It’s Always Better Outside – Even on the Hardest of Days

It's 6.30, you just want to sleep, instead you are faced with a brewing #FASD meltdown.-3

 

By @FASD_Mum (with a postscript by The Auntie)

It must be morning even though it’s dark as night. I sense motion.  My brain says it’s time to be alert.  My body wants to burrow deeper into the blankets. I try to ignore what I know I must do, my mind scanning hard to piece together that dream, to slip back into sleep.

I know I will soon pay dearly for every moment I steal for myself now.  Our son has Fetal Alcohol Syndrome and leaving him to his own devices is usually not a great way to start the day.  My mind is already calculating tradeoffs, desperate for just a few more moments of comfort.  Are there any sweets accessible in the kitchen? Does he have his phone?  Does it sound like he’s listening to music or is it a silly YouTube video that will wind him up?  Is he teasing the dog?  Is he being quiet or will he wake up the others?  It’s almost too tempting.

But, I decide it’s time to face this day.  Head pounding already, the moment my feet hit the floor I have a premonition that things will not go well this morning.  Maybe because I know myself well enough to know I am not on my game.  Maybe it’s because last night’s meltdown still stifles my mood.  Maybe its because I hear that silly laughter-beyond-joy that usually signals our son is already sliding into a place ridden with booby traps for a tired parent.  It’s only 6.30 am.

I mentally calculate the lay of the land.  He is in the dark, in the hallway, on the floor.  This is his way of being considerate.  He has been awake for a while and did not want to wake me up.  I remind myself this is kind of him and vow to say that directly.  I forget to do that.  He heads into the living room while I go into the kitchen to turn on the kettle.  I am in need of caffeine.  I gamble that I have a few minutes before he will start to mess with the dog.  I missed the fact that he had a Penguin bar in his hand as he passed me in the hallway.  I was soon to learn this was not his first sweet thing for the morning, there was a cache of candy hidden in his room, provided by a school friend.  Sugar on an empty stomach, mainlining into his bloodstream…of course in retrospect it’s easy to see where this would end up.

I give him his little blue pill, wondering for the thousandth time if this is part of our problem these days.  His aggression has increased dramatically since he switched medications (a move we ironically initiated because he was growing impatient on his last meds).  The new medication also coincides with the start of mainstream secondary school, so it’s a toss up as to what is the cause of this changed landscape.  We have mixed feelings about seeking medical advice.  There is tension between my husband and I as to the best way forward with regard to the medications.  Truth is, neither of us knows what is right.  Do we take him off all of it and go from there? Do we try to up this medication to a higher dose?  We don’t have any experience to draw upon.  Of course, the option we don’t often discuss is that our son may simply be moving into a new phase of his condition, and as he ages this aggression may be part of our emerging teen’s hormonal experience.

Our son says he’s still hungry.  I know he excitedly ate some chicken deli meat last night, so I make another trade-off in my head and ask if he would like some for breakfast.  Processed meat might not be the breakfast of champions, but it has to be better than the sugary things he wants.  He eats five pieces, laden with who knows what chemicals that will do who knows what to his already deepening systemic disequilibrium.  But I feel a sense of relief.  At least now I know he has had something with some semblance of protein in it.  But then he moves on to the sugar donuts.  He is back in 30 seconds having thrown out the donut, distressed his hands are sticky.  What was supposed to be a reward leaves him ramped up several notches on the this-morning-is-going-to-suck scale.

I still haven’t made my tea, my head is still pounding, and I am starting to feel sorry for myself.  This is a fatal mistake.  I say something in a curt tone that puts him on the defensive, and there we go.  Now I am no longer his lovely “Mummy” but now a “bitch” (I will spare us the related adjectives).  I feel the weight of the morning dragging me down when I should be buoying myself up for what I know is coming.  I lose patience, partly because I am focusing on keeping the dog safe.

I mentally calculate the trade offs between dragging my husband out of bed sooner rather than later, knowing he needs the sleep and knowing it may take him too long to come up to speed.  We are, after all, already in the fast lane.

Something snaps somewhere.  Whatever fragile line my son was walking has split and we are now deeply in it.  I am being called every name in the book.  The dog has been kicked and hit.  My husband is up, trying but bleary eyed, and I feel bad yet again that he has had less time than I did to gear up.  We know we need to get our son to a quiet place.  But that comes out as punishment rather than incentive and there is a royal battle unfolding.

Our son is now in his room, in full meltdown.  I mentally calculate how loud it must get before it wakens our teenage son whose Chronic Fatigue Syndrome means it would probably have to be somewhere much higher on the Richter scale.  For that, at least, I am thankful.

By the time I get up there, it’s too late.  Our son comes out of his room, not looking at me.  He’s halfway past me when I hear him say, “I peed in my room.” I freeze.  Scared.  My reaction was fear.  This is now the second time in recent weeks he has done something like this.  It’s new behavior and it feels huge. No parenting book I have ever read has told me me what I should do now.

I say what I shouldn’t say, “Why did you do that?”  And I say what might not be so bad, “Will you help me clean it up?” But husband is here now, freaked more than me, visibly shaken, and this is in danger of further spiraling if that is possible.  I send my husband off to find carpet cleaner to give him time to gather himself while I blurt out the only thing that comes to mind.  I ask my son, “Would you like to go for a scooter ride?”

He freezes, mid-swear, upside down on his bed.  “What?”

“Would you like to go for a scooter ride?”

Disbelief and then a glimmer of hope hits his eyes.  Pause, while he assesses my meaning.  “Yes!”

“Can you get dressed while I clean this up?”

“What?”

