Raising a Child With FASD Has Made Us A Stronger Couple

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By SB_FASD

Today is my husband’s birthday. He bought his own presents.  He didn’t wake up to coffee in bed. There was nothing – I didn’t even manage to wrap the presents he had sent to himself via Amazon.  Really, it doesn’t get more pathetic than this.  But I have my excuses.  We were at the school yesterday for a couple of hours.  Our son has been home half days because he is struggling in this post-operative week.  As a result, we have been juggling work commitments, balancing the needs of our elder son (who has Chronic Fatigue Syndrome/ME), and – I kid you not – a dog with a concerning cough.  Life is – as usual – happening fast and furious. We are as ever facing our days left-footed.

I explained to my husband yesterday that I needed more time to wrap things, that I hadn’t actually managed to do anything to make his day special.  He smiled at me and gave me a hug.

That’s when the thought struck me – this FASD journey affects our expectations of each other too.  We have all had to change the way we look at this world.  It is not just about changing how we interact with our son with FASD.  It is also how we interact with each other.

FASD has been brutal on our marriage.  The unpredictable flare ups.  The chaos.  The what-on-earth-do-we-do-now moments.  The concern.  The defensiveness. The tiredness.  The stresses. The depression.  The alternating moments of determination and fatigue.  The feeling that whatever we do is never quite good enough.

The times when we have entirely different instincts on how to handle a situation.  The times when we hit a wall and need to shout, and rather than yelling at a little one, we aim those words at each other because that’s the ‘best’ option in a horrid situation.

Yes, FASD can tear at relationships.  Like water dripping on solid rock, each of these tense moments leaves its mark even on the strongest of relationships.

And yet, here we are.  We’re still standing.  Somehow.  And we are better than we were before.  Perhaps not as obviously shiny and happy as we once were in those days when we were courting.  We were an older couple to start with.  Maybe because we weren’t kids ourselves, we have always been grounded.  Though once upon a time we were carefree enough to hop on airplanes with the blink of an eye to meet each other, to visit others.  We had flexibility and funds.  We were living the life.

Children were a precondition.  I remember standing on a bridge early in our romance, laying it out – saying although it was awkward – that I had to know if he saw children in his future.  I was in my mid-30s.  I was confident enough not to delude myself that this was a question that could wait.  I will never forget the feeling of elation I had when I realized he too wanted children, a family.  We were engaged soon after.  We even talked about adoption at that point (before we had trouble conceiving our first child, including a horrible possible ectopic pregnancy/miscarriage, before the frustrating infertility when it came time to try for our second).  My husband is adopted.  I always said I would adopt one child for every child I gave birth to.  It seemed natural for us to complete our family via adoption.

We had already decided we could raise a child with disabilities when we refused the tests during my pregnancy, despite knowing we were in a high-risk category.  We didn’t shy away when we realized early on that our adopted son was likely to have developmental issues.  We knew, or thought we knew, what we were getting into even if it would take several years for our son to be diagnosed with FASD.

But did we know then how our social life would erode?  How those lovely meals out and trips to the movies, to the theatre would evaporate?  Did we know we would be so bone tired every night we could barely decide which TV show to put on, forget about long meals laughing over candle light like we used to?  Did we know that we would stop traveling together, that our health would deteriorate, that we would take such shortcuts with each other?

There was no way we could have known.

But I am not writing this as a downer.  I am writing this because of the beauty of the moment yesterday, when I told my husband I hadn’t managed to get him a card nor had I even wrapped the presents he bought for himself for his birthday.  That moment when he understood.  That closeness that we have that goes beyond the flirtations of a night out on the town.  That hug by the coffee pot this morning when he jokingly asked where his presents were.

We have always said that we will be great sitting in our old-age rocking chairs side by side, making snide remarks about the state of world affairs.  We are becoming people, through this journey, that we never knew we could be – deeper, more ‘real’, more compassionate, more questioning of ourselves and our expectations than we might ever have imagined.

We have been washed over by a love that is stronger than we could have envisioned – fierce in its protectiveness of our children.  We have learned as a couple to find sustenance in the awe that we share of our two amazing children who show us every day what courage is, what it means to face this world bravely and with dignity.

As a community we probably don’t talk enough about the toll that FASD can take on family relationships and on marriages in particular.  I am writing from the perspective of adoptive parents, but every single family relationship can be stretched – especially if FASD is not understood, if the strategies are not taken on board.

It isn’t easy, but we are better people together and individually because of this path we are walking.  Our marriage is stronger for this journey.  We make accommodations every day, not just for our son with FASD, but for each member of the family.  In learning that patience and compassion, hopefully we are growing into the kind of adults we always wished there might be in this world.

