The Coming Summer Holidays Cause Anxiety For Our Son With FASD

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

“Mummy, I can’t stop my body.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

The Power of Words

Words2

By @FASD_Mum

Be quiet. Sit down. What are you doing? Stop. I said no! Don’t be rude. Stop doing that! Sit still! Put it down. That’s enough! No! Don’t bang that. You’ll break it. Put it down. Now! Stop. Immediately! Why are you doing this? Stop! I’m losing my temper! What did you just say? Do you want me to take that away? I said no!  Don’t hit! That hurt. Stop it! No you cannot do that. Did you just try to bite me? What are you doing! That’s rude. You’re not allowed to say that. I said no! You can’t do that. That’s enough! Put it down or I will take it away. Stop! It’s going to break! Why did you do that!  Ow. You’re out of control!  Just get out of here.  Leave it alone. I said go upstairs. Leave, now. I said no! Stop hitting! Stop spitting. That’s rude! Don’t do that!  I said be quiet! No!

Some scenario like this has played itself out in our house many times a week for the last few years.  It used to be worse.  Recently it is better.  We are not alone.  These scenes happen everywhere.  All parents will recognize the ineffective pattern.  We all do it.  But parents of kids with Fetal Alcohol Spectrum Disorders will look at this differently because once kids with FASD are on this spiral, it can lead to a full-on, literally out-of-control meltdown of epic proportions. As the kids get older things get more dangerous and more difficult. Our 11-year old son can already overpower me.  These moments are overwhelming, intimidating and extremely hard as a parent to rise above, especially when the other side of that conversation is a tirade of words that might curl a sailor’s toes, back-talking that would make our grandmothers hyperventilate, and physical aggression that can often be aimed just where it hurts, as my husband knows well.

Even before our son’s diagnosis at the age of 10, I frequently said to my husband that I was worried that our son heard too many negatives from us every day – hundreds of mini-corrections and subtle and not so subtle reminders to him that what he was doing/thinking/wanting/attempting/ saying was not right, not okay, not good enough.  I was aware, and am still aware, that his experience of us as parents is much, much different than that of our eldest (non-FASD) son – who we could jolly along into good behavior with a look or the occasional warning and very infrequent time out.

All those “no’s” build up over time.  They have to hurt a kid’s self-esteem.  All those times when a kid looks up and sees only frustration, anger, impatience, disbelief, and fear on the face of his or her parents – all of those times have to sink deep into a kid’s soul.  If that is how the person who loves me most sees me, I must be pretty bad.  They don’t look like that at my brother.  He can’t explain it and he can’t understand it.  But I know our youngest feels this.  I will bet every kid with FASD has seen that look one someone’s face, probably more times than any of us will admit.  That makes my heart ache for these kids.  They did nothing wrong. They simply survived in a womb where alcohol crossed the placenta and did the damage that made them unable to handle this moment, this today, this situation.  And those kids who are told they are wrong or put down thousands of time a week grow up to be adults that are too often marginalized and misunderstood and still put down.

An extended family member in the US who is a policeman shared a video that shows how few seconds the police have to decide whether or not to shoot when someone they stop reaches for an unidentified object.  It deeply disturbed me, as they learned later that the person who was killed in seconds by the 9-10 rounds fired by two police officers was schizophrenic and bipolar and the item in his pocket was a spray attachment for a hose.  The way that man stood there, frozen, staring blankly at them as they shouted for him to get down – I have seen that look in my son’s eyes.  I recognized that slow motion as he started to take the thing from his pocket, maybe to show them it wasn’t a gun, or maybe he was locked in some fantasy world and not understanding the danger.  But the blankness – it made me fear again for my son and reminded me how urgent it is for us as parents to teach our kids when they are small how to start to recognize their need for help, how important it is for us to give them words to say and permission to say them.

But the reality is, it’s hard enough to get a diagnosis, let alone to get help and guidance on how to parent a kid with FASD.  None of us wants to yell and to scold.  But we know our kids need to function in this world and we know this behavior will not cut it.  There are dangers out there for them if they don’t behave in certain ways.  And we simply are at our wit’s end.

