FASD Parents Have to Suit Up

Suit up.jpgBy @FASD_Mum

I sat by the poolside, torn between admiration and brewing frustration.  We are on holiday and our son finally has the chance to swim to his heart’s content.  It is so deeply satisfying to see his sensory needs finally met.  It turns out all it takes is a large indoor pool, a Jacuzzi, a steam room, and a sauna.  I have spent more time than you might imagine, watching him smiling in that Jacuzzi wondering if we could rig up something like that in our bathtub.  I was thinking of my younger days as a “Jersey Girl” – where summers meant deciding what beach to go to or whose pool you would swim in that day.  I felt a little sad that our guy doesn’t get this full experience in community pools in “The Shire”.

Of course, the magic of it all started to wear off sometime around 5.45 pm.  That was (my admittedly random) designated time for him to get out of the pool.  We had gone back to the pool in the late afternoon.  I had already spent hours in the morning/early afternoon being steamed, bubbled, floated and baked (I loved it all).  But for this second trip back to the pool, I decided not to bring my suit.

Big mistake.

At 5:45 pm, my cherub made clear from the middle of the pool, with many witnesses, that this was way too soon to get out.  He was in fact not yet tired and was having a blast.  I specifically chose not to draw battle lines.  By 6:30 pm I was remembering a time from my childhood when my brother put an eel in the pool – that little thing was super quick to dart to opposite sides of the pool each time he tried to get close to it.  The parallels were remarkable.  My husband had come to the pool at one point, also in street clothes, perplexed at what was taking so long (since we were missing out on dinner).  I sent him back with the instructions if we did not return by 7.15 he should come with his swimsuit.  Above all, I did not want to have a battle in the pool.  We are here for a week.  I want this space to be happy.  It was after all my own mistake for not having my suit.  I wanted this to be a great day for our son.  He had to eventually grow tired, right?  (Wrong.)  I was bored, my phone had run out of charge, and my “I’m cool” façade was cracking.  But I was not going to let this end badly.

The thing was, this was one of those times when people were thinking “what a poorly behaved kid” – and those moments put my back up in a way few things do.  I was trying to be subtle, trying to keep my voice down, but really there is only so much you can hide about the scene when your little dolphin boy heads to the bottom of the pool every time you try to talk to him.  One woman even tried to talk to him to get him to come out (my husband quietly thanked her and explained he has a disability so this was not just the pure disobedience that it seemed to be on surface).

And actually, our son was spectacular.  He was in his element.  He was having a great time.  After he nearly knocked into another kid, that little boy came up to me.  I thought he was going to be cross.  Instead he whispered, “How did he learn to be such a good swimmer?”  By which, I realized he meant, “How did he learn to do those tricks without killing himself?”  So I told him he takes gymnastics, and he is fearless.  The little boy’s eyes were shining, “That’s me as well! I take gymnastics.”  Turns out our son was a bit of a hero in his kid’s eyes for all his one-armed cartwheel dives and flips into the deep end.  Our very literal son had already decided the “no diving” sign did not apply to these moves since he was going in feet first.  I could not find fault with his logic.  And I was also kind of in awe – I had no idea he could do half of those things, though I did draw a line at aerial cartwheels, since even he admitted he has only ever done those on the mats.

Perhaps even six months ago I would have dug in and got my son out of the pool at the agreed time.  I am sure many of you reading this will think I was wrong to let it slide so long.  A few months ago, I might not have realized the beauty of his thinking when I pointed out to him at 7:02 that we had agreed he would get out of the pool at 7:00.  He got a huge smile on his face and said “But it’s not 7:00, that time has passed!” before he swam off and under the surface in triumph. Genius, really, when you think about it.

We are on holiday.  The time that I chose for leaving the pool was arbitrary.  The point of the holiday is to have fun.  He was having fun.  What good would it have done if I dragged him out by one arm or if I had gone in with my dress to haul him out?  The standoff would have a natural conclusion at 8:00 when the pool closed anyway.  How lucky we were that the young woman who worked there agreed to say nicely to him that if he wanted a shower he needed to get out a few minutes before 8:00.  How lucky was I that my sister (on holiday with us) had sent along a pair of new flip-flops “from the piskies” (Cornish fairies) and that my husband was quick thinking saying he could only have the present once he was dressed?