Happy birthday to my better half.  Maybe I didn’t get you a card, but here is a blog post instead.

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Great Expectations – A Sensory Birthday Extravaganza

We love a birthday boy with #FASDBy @FASD_Mum

It started about 3.00 pm on Christmas Day: “For my birthday, I want….”  Week by week, month by month, the birthday list kept growing a little longer and the anticipation grew more fevered.

Impulsivity is a part of his FASD.  Every time our son sees something cool, he wants it.  Very much.  He has learned over time that he can’t always have it at that moment.  This is progress.  And we learned long ago that Toys R Us is no place for this child (or possibly any child).  That too is progress (learned the hard way).  He isn’t very good at consistently remembering things, so that thing he HAD to have one day can be forgotten and it is standard practice for something to be added at the very last minute. This shifting and expanding present list is a harrowing minefield for us, as his disappointment can be of epic proportions if he is expecting something that he does not get.  You may say, “All kids are like that.”  But I am here to tell you for a child with the brain injury of Fetal Alcohol Syndrome, this is a deeper, more devastating kind of soul-destroying let-down that is hard to describe.

This year he approached his birthday with mixed feelings.  He wanted the presents (by the time he was done, the list would have bankrupted Branson), but he doesn’t want to grow older.  He knows what physical changes are on the other side of puberty and he really isn’t pleased.  “I don’t want to be 12.  I just want to be 10.”  Waxing philosophical about “time and tide” doesn’t help much for a child who still skips along in that wonderful place we all once knew where magic and make believe seep and flow into reality.

I used to think summer birthdays would be cool (I am a December baby and forever bitter at the liberties people used to take, like the friend who once gave me a pair of mittens and said left one was for my birthday and the right was for Christmas.)  But for our son, having his birthday during the same week that school closes is like some form of psychological torture.  He can barely cope with the end-of-the-school-year pressures and the coming holiday.  When you add on top of that all of the hopes, dreams, expectations of his birthday, it’s enough to make anyone’s head explode.  Yes, we have had a rough ride of it around here for the past few weeks.

We also then had to decide logistics.  Should we plan a big party and invite all those kids in his class who did not invite him to their parties all year long?  We thought we would avoid that, and several months ago we made a deal that he and one of his close friends could go to the Summertime Ball, and that would take the place of a pool party like we had last year.  Except, that concert was in early June, and our guy has trouble linking something that took place so long ago with the here and now.  So of course we had to celebrate on The Day.  We had to plan things at the same time that stress levels were heightened in our house.

The night before his birthday tested our marriage in ways big and small.  Cleverly, we had decided to wait until he was asleep (which didn’t happen until after 9pm) to start to wrap things and to set up those electronics that needed special attention.  Some of you may remember that he broke his phone months ago, on the “Worst Day Ever.”  We had insurance on the phone, and it was replaced quickly though we never told him.  We decided to wait until his birthday to give it to him, thinking that handling the social pressures of a phone during the school year was not helping him.  In retrospect, it was not our best move ever to not even try to turn on the phone when we got it months ago, as we discovered at 11.00 pm that they had given us the wrong one and the phone was locked.  Oops.  That one went back on the shelf.

You also may have noticed that he broke his tablet last week, when in frustration he banged it on the floor because the volume would not go loud enough.  Normally we would not have replaced this so quickly, but we are heading on family holiday soon, and it is for our own survival.  But our attempts to set it up on the night before led to near toxic levels of parental frustration.  We didn’t get to sleep until very late.  The pressures of hoping he would enjoy the day were great.  We face each Christmas and birthday with a certain level of dread, as we know we can never match the vision he builds up in his head.

He was happy enough on the morning.  He woke up at 6 am and managed to wait til 6.30 for his dad to wake up (we didn’t even dream of waking his teenage older brother this early).  The birthday boy luckily forgot (for now) the very many things he said he wanted.  He had not yet realized that we failed to install the web browser on the tablet, and did not yet realize that it could not play music.  It only took him an hour to ask, “Mummy, why did I get a phone case when I don’t have a telephone?”  Oops.  Guess who forgot that was in the stack of presents?  We explained in vague terms we would see about getting a phone and that if we did he would be prepared.

He went to school happily enough, having convinced himself that one of his friends was going to give him a pair of Heelys.  He managed to come home from school in a decent mood (despite the absence of Heelys).  We had a few hours to prepare for the guests coming.  He was beside himself.  In retrospect, he should have been out of the house during the preparations.

Our sensory-seeking guy has been addicted to the “challenges” on the Seven Super Girls You Tube channel.  Over recent weeks and months it has not been uncommon to find cracked eggs in the bathtub, odd mixtures of baking soda and flour in our coolers, and evidence of other disturbing “pranks” with food hidden here and there throughout the house and garden.

