Extended Family, FASD, & Halloween Happiness

extended-family-can-make-halloween-fun-for-a-kid-with-fasd

By The Auntie

I currently have two pumpkins sitting in my kitchen, one of which I will help my nephew carve when I have him over night on Wednesday for another of our sleepovers. I have never carved a pumpkin with him, don’t know if he will enjoy it, but this we will discover.

For the last couple of years, I have found myself at home for Halloween and I LOVE Halloween. I have fond memories of eating silly, “disgusting” food, dressing up and apple bobbing as a kid.

Nowadays, it’s all about the trick or treating and no-one seems to do the traditional games any more, so I decided that I was going to introduce the kids in my family to a couple of them.

And yes, I dressed up. I like dressing up. The first year I was the only adult that dressed up. Last year there were more.

So here’s the recipe …….

  • Make a finger food buffet and give it Halloween style names.
  • Make your own costume – a sheet for a ghost; a ripped T-shirt and some face paint makes a zombie; black clothes and green face paint transforms you into Elphaba – use your imagination and it doesn’t have to cost a fortune.
  • Buy some apples.
  • Buy some doughnuts and string.
  • Put the apples in a washing up bowl full of water and bob – I can promise you that the adults WILL get competitive!
  • Eat the finger food – this has to be done before the doughnuts – use the doughnuts to bribe little people into eating some proper horror food.
  • Tie the doughnuts on the string. The contestants lie on the floor and have to eat the doughnut from the end of the string which is held sympathetically by another contestant.

At some point in the evening they will want to fit in trick or treating, you fit it in where appropriate.

“So,” I hear you say, “That all sounds like fun stuff to do – why is The Auntie making a point of it?”

Festivities are always a trial for families of kids with special needs. In the frazzled environs of day to day life, planning anything more than managing to get out for some trick or treating is near impossible and our kids with FASD can feel let down, left out, or overwhelmed.

By giving up a few hours time prepping some food and organising a couple of silly games, you can give your families affected by FASD an evening of smiles, silliness, rest and respite.

Even if you don’t want to do the food bit (you could always ask whoever is coming to bring a contribution and have a pot luck dinner) you can still give your families a moment away from the everyday trauma. The new school year adjustments are ramping up. You can give them a tiny oasis away from that.

Yes, it might only be a couple of hours. But, for our families, those occasional moments may be enough to knock a couple of straws of the camel’s back.

Happy Halloween!


P.S. from FASD_Mum:  What The Auntie may not know is how many challenges her Halloween parties have solved for our son with FASD.  His sensory issues make walking around during cold nights wearing costumes and masks a real nightmare for him.  He gets freaked by some (most) of the Halloween decorations, especially at houses where there are decorations with loud noises and surprises.  He is intimidated to walk up to people’s doors, takes too long to choose which candy he wants … it becomes very overwhelming, very fast.  He is starting to feel a bit out of place, at the age of 12, when so many of the kids are much younger, but emotionally he is still at the age where he wants to participate.  Too much trick or treating yields too much sugar, which has its own host of problems (if there is candy in the house, it will be eaten until it is no longer there – our guy is not one to pace himself and it is impossible to hide it away, candy-related meltdowns are guaranteed at this time of year).  In many ways he is just as happy staying inside and giving out the treats as he is knocking on doors.

The Auntie’s family-focused and extremely fun but low-key parties have been perfect for our son.  They are a sensory treat for him (bobbing for apples!).  Most of the activity is at her home, with a few visits to trick or treat at the homes of neighbours who know the family well.  And the real joy is that in her enthusiasm to do something she loves, she hasn’t even realized just how perfect these parties have been for our son with FASD. 

Spending time with a child with FASD can be great fun, and it’s all the more exciting when another extended family member includes them in something that they really enjoy.  Sometimes only a few modifications are needed, and the kids build such positive memories and family relations are strengthened.  Maybe this particular kind of party would not work for all kids, but I would bet there is some way to plan just an hour or two this Halloween that would really make a child light up with joy and give the whole family something to feel good about.

And then, of course, if Halloween is too soon, there is also Bonfire Night…

Further reading:

Halloween Ideas for Kids with FASD

Acceptance for this All Hallow’s Eve

 

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Extended Family – Please Support, Don’t Judge FASD Parenting

extended-family-of-those-with-fasd-2By The Auntie

Never judge an FASD parent until you have walked a mile in whichever shoes they have managed to get on their feet today.