So rather than what might have been a screaming, dripping, kicking battle, at a few minutes past 8:00 he came running out waving his note from the piskies.  Happy.  Joyful.  Tired.  Exhilarated.  I know we can’t always give him such leeway, but tonight it was possible.  Tonight, we put his needs first and we were rewarded with a content and satisfied child.

The day before?  That was another story.  That day did not end well.  That day – perhaps due to tiredness, lack of food, lack of sleep, or all of the above – our son had a meltdown in the garden of the rental house.  He tossed broken toys into the bushes (it’s not clear if the meltdown started because one of these was already broken and not working).  He threw a rock hard at my husband and hit him in the side of his face.  Our relatives who have not yet seen such a meltdown were freaked, but I could not stop to worry about their reaction in the midst of trying to find where our son had gone (not far, as it turns out).  It was a horrible scene.  The gap between what we knew we needed to do and our relatives’ instinctive reaction was huge.  I knew we needed to be quiet and reassuring so we could avoid any further escalation in this strange place with lots of winding paths that our son could easily get lost in.  They thought I was uncaring of my injured husband, when that was far, far from the truth.  They were stunned, scared, and confused to see just how far from “traditional parenting” we have gone.  I realize in retrospect that even for the most informed and caring extended family members, if people are not involved daily in our lives, the struggles can seem alienating, and the worst possible time to try to explain it is in the middle of a crisis when our son’s needs due to his disability must come first, even if we have to mop up hurt feelings for days after.

I found our son just outside the gate, looking at blackberries.  He was uncertain, standing near but fearing our reaction.  He was struggling to gain self-control.  I could see his shoulders were not yet relaxed – we were on razor’s edge.  This could either dissipate or escalate.  I didn’t say anything, just walked him down a wooded path.  He reluctantly let me hold his hand.  I surprised him by showing him flowers that matched my dress (the first thing that came to my mind).  Random enough to shake him back into the moment.  Fragile still, we walked straight home and directly into the bedroom where he finally went to bed.  Apologies to his dad waited for nearly 24 hours.  And that was ok.  My son and I talked it over in the restaurant at lunchtime.  I told him we understand it was hard, with so much that is new (we had only recently moved from the house we stayed for the first week of our holiday to this new place with so much to absorb).  He had assured me, “I am not going to have a meltdown at you Mummy”.  I so much wanted him to be able to keep that promise.  That is why I sat by that pool for an extra two hours.

The holiday has been not easy, but not impossible.  The first day it nearly ended before it really began.  Our drive that was supposed to take four hours took nine (in part due to traffic, in part due to the fact we simply could not travel with our son as dysregulated as he was).  That day was perhaps the worst we have ever had – a full blown public meltdown in a roadside café with picnic tables surrounded by tiny stones that were oh-so-easy to scoop up and throw.  We were all a little stunned and sad.  I was wondering if I would need to take him home on a train.  But we picked ourselves up and continued.  As usual, the benefits outweigh the hard parts.  We suppress our sadness that he finds it all so difficult, because we see he also feels great joy in these new experiences.  Watching him conjuring the waves is the stuff of lifelong memories.  He runs into the water up to his waist, stands defiant in the face of the sea, and like a conductor motions for the waves to rise and fall, giggling when the waves inevitably win as he cartwheels away from them.

Suddenly the summer seems too short. These opportunities seem too few and far between.  It has been so nice to see our son (relatively) unstressed now that he is not gearing himself up for school every day.  I dread having to shop for school uniforms in two short weeks.  I don’t want to see the tension creep back into his now suntanned little body.

So, seriously, if he wants to swim a while longer, why not?  OK, sure, next time, I will be ready.  Parenting a child with FASD demands we suit up and remain prepared for all sorts of unanticipated situations – including those moments of joy that present themselves if only we are flexible enough to allow them to unfold and proactive enough to tuck away their sweet memories for those hard days that also will come.  Carefully, slowly, we sweep away the negatives – not through denial but through choice – and prepare the foundation of positives upon which he can build his life.

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