So, though I am no expert, and we don’t have anything close to a perfect parenting style, in case it might help someone out there, here are a few specific ideas we have learned from people and websites and other parents that have helped us in recent weeks to de-escalate a potentially tense situation.  There are many more strategies out there (see here and here for additional resources).  These are just a few ideas that are easy to implement.

  • React as if your kid is half their age. The first point is to remember kids with FASD are functioning at an emotional and/or developmental age that can be about half of their chronological age.  So, looking again at our 11-year old who is currently on all fours on the floor pretending very loudly to be a cat, we remember it can be kind of funny for a five- or six-year old kid to do that.  And maybe his insistence on wanting that extra chocolate bunny ear for breakfast isn’t so out of line for a five-year old.  We hear that by the time kids with FASD hit their mid-20s this can start to even out.  So the way I look at it, we have a critical window of time to deal with, we have to somehow ride out the hormonal wave and the huge unpredictability of the next 14 or 15 years.  We need to nurture his self-esteem so that he will withstand the offers to find other ways to feed his insecurities via drugs or alcohol.  We need to help him understand himself, and lay the groundwork so one day he can be aware of the kind of support he needs, so he can ask for help when he needs it (or even before he needs it).
  • No no-s. Don’t say don’t.  Susan Fleisher, the founder of NOFAS UK, told us she eliminated the words “no” and “don’t” from her vocabulary when she was raising her daughter.  Finally – a suggestion that is practical, helpful, and relatively easy to implement.  And guess what – it works!   We have been learning how to use different words – you would not necessarily hear that above conversation in our house any more.  Thanks for showing me that chocolate bunny ear. That looks yummy doesn’t it?  Is there something else you can eat now that is healthier? Can I help you? You can have that, later…
  • Be aware of the brain. We have also taken to heart Diane Malbin’s insights about understanding behavior as a symptom of underlying brain issues.  We have learned to be conscious of our son’s need to have more time to process instructions, especially when he is in a loop or fixated on something.  We quietly repeat the same instruction, rather than coming out with a full string of additional comments and threats as in the initial scenario.  We back away, we give space.  We use affirming words.  We don’t take this as an insult to our authority or an affront to parental control.  We understand that to parent this child means we have to use different strategies, different words.  Our older son, family members and friends know this. Adapting our strategies and meeting his needs makes us good parents, not failures, no matter what someone might think if they see us “ignoring” the fact our child just called us extremely rude names.
  • Meds?  It’s also true that medications can sometimes be a part of the equation when thinking about how the FASD brain works – in both good and bad ways, as we have learned.  Our son takes ADHD medications, a dilemma we have written about elsewhere.  We are able to speak openly and honestly with his pediatrician about our concerns.  We check in with her frequently about this, as things can change.  Medication helps our son to focus in ways that he simply cannot at this point when he is not on the medication.  But some of the medications fueled some of the worst aggressive behaviors, especially when “rebound effects” were making him incapable of controlling himself when the medication was not in his system.  He was literally upside down and in our face.  I suspect a lot of people having trouble with their kids might benefit from a new discussion with the doctor about the potential benefits and drawbacks of medication if none are being used or the possible side effects of medications that are being used (and these change over time).  Diet and exercise also affect the brain in many ways. Our son was climbing the walls after squirreling away packs of Monster Munch.  I knew it had to be related.  Reading the fine print, we found MSG as one of the ingredients, we have long tried to avoid MSG for this very reason.
  • Positive phrases. Now when he starts to unravel, we try positive phrases.  We try to get to some “yes-es”.  (And avoid ‘no-s’ as suggested above).  We try to re-direct. Instead of the initial conversation above, we now say:  I see you are upset. You’re upset, I see that.  Are you upset? Can I help you? I want to help you.  Can we put this down? Let me help you put that down. Can I give you a foot rub? Would that be nice?
  • Create a calm zone. We have made his bottom bunk into a calm zone – with curtains around it.  He has music there, and a calming “glow pillow” and a heavy fuzzy blanket.  (Any corner of the house could be a calm space, even under a table with a blanket over it or a pup tent.)  He is encouraged to go there whenever he is feeling the need.  It’s not a punishment.  He can go there even if that means he walks away from us when we are trying to get him to do something.  It’s a safe zone for him.  And when he is there it gives us time to cool off.  If he doesn’t go there, sometimes we just literally leave the room for a few minutes to give him a chance to self-regulate, or just sit nearby, silent.
  • Give them the words. We adapted an idea from the book Liz Kulp wrote as teenager with FASD.  We have an agreed ritual, to help our son get used to asking for help in those moments.  We agreed in some calm moments that we would do this game.  He is supposed to say “Mummy, I need help.”  I say, “I will help you.  I love you.”  He says, “I love me too.”  I say, “You’re a good kid.” He says, “I’m a good kid.”  Now, in reality I often have to put my hands firmly on his shoulders, maybe when he is on the floor getting ready to kick me, and say “Do you need help?  What do we say?”  And I have to ask him repeatedly, using those words.  But there has never been one time when that did not work eventually.  I encourage you to read Liz Kulp’s books.  It was an awesome moment when I showed him some of the handwritten blurbs in the book.  See?  She is just like you, she knows what you are going through.  She wants to help other kids.  Isn’t that great?
  • Love them. Shower them with your love.  Start every day with a cuddle, end every day with a kiss.  Tell them you will always be there (and mean it).  Tell them you will move the earth for them if you could.  Tell them you know they are different, and you love them anyway.  Tell them things will get easier.  Let them know they can come to you always – tomorrow and tomorrow and the next day and the day after that.  Tell them you will help them with their problems, even if they are really big ones.  Tell them they will never be alone.  Even when you walk them back to the shop they just stole candy from, you will be there.  You will help them.  Laugh at their jokes, get on the floor and act like a younger kid too.  Scratch their back, rub their feet, make bubbles and find anything else that can make them smile.  Every day, find some joy.  Be their joy.  Guide them toward tomorrow.  Remember, as one great Facebook post said, “Because of you, there is a human being walking on this earth who doesn’t have to ask for love—it is just given; it is given.  Think of the significance of that for a moment.”  I love that quote.  Don’t we all just sit a little taller as we read that? Why? Because it’s true.