“All that kid needs is a bit of discipline”

“Why is that woman on the beach just popping seaweed instead of stopping her son swearing at the top of his voice?”

“Have you tried controlled crying, the naughty step and Super Nanny techniques – if you persevere, those methods will work”

“Well it was your choice to adopt. You knew what you were getting into”

I bet you have heard something like this said about the FASD parents in your family. You may have thought similar yourself (go on, admit it, you have. I will admit it, I thought it). I went along to the latest FASD Support group that my brother and sister-in-law run and I listened to reports of the above attitudes.

And I listened to how some of them have been abandoned by, estranged from or criticised by their nearest and dearest. Large, seemingly irreparable, rifts often appear in previously close families directly as a result of the adoption of an FASD child. Extended families often observe FASD parenting skills and can’t understand why their son/daughter/sister/brother “lets the kid get away with, what is basically, just naughty behaviour”

So let me ask you something.

Don’t you think that if normal parenting skills worked, they would use them?

Because the simple fact is that normal parenting skills simply do not work with an FASD child.

They just don’t.

And no, actually, most of the time these parents didn’t know what they were getting into because, in the UK, we are playing catch up. I have the opportunity in my work to come into contact with many many SEN and PSHE teachers and over 90% of them have never even heard of FASD.

I would bet that your FASD parents spend every waking (and some sleeping) hour researching skills, techniques and coping methods that will work for their child – every FASD child is different and there is just no way of knowing which bit of their brain was damaged at which point, or points, of the pregnancy, or what is going to work for their child on that day.

So I would like to make a plea to all those family members who have thrown their hands in the air in frustration and walked away in the past. It is never too late to say ……

“OK, I think you are doing it wrong, but am prepared to let you try to prove why you are doing it right. Or at least prove why normal parenting won’t work”

Please.

FASD parents parent differently. Not because they want to. Because they have to.

———
More from The Auntie is available here.

Extended Family Can Do Tiny Things To Help FASD Families Struggling This Holiday

AuntieTinyThingsBy The Auntie

I’m learning (slowly).

You may have noticed a recent increase in tension and a feeling of impending doom in your FASD mums and dads. If you haven’t, then they are hiding it very well and not letting on (they do that!) If they tell you that everything is absolutely fine and they are looking forward to the near future, they are lying.

Why? What’s the matter?

One word.

Holidays.

They’ve arrived and mums and dads have six long weeks stretched out in front of them with nothing to occupy the little ones and still having to hold down jobs. These kids manage (or not) to hold themselves together whilst at school, but when the holidays descend there is an additional 7 hrs each day that already frazzled parents have to get through.

I have said before that just popping in for coffee can change the atmosphere in a house and can head off an impending meltdown. I’m here to remind you today that you can very much support your FASD family by doing a tiny thing.

Today I took advantage of free child labour and took SuperT to my allotment where he helped me dig potatoes, harvest radishes and beetroot and pick runner beans.

And I’m learning.

I know now that before he can dig potatoes, he has to tie today’s hairpiece just so, or it will get into his eyes.

I know that he is really, really trying to dig the potatoes properly and is not deliberately chopping bits off with the trowel.

I know that the big fork is too big for him to use properly, but using it to check that patch of ground for any potatoes that I missed (without doing any damage) makes him feel like a grown-up, big boy.

I know that I have told him a million times that those particular blackberries belong to someone else, but they are too delicious to resist, so I take him to my friend’s allotment who has a blackberry that I know she won’t mind me raiding, just once.

I know that the watering can is filled so that I can water the lettuce and radish, but actually it’s more fun to water SuperT’s hands.

* * * * *

I love the way that he shouts “POTATO” every time I uncover one, collects it from the ground and (after I told him that throwing them might bruise them) places them very carefully in the bag.

I love the grin on his face when he sees I’ve written “SuperT’s Potato” on a label for the little potato plant he’s put in the ground (I’ve no idea whether it will grow or not, but that’s not the point)

I love the way that he measured the runner beans I have picked against the ones still on the plant to see if it is long enough to pick.