“Here, put on these clothes.”  When he continues messing around, I ask,  “Do you want to go on the scooter?”

Pause.  “Yes.”

“Then you have to get dressed.”  Expletive.

I don’t get sidetracked.  I don’t let it go.  “Do you want to go on the scooter?”

“Yes.”

“Then you have to get dressed, and I have to clean this up first.”

“I peed in my room.”

“I know.  We have to clean it up before you can go on the scooter.  Can you sit quietly for a moment?”

“OK.”

And he did.  I did.  And out we went.

He has a new Christmas scooter.  It sparks.  He was wearing his Egyptian Pharaoh headdress and he was free for some time just to “be.”  Just to be the free-flying, made-for-speed kid who loves the feeling of things moving around his face and ears.  I sometimes still see in his eyes the toddler who was never outside for the first 16 months of his life.  I will never forget how laughed with glee when he first felt the breeze kiss his face.  In a way, he hasn’t stopped reaching for it since.  I doubt he ever will.

So there we were, outside, early on a Sunday morning.  The dog got much needed exercise.  My husband usually does these weekend walks as I have some medical issues.  But getting out helped me forget my own aches and pains this morning.  I had time to begin to clear my head.  We chatted a bit about what had happened, but it was clear to me he wasn’t ready yet.  I just ensured he saw me smiling at him. Laughing as he splashed through puddles.  Congratulating him on the way he made the scooter jump over the curbs and speed bumps.  I wanted him to see my love.

I made some resolutions.  I remembered when I was single I used to wake up early and go for long walks.  I have decided it might be worth trying to do this with him, maybe even without the dog.  Just head outside for a quick walk as soon as we wake up.  Before the walls start closing in on us.  I will talk with the doc tomorrow to at least let her know our concerns about the medications.  I will try to wake up faster tomorrow.  I will do a more thorough sugar sweep and talk to the school to see if they can keep an eye out for illicit candy deals.  I will check our son’s pockets to make sure he is not taking spare change to swap for candy.  I will be more conscious of the link between various foods and these incidents.  I also resolved I would write about this morning honestly.  It’s hard to speak about mornings such as these.  Some things come too close to the comfort zone for even closest family and friends.  But we decided to be more open about our family’s struggles in hopes that it can help others understand our son and this disability. And this post, this morning is a part of our reality. I know our son feels it deeply though he cannot make sense of it.  Someday he may read this.  I hope when and if he does he understands we have shared this story with compassion.  We know this morning disturbed him greatly too.  I cannot wait until he can us how things feel from his perspective.  In the meantime, we reach out to adults with FASD to learn from them as much as we can.

Returning home, I knew it we needed to break the dynamic.  Though the house was a mess and we were unshowered and far from our finest, I swallowed my pride and invited a friend and her younger daughter over for pancakes.  It helps our son immensely to play with kids closer to his own emotional age.  Then our son had gymnastics.  After gymnastics we dropped him at his auntie’s allotment, where we left him digging and looking for worms among people who knew what kind of a day it had been and who would feed his proprioceptive senses with things to push, pull and dump.

My husband and I are tiptoeing around the house, fearful we are facing a repeat of this morning.  We know there is a fine balance between keeping him physically engaged and overdoing it.  We will soon find out which of those options we will be dealing with for the late afternoon and into the evening.

So what’s the moral of this story?  It’s always better outside.  I was intrigued when a South African physiologist, upon learning of our son’s Fetal Alcohol Syndrome, said without skipping a beat, “Oxygen.”  She maintained that the most important thing to help his brain is oxygen and the only way to get it to the brain is through exercise.  It’s interesting and humbling to think one of the easiest things we can possibly do for him is right there, everywhere, free and available if only we get outside and remember to breathe.

——

Allotment Auntie Replies:

We provide the oxygen.

Having (finally) taken on board that FASD Mum and FASD Dad need regular respite, last week-end was bread and butter pudding making time and, knowing that I was going to spend a bit of time on my allotment while the sun was out, I asked if SuperT wanted to come for an hour or two today.

I’ve got lots of oxygen on the allotment plot.

There were also piles of compost to be moved. Worms to be found. Holes to be dug. Garlic to be planted. And a brushing dance song to be invented.

I was there with a friend, helping her on her plot. SuperT followed instructions. Was polite. Said thank-you for his hot chocolate (made with water). Was patient while we chatted at length with another allotmenteer.

Whatever his behaviour at home, when he is with other people his behaviour is great. If I had a pound for the number of times that I have heard in my professional work parents exclaim, when hearing that their child was perfectly behaved at school/club/extra-curricular activity, “Really??? REALLY??? Coz she’s a little stinker at home”, then I would have a nice little nest egg!

I know that those two hours today may well be a tiny oasis in the middle of a desert storm, but I wanted to reassure Mum and Dad that they are raising a little lad I am happy to spend time with. You must be getting something right.

And guess what? It’s not just SuperT that needs the oxygen. Mum, Dad and Big Brov do too. Even if it’s just for two hours. And remember, they won’t always ask to be given breathing space.

We can provide the oxygen. Pick up the phone.

—–

For more information, here is an interesting related article that was passed on to us by @FASDNETUK:
The Most Natural Treatment of All: Green Spaces and ADHD, (November 2012).  The article focuses on ADHD, but it seems like similar studies could be done about FASD (plus many kids have overlapping conditions – our son also has an ADHD diagnosis)

 

 

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3 thoughts on “It’s Always Better Outside – Even on the Hardest of Days

  1. Thank you for honestly sharing the awful times that care givers for kids with FASD face. It is a daily struggle and can be so wasy to feel alone.

    Like

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