when this was first raised as a possibility and when we finally got the diagnosis.  The fact is, the brain structure of kids with FASDs is different.  The typical neural pathways have been damaged.  As a result, traditional parenting strategies do not work.  You will need to readjust things in order to create an environment that will be more manageable for your child.  You will need to get the schools to think about strategies for both primary and secondary schools.

You will learn that for some kids time outs are a total waste of time and are counterproductive.  You will learn there are many ways you can help your child by avoiding overstimulation.  You will learn the ways to structure the day to avoid confusion and meltdowns.  You will learn ways to reinforce your child’s learning visually and you will understand the need for small, direct, literal sentences.  You will learn with relief a great deal about how those ‘tantrums’ are not the result of bad parenting or a ‘naughty’ child. They can be caused by underlying physical realities inside your child’s head.  Kids with FASD have a serious physical disability.  Just as if they were missing a limb, were blind, or deaf, kids with brain injury need certain accommodation and support to help them achieve the very many wonderful things they can achieve.  The world opens up again for them once people around them – at home, in schools, in families – understand they are seeing the world through a different lens.  The damage, I am so sorry to say, is irreversible, but there are tools to help your child cope better as they grow. I firmly believe the new technologies in our world will immensely help the generation of kids being diagnosed today, so their futures can be even brighter.

I want to hold those hands and look into their eyes and say, “You are not alone.” According to the CDC, 1 in 20 kids in the USA alone is somewhere on the FASD spectrum, in the UK some experts put the figure at 3-5%.  We need to get better about understanding it, diagnosing it, working with these kids in appropriate ways to maximize their potential.

There are way too many adults walking through this world who have undiagnosed FASDs.  Truth is, we don’t really know which of our friends, colleagues, family members are affected – those who have always struggled, maybe got into trouble, those people who can’t seem to get themselves settled without a great deal of help, they may be walking around with an undiagnosed FASD.  There are some amazing adults and young adults with FASD, some of whom received diagnoses as adults, who provide great hope.  And they are the first to say how much different their lives would have been if they were properly diagnosed, if they could have avoided spending some of the hardest years of their lives never really understanding why things were so hard for them day after day after day.

Forget the wives’ tales.  Forget what you think you knew about alcohol and pregnancy.  If you know mum drank at all when she was pregnant (or before she knew she was pregnant), and if you have some concerns about the development or behavior of the child, (or young adult or adult), then get advice from a doctor.  You would not hesitate to take your kid to get tests if you feared a concussion.  Go find the answers.  If there is a chance your child has this hidden medical disability, facing this now could make a profound difference in his or her life.

Do not fear a diagnosis, fear the alternative.  Fear a lifetime for your child of confusion, frustration, self-doubt, depression, maybe other problems with a System that doesn’t understand his or her needs.  (I am not going to list those here, you will hear them soon enough.)  Don’t fear knowing, fear not knowing.

I want to whisper to that sweet child, “You will be okay.  You have done nothing wrong.  Your parents will get you the help and support that you need.  As you grow older you will better understand all of this.  You may be different and you may have to try harder than most other kids.  But you are beautiful, you are loved, you are special.  Your parents will help you.  Just keep shining.  Keep on shining beautiful child.”

 

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