I hate sounding preachy.  I am not trying to be.  I feel humble and overwhelmed sometimes by the enormity of challenges people with FASD and their families are facing.  I know it’s hard.  I know in our house we are not having the most difficult experience that FASD can pose.  But it’s not exactly easy here.  I choose to be positive because the alternative is impossible to imagine.  Our son needs us to be stronger than we ever thought we could be.  We try.  We all try.  He tries hardest of all.  I think we all have to stop and recognize every day how hard our kids do try to break through those communication barriers, to wrap their brains around things the way society wants them to.

But I will be damned if our son gets shot some day on some street because he didn’t know how to ask for help, didn’t see his way out of a corner, didn’t trust the authority figures around him.  I feel urgently that we have to teach him those words now that will help him out of a bad spot.  Today, now, in our own home – we have to let him know it’s ok to ask for help – always.  What if that guy I saw in the video knew to yell, “I need help!”  “Please, slow down so I can think!”  “Please give me time to think.”  Would he be alive today?

Our son has to learn it’s ok to admit he has a hidden disability, that it is nothing to be ashamed of – that he can say the words, that we can say the words.  He can tell people he is struggling, that he has FASD, that he has a brain injury.  We have to teach him to trust that people will help him.  In my mind, giving him space at home to come to terms with all that he is, that’s possibly the best way to ensure he will have a chance out there.  And as parents and carers, yes, it means some days we just have to suck it up, breathe deep, let the words roll off our backs, and look into our child’s eyes with unchanging love even as the world seems to be crashing down.

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The Power of Words – PDF for downloading and printing

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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.