I love the joy in his eyes when he realized that, as we were leaving, I had stopped the car in the track outside the allotments to let him jump out and pick wild blackberries (well they probably belong to someone inside, but outside, I think they are fair game).

I love the fact that I “have the best allotment ever!” And he was, literally, full of beans!

And when I delivered him home, dad was having a much needed doze, mum had been able to get some work done and he was in a much better mood – possibly even avoided a meltdown.

None of which I knew when I collected him. I had just listened when mum and dad had made impending doom noises about the holidays and knew that something little from time to time can make a difference. I was just after some free child labour, but what might have happened is that a possibly dreadful day melted away, rather than melted down.

You CAN do it.

__________________

A comment from @FASD_MUM:  This post really makes us smile. The day was going nowhere good, fast. The knock on the door was so welcome, and our son so excited to have his time with his auntie. He came home relaxed and proud to show us the runner beans, beetroot and potatoes. It was like night and day, the 90 minutes reprieve helped relax the whole house. The Auntie’s example is a quick trip to her allotment, but it could just as easily have been a walk in the woods, a romp at the playground, tossing a ball back and forth, splashing in puddles, a hot chocolate in a coffee shop. It doesn’t really matter whatever ‘it’ is. Our guy still craves one-on-one attention. And it is lovely to watch their relationship grow a little deeper every time they have these adventures. On behalf of FASD parents everywhere, I urge you to pick up the phone and ask if that little one might like to go for a ______. (You can fill in the blank.)

Extended family members can support the support

FASD parents_carers can support each other, but you can support the support..jpg

Guest Blog by The Auntie

On Saturday morning I spent nearly three hours at an FASD support group with my brother, in the company of a couple of birth mothers, some adopters, some fosterers (sic?) and a partner, swapping stories, discussing Social Services options and the school system.

Having read a lot of the information that my sister-in-law has shared on various media platforms, I thought I was quite up to date with what information was out there. But whilst listening to these primaries carers, I began to realize that I know nothing!

Those parents/carers that are on the coal face know instinctively that there are no rules. Each of their children is different. And will behave differently on different days – what works one day, won’t work the next. One day they think they have spotted a trigger and then next day, it doesn’t trigger. Similar behaviours were discussed and random differences. There was empathy, sympathy and laughter.

I asked some questions and tried to wrap my head around the answers. Even more than conversations with my brother and sister-in-law, this group made me realize that there is no formula for success with FASD children, but each parent and carer muddles along as best they can.

One comment that nearly broke my heart was when a couple said that they had stopped asking close family and friends for help. Their family and friends just didn’t get it. This wasn’t said to gain sympathy. It was just said. These families spend all their time fighting the system, educating the system and trying to get the system to work for them. At this support group we were able to exchange ideas, good contacts and ways to access formal support.

But what I found most useful was that not one person there seemed to look at me and think “she’s not a parent, she’s not going to get it”. They were open and frank and willing to help me understand. I know I’ve said it before, but it’s a massive thing for FASD families to ask for help and if they’ve stopped asking, you are going to have to be the ones to open that dialogue.

If you have the opportunity to join your family at one of these support groups, I can promise it will go a long way to help you get it. Or even go looking for one for them to attend, if they don’t already.

FASD parents/carers can support each other, but you can support the support.

—-

See also:

INVOLVEMENT (An open letter to the extended families of a child with FASD), by The Auntie

Respite (verb) – to grant a temporary period of relief, by The Auntie

INVOLVEMENT (An open letter to the extended families of a child with FASD)

If you are sitting there reading this, wishing that there was something you could do....

By The Auntie

Don’t be scared.

Yes, you. I’m talking to you. You aunt, uncle, grandparent, family friend.

You can look on with sympathy. You can listen when your sister/brother/daughter tells you how awful their day has been. You can offer a hug when they tell you that they are struggling.

Then you go back to your house and get on with your FASD free life and feel bad that you can’t do anything to help. Or relieved that you are not going through what they are going through.

You look at your own child/ren and are thankful that you were lucky that those nights, when you had a few too many, before you knew you were pregnant, hadn’t affected your child/ren. Or you may be glad that you recognised early on that you didn’t want to be a parent and don’t have any children.

I don’t have my own children – that previous sentence applies to me. I’m a single auntie. And whilst I have had a lot of involvement with my nephews throughout their lives, I have recently realised a few things that I would like to share with you.