So we decided to do something we KNEW he would enjoy.  With his input, we drew on an idea we had heard from a US relative about a “No-Manners Birthday Party.”  We invited family members and just one of his younger friends who is always up for some fun.

I can honestly say this was the most fun we as a family have had in ages.

Here is what we did:

12th Birthday Challenges

Rules:  There are no manners allowed. Hands-free eating is encouraged.  Personalised spit cups will be provided.  Lots of paper towels will be on hand.  All guests will be hosed off at the end of the festivities.

  1. Eat it or wear it – Everyone picks a number – you either eat 1 tablespoon of that food or wear it. If you eat it, the person on your left wears it. (Foods included a mixture of savory and sweet: spam, jelly, hot chocolate mix, mayonnaise, liver, ham, ketchup, baby food, pea & ham soup, etc.)
  1. Whipped cream contest – We put a few sweets on paper plates and covered it with whipped cream. Without hands, who can find the most candy at the bottom?
  1. Cheerio challenge – who can get the most cheerios stuck to their face? We all picked numbers and had various sticky substances like honey, maple syrup, raspberry coulis, etc. [Hint – you might want to skip raita – I can say from personal experience raita up the nose is not a good thing]
  1. Egg challenge – Everyone picks an egg without touching them. On the count of 5, crack it on your head to see if it is hard-boiled or not.
  1. Flicking corn plastic spoon challenge – who can make them go furthest? (my niece suggested beans, that might have been better as the corn flew way too far/fast and being frozen it was potentially deadly…)
  2. No label tin can challenge – Everyone picks a number and eat 1 tablespoon of what is inside the can with that same number. [We had a mix – canned mac and cheese, gooseberries, prunes, coconut milk, chicken soup, etc. It’s best to avoid the haggis if you can, our niece learned the hard way!]

[We missed the blow milk bubbles contest as we had no straws, and the “shake the can, watch it explode, and then drink it” soda burping contest was postponed since even the kids were grossed out and needed hosing down…We avoided anything with mustard, as that stings the eyes.]

I wish you could have seen over the course of the party how much joy we all had.  Nearly all the adults participated, along with the kids (even The Auntie who was initially leery of losing control over what would might be poured upon her).  As we left our inhibitions behind, we allowed ourselves to give over to a different sensory experience – the sticky, gooey, yucky, smelly, sweet delight of a kid’s world.  We planted our faces in whipped cream, we made sure to rub the jelly into each other’s hair, we forced ourselves to see and smell and touch and taste food in various forms.  It was silly and manic and just plain fun.

We had discussed our plans for this party the day before with a specialist therapist who has been working with our family.  He smiled a huge smile when we told him about this.  He knows how many struggles we have been having lately.  He said it was great that we are “sanctioning” messy play like this, validating our son’s interests, but with boundaries.  He suggested we plan on summer days a time each day or each week when messy play is allowed, with the clear proviso that when it’s done, it’s done.

So he had more “challenges” than even our son could have imagined.  He laughed and was allowed to be the silly, sweet and impish child that he still is, even at 12 (the emotional age of many kids with FASD is often half their chronological age).  Afterwards, we sang a joyful happy birthday and he blew out candles on the strawberry-filled sponge cake his grandmother had made.  This was a no-frills party, with paper plates and plastic spoons (the better for flinging corn).  Everyone had worn old clothes.  For food, we popped some store-bought pizzas in the oven for dinner.  We would not win any party-planners-of-the-year awards for this party, but who cares?

Our son declared this the “Best Birthday Ever!”*  His young friend said it was the “freakiest, weirdest but most fun party” she has ever been to.  You could see the years melt away from the adult’s faces as the events unfolded.

We had entered our son’s world, and finally understood that it is pretty darn fun to feed your senses in the silly and “uncontrolled” ways he has been doing lately.  It was remarkably fun to smoosh my face into a plate full of whipped cream.  I couldn’t catch any of the candy below because I was laughing too hard.  As we all let go that little bit, we all understand him a little better.  We discovered his world has some hidden joys in it that we have long since forgotten about as we have grown older and too serious.

We shared this party game list with other friends via social media.  The feedback has been great – others are planning to do this with their neurotypical kids too.

We are not out of the woods yet, there is a long summer ahead of us.  As I have been typing this, our guy has hinted more than a few times that he wants to try out that cola gelli-baf that he got for his birthday.  I suspect he may be up there at this moment, filling the bath…

And there it is, I just heard from the bath the first “For Christmas, in December, I want…”

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[*Note: they are all always “the best birthday ever” but this one was especially good.]