Wrestling with “Death” is Tough for a Kid with FASD…and His Parents

we-love-a-child-with-fasd-5By FASD_Mum

I spent yesterday willing our dog to live, convinced it was succumbing to the heart problems that are common to his breed.  I dearly love the dog, don’t get me wrong, but first and foremost in my mind was how inconceivably impossible it would be to explain to our 12-year old with Fetal Alcohol Syndrome if something were to happen to his Christmas dog.

This dog has been perfect for our family from day one.  Our son wanted a dog desperately.  He wrote to Father Christmas specifically for one that wouldn’t “bark, whine, or whinge.”  Father Christmas had sent him a letter explaining that dogs are special gifts, and involved special procedures.  Like a scene out of “Miracle on 34th Street,” this Christmas magic seemed predestined – there we were meeting Noel (amazingly, that was his name), a Cavalier King Charles Spaniel that had been rescued from doggie-death-row in Ireland.  Miracle of miracles, this dog was silent (just like our son had been when we adopted him).  He was calm, unflappable, and oh so friendly.  He was instantly one of us.

They bonded very quickly but we realized early on that our guy was not going be able to be the main carer for the dog.  We had to make adjustments to expectations as our house has grown more chaotic over recent years with some escalating behaviours.  We no longer leave Noel sleeping in our son’s bedroom because despite how sweet it was to see the two of them sleeping side by side, the mornings were unfair to Noel, when our son would be too hyper before his medication kicked in and the dog would get too wound up.   Sometimes we have concerns that such a small dog might get hurt during a meltdown, so we are always aware of where the dog is, and often shift him to different rooms if things are heating up.  Sometimes the dog also ramps up the moment, as he has certainly learned by now how to bark, and his eagerness for walks makes our front door hallway a scene of mayhem sometimes. (This, because our morning routines are not routine any longer.  We cannot know on a given day if our son will go to school on time, if we can get him to walk or if he needs to be driven, etc.  So the dog never knows if he will get an early walk on a given day and puts in his vote strongly at just the time when we do not need more noise.)   Despite his confusion, the dog is still uncannily good-natured, and remains a favourite at the school gates.  Our son proudly shows him off, telling his friends for the umpteenth time that this is his dog, and his name is Noel.  Noel went missing once – that night was one of the longest around here in a very long time. Though we found out later he had tucked up safely in a shelter all the while, that fear of losing him was etched into our son’s being.

As our son gets older, his anxieties are deepening, or at least he is able to vocalize them now.  He lives in fear of Noel disappearing again.  Every walk, every time the door opens, our guy panics, lunges for Noel’s collar – sometimes tackling him with a full body hug.  We had been to a field in the two days prior to this mystery illness.  Our son has been extremely unsettled lately-partly due to a cold but more so due to increasing challenges at school.  He was panicking as the dog would sniff along the tree line, worried he might disappear into the overgrowth.  Of course, needless to say, as I was dealing with one of my son’s outbursts, the dog did in fact wander into the woods.  Sheer distress overwhelmed our guy.  The dog happily came when we called, tail-a-wagging, but my son was devastated by the experience.  The next day he was almost crying when I let the dog off the lead, begging me not to let him wander away.

So, no, I could not contemplate a world in which this dog would leave us so soon.

Uncharacteristically, the dog didn’t budge from one spot on the couch for more than seven hours.  He was barely able to open his eyes when I called his name, giving a half a wag of that tail that usually never stops.  I could see the worry in our older son’s eyes.  I probably should have called the vet sooner, but I was becoming convinced this was heart failure, though I didn’t voice that, and I doubted there was anything they could do – nothing that we could afford anyway. My dad had heart problems.  Our minds do strange things sometimes.

I admit it, I was worried.  Very worried.  And yes, I literally curled up around him for more than an hour – maybe closer to two – hoping my presence next to him might give him strength, pretending to be part of the pack.  It may sound silly, I am not necessarily one of those people who invokes Mother Earth, but I was running on instinct, and I believe in the power of love.  It was all I could think to do.