When your sister/brother/daughter tells you how awful their day has been, they are only telling you about 30% of it. It is actually worse. A lot worse. But they are probably reluctant to tell you everything. They’ll do this for all sorts of reasons. They don’t want to burden you; they are trying to pretend it’s not that bad; they are embarrassed by how bad it sounds; they don’t think you will believe them. Whatever their reason, they, quite simply, won’t be honest.

You sympathise, you listen and when you administer that hug, which you believe to be your only possible response to them telling you they are struggling, it will be gratefully received, but it doesn’t really help much.

So you return to your world, in the knowledge that you have done all you can.

No. You haven’t. I’m going to be brutally honest with you now because you need to hear this.

I looked on with sympathy. I listened. I gave the hugs. And then went back to my beautiful, happy calm life knowing that there wasn’t anything more I could do. And I was scared to ask.

And my brother and sister-in-law let me. This is important. They were too proud/worried/scared/desperate to actually tell us how close they were to breaking point.

And for years we, all of us, continued this strange game of “if I don’t say it out loud, it’s not happening”.

Then one day, we caught my sister-in-law off guard. The mask fell off for a split second and she did a weird thing. She was really, truly, brutally honest with us.

And I woke up and smelled the coffee. Well, we were in a coffee shop!

So, draw a line in the sand and say, ok, we’ve maybe got it a bit wrong in the past, but what can we do today and tomorrow that actually helps? There is no point in beating yourselves up for not stepping up in the past, because your suffering family probably aren’t being honest with you and being an auntie to any child is a series of mistakes and trial and error, let alone a child with FAS.

Just don’t be scared. Getting involved doesn’t mean you have to abandon your lovely life and live in the constant turmoil of your FASD family. You’ve probably got turmoil and trauma of your own to deal with as it is. Getting involved doesn’t mean you have to suddenly learn unfamiliar parenting skills. Getting involved doesn’t mean you have to take a crash course in FASD Expertise.

Getting involved can be as simple as popping in for a coffee. This can change the atmosphere in the house and if a meltdown is imminent/happening, the distraction of you popping in for coffee can change everything.

Invite your FASD child to go for a walk.

Have him/her over to bake some cookies.

Take them to feed the ducks.

Be prepared to watch while they show you the latest Little Mix DVD.

Rub their backs and tickle their feet.

Ask their parents. No – wait – TELL their parents you are going to do something with the little one for a couple of hours – what would they recommend?

I had my SuperT for a week-end before Christmas; that respite week-end you can read about elsewhere on this site. Now, I appreciate that not everyone is in my position and may not be able to accommodate a whole week-end, but after school for an hour, even just once a month, will be more appreciated that you know.

SuperT came here and made a bread and butter pudding last week.

Today I took him to the allotment for two hours.

I’m going to have him overnight one Saturday in Jan.

I’m not going back to the time when I honestly believed that there was nothing I could do. I have learned that SuperT and I can rub along nicely together and his mum, his dad and his big brother can have a couple of hours during which there will be no meltdowns. Sometimes my work takes me away and I can’t help. But while I’m home, I can. I’m not scared any more.

I know I have said that the awful stories you hear are likely to be the tip of the iceberg, but…… BUT. What you might not hear about are the moments of joy in between, because these frazzled parents might not remember to tell you about the good times. A child with FASD is capable of enormous love, extreme happiness and tender loveliness. SuperT’s behaviour with me is always great – and your little one will be great with you. You’re not the parent who has to discipline. The rules are probably more relaxed with you. You are not the ones s/he needs to rebel against, like every child/teenager ever born in the whole world will do (given half a chance!) And if it turns out that s/he does have a meltdown whilst with you and you don’t know what to do, then just ask mum and dad. And if it doesn’t work out that time and you have to take them home, then it may work the next time – just keep trying.

And you know what – you will never know, unless you try. If you are sitting there reading this, wishing that there was something you could do……. well, you know what I’m going to say…….

Smell the coffee, drink it and enjoy. (or tea!)

Don’t be scared.

——

Click here if you would like a PDF version of this to print and share:
Involvement: An Open Letter to the Extended Families of a Child with FASD

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.