As it turns out, antibiotics have more power in this case, as an evening visit to the vet demonstrated.  But that was only after a very long day.  My son had a meltdown after school – his reaction, I think to the dog being unwell.  A good friend had come by to help calm the scene (my husband is traveling, I am flying solo, we all have colds, it has been a hell of a week – and when I say that, I mean it).  My sister-in-law (the other Auntie you don’t hear so much about but who is equally supportive) had come by to give a second opinion on the dog.  She was the nudge I needed – she literally dialed the vet and handed me the phone.  She drove us over, and was another set of ears while my overwhelmed brain was catching only half the words.  It’s not the dog’s heart, which is a huge relief.  There is some sort of lump in his throat, but not something stuck in his throat.  It’s unlikely it’s the c-word, though we won’t know for certain for a while.  He had a raised temperature, so we are thinking it is some sort of infection.  The vet dosed him up with painkillers and antibiotics, and I have literally been slowly spoon-feeding this dog while whispering gentle encouragement.  Not yet, sweet dog, not yet.  We need you.  Our son needs you.  Not this week.  Not while our guy is struggling so hard.  Not now, please, please get better.  Willing this dog to eat.  Willing him to recover.

For some reason our son’s English class is studying the Titanic.  For a kid who has a morbid and not particularly healthy fascination of floods, storms, disasters – this story has captured his imagination in a way few subjects at school do.  He is watching and re-watching clips on YouTube, he plays the song over and over again – having learned about its composition.  He asks Siri how old Leonardo DiCaprio was in a given year.  And he ponders mortality.  In the darkened bedroom the other night, when I thought he was asleep, I heard, “I would so totally die if I was on the Titanic.  How old are you when you die?  I miss Grad [his grandfather who died several years ago].  How old was Grad when he died?  What year was he born?  What year was Bebe [his vivacious grandmother] born?  What year were you born?  What year was Daddy born?  What year was I born?  What about my brother?  Why do we die?”  Trying to overcome his inability to wrap his head around time and math, he was struggling with some of those existential questions we all wonder about, but in his own unique way due to his FASD.  His fears were magnified by the fact he could not quite grasp these concepts.  He was in a loop, going over and over and over in his mind, trying to understand when and why we all will die.

When my sister-in-law and I headed off to the vet with the dog, our friend took our son to her house for a sleep over.  We are so lucky to have such a support system, this impromptu change of bedtime plans on a school night could easily have sent our guy into orbit, but he was great (though I predict I will pay for this today after school).  Our friend and her young daughter who is one of our son’s few true friends are lifelines.

So, thankfully, our guy did not see the dog’s massive drooling, his inability to eat food.  Our son did not hear about the lump.  He didn’t see the food scattered all over the floor because our dog cannot eat properly yet.  Hopefully by the time he comes home from school, the dog will have recovered to such a point that we won’t trigger the very worst of the fears.  And thankfully the dog does seem better today, he has more of his sparkle back.  He has eaten more, though he has not left my side.

Our son is a stress sponge.  Even if he cannot name it, or even fully understand it, it was not a coincidence that all of those things from his bedroom were thrown down the stairs yesterday.  It was not unrelated.  Sometimes my head cannot handle it all, especially when I am feeling under the weather myself.  My cold has deepened, and yes the drool had me gagging over the toilet, such a glamorous life sometimes!  How do we – do I – juggle all of this:  sick kids, sick dog, a house that is a disorganized mess and getting worse (knowing how badly this affects our son), stresses over work, stresses over the level of stress, trying to switch our son to a special needs school, so much paperwork, so much to remember, new appointment letters coming through the door at rapid rates, phone calls we have not yet returned, requests for media interviews as we become more vocal about all of this, so much of life’s minutia that we seem to miss as we deal with Big Issues Every Single Day…???

The pressures are immense when trying to help our son navigate this world.  Some things we can smooth over for him.  Some things we can adjust and adapt to the way his brain works.  Some things we can redirect or hide away.  But there are other things we simply cannot change no matter how much we would like to ‘fix’ them.

For me, I am a better person for learning these hard lessons.  I know that.  I own it.  My ego has taken more than a few hits in the years of parenting this child (both kids, really, but this blog is about FASD).  I am humbled time and time again to learn that while there are many things I can do to help, I cannot alter the fact that our son will experience this world in a much harsher and harder way that I would ever have wished for him.   The adults with FASD from whom we learn so much always say that he will have to live his life.  A hard thought, but they urge us to remember that these early years and the values we live and teach will always be inside him helping him to find his way.  I know that.  I do.  I know that.

But, damn.  As I laid there on that couch yesterday, wrapped around this tiny, sick, furry, fluff ball pretending to be mamma wolf or something, I wasn’t ready yet to have to tell our guy, during one of his worst months ever, that I couldn’t fix his Christmas dog.  Not yet.  Fingers crossed, not yet.


P.S. – Here is a clip of our son and his Christmas dog from a year ago…to show just how strong the bond is between them….I  know it will make you smile.