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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)

 

 

Respite (verb) – to grant a temporary period of relief

Respite (noun)_ A break from something difficult-2

Guest Blogger – The Auntie

(Post 2 of 2 about our respite weekend)

I’m an Auntie. I’m an Auntie to four fabulous young people. Two of each flavour – two nieces and two nephews. And I have a great relationship (I think) with them all.

I am NOT a parent. I think it is important to make that point, as I don’t know the day to day struggles that all parents have in trying to guide their precious bundles through the mire of modern life, protecting, safe-guarding, educating and hoping to facilitate their journey to becoming a stable, capable, able and loving adult.

One of my nephews is adopted and has FASD. He’s 11. Those are the facts but, let’s not stop at the facts, because they don’t define him.

Let’s call him SuperT.

If he was a stick of rock he would have the word “Joy” running through him. He LOVES to dance. He LOVES to sing. He LOVES to laugh. Bordering on obsession? Possibly. But I LOVE Shakespeare… possibly to the point of obsession, so I get it.

What I didn’t get was just how very good his parents were at pretending that they were coping. It took my sister-in-law breaking down in tears, in a coffee shop, with my sister and I, for us to realise the level of stress that she and my brother were under. They had sort of said it before and we knew it was tough, but it wasn’t until that moment of vulnerability from my sis-in-law for us to recognise the call for help.

So I offered to have him for the week-end. It was something I had been thinking about for a while, but hadn’t actually suggested it. So I opened my mouth and said something. I suggested that he come to me the week-end before Christmas, so his parents could spend time doing practical Christmas things and spending time with their older son, who sometimes misses out on some fun because meltdowns happen.

Yes, I planned the week-end so SuperT was constantly occupied. As a non-parent I was able to dedicate the whole week-end to him. Walking, scooting, cooking, bird-watching and, of course, singing and dancing. Lots of singing and dancing. And on the two occasions when behaviour hinted at a possibly over-excited episode, I was able to gather him into my lap and have 5 minutes of quite cuddle time and it passed.

Oh, let me tell you that I am a non-parent that doesn’t have a regular job (I’m an actor) so I don’t have to worry about dead lines, targets and offices etc etc. When I am working, I’m usually in another county, so I’m not always around. But I was able, for this week-end, to put all my energy into activities for SuperT.

I think that his mum had his doubts that the week-end would be a success. There was the caveat that I could always take him home. But last night (I’m writing this shortly after his dad collected him) she texted me to ask if everything was OK, as they had the sudden chance to go out for a pre-Christmas drink with some friends… I was able to assure her that SuperT was gently snoring, following a roast chicken dinner (recently he’s not been eating much in the evening). She and my brother didn’t leave the pub until the staff were putting the chairs on the table!! FABULOUS! She has written that she didn’t get respite, until they got it.

So. What am I trying to say? What have I learnt?

My brother and sis-in-law had a break. This was the whole reason I opened my mouth and said something in the first place. I thought it was a very practical thing – I’m like that – quite practical.

But. Oh my word. I think a lot more than just having a break happened.

I learnt that I can cope with SuperT.

I learnt that SuperT can cope with me. Within 2 hours of being in my house he had put his pjs on…. that told me that he was comfortable with being here. We spent time sitting in the room he was going to sleep in making sure that he was OK with it.

I’m not his parent, so the rules are different. I’m the mad Auntie, who can, maybe, relax the rules a little bit. No, I wouldn’t let him stroke my hair (it’s a thing), but I can let him sit on the kitchen floor doing “The Cup Song” thing with a plastic cup for 20 mins. Remember, I was able to dedicate the whole week-end to him. I not juggling another child and two important jobs. My nerves are not frazzled. I’m not at breaking point. Then he peeled the potatoes for supper.

SuperT took the whole thing in his stride.

Parents of kids with FASD have frazzled nerves. They are probably close to or at breaking point.

You CAN do something.

Pop in for coffee. Take him for a walk. Take him to the park. Sing a song with him. Let him show you something on his phone. Change the atmosphere.

When you are removed from the day to day, you don’t always see that the breaking point is looming. And, trust me, you won’t be told. These parents that are determined not to give up on their kids, are also really crap at being honest about how much they are struggling. Don’t wait for them to ask for help. Just turn up.

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See also:
Respite (noun): A break from something difficult, by FASD_Mum