Begging for Support

Blog_BegBy SB

There have been times in this FASD journey where I have literally been reduced to begging for the help that our son deserves and needs. Yesterday was another such day. Some boxes had been ticked somewhere in The System. I had been feeling really good for the first time in ages at the support that is in place around our child. It’s been working. It makes sense. The people involved are getting to know each other. There is a common language developing across the teams.

So, of course, without warning, yet another service had decided that because our son was doing well enough (despite having been referred here not long ago due to a series of crises) and because he had had x number of sessions, it was time to boot him out of their system.

Hold on. Wait? What?

Oh no you don’t.

Not yet.

Mamma Bear woke up and with the nicest smile she could manage laid out 10,000 reasons why this was not a good idea. We’d be happy to put all this in writing, of course, not as a complaint, but as a compliment, she said, because your service has made such an important contribution to our son’s wellbeing and because we know statistically he’s just entering the hardest years for those with FASD. You matter. This matters. Too few people out there ‘get’ FASD. We shouldn’t have to waste key NHS resources to help others who might not be familiar with our family and our son’s needs get up to speed on these things. Too often for people with FASD, it takes years for the supports to be finally put in place. Then, when they start working, they are removed. We don’t want that to happen to our son at such a critical time in his life – he’s just turning 14. We could share the stats with you if you like of the addictions, the problems with the law, the homelessness, the vulnerability he is facing as teen with FASD preparing to enter adulthood.

Please, please don’t discharge him from your service. Look – it’s been working.  We just shared with you several examples of how what you have taught him has worked. But let’s be honest, this is work you would normally do with a much younger child. What would normally come next? There are a whole host of other skills he will need to learn and master, other conversations he will need to practice. You can’t honestly believe that we are out of the woods and no other crises are likely to come up?  This service has the ability to see him until he is 19, why discharge him now?  Let’s spread out the sessions…just keep him on the books in case something else heats up. C’mon, let’s think this through.

Please, he needs you.  We need you. Not because what we are learning with you is rocket science, but because he’s now used to you, to this. It’s working. Do you need me to lie and say it’s not? He has a language he uses here. Why should he have to spend a year or more waiting for a different referral, building trust and a way of interacting with another therapist? It makes no sense. Sorry, we know you are not the one who makes the rules, but please don’t discharge him until we can speak with whomever it is who does.

I know I am begging. I am shameless about this. We are literally fighting for our child’s life. I don’t say that lightly, I mean it. We have a few years here to get this right – to give him the tools and the words he will need as he turns toward adulthood. I can tell you stories of people with FASD who we know who didn’t have support and who had to overcome things we don’t want any young person to have to cope with. This support and help matters. How is it possible that a young person with a brain-based disability who is vulnerable in many ways, who has receptive language problems, who is grappling with some of the major issues of puberty magnified by an intellectual disability that makes these years even more of a minefield could NOT qualify for your help?

Absolutely we can help identify specific goals! Absolutely we can work with you on a targeted plan. Absolutely we agree it would be good to get all the professionals around one table to make sure his transition into adulthood is getting in place now while there is time to get it right.

…and so it went…

Another reprieve. Sixteen more weeks. We calculate in our head. This will get him at least into Key Stage 4. This gets us well into the new school year. We will see what happens as these coming months unfold.

For too many, today might have been the end of the sessions. For too many, they don’t even make it this far.

Why is this such a battle all the time? This, in a country that says it is trying to tackle child mental health in a serious way while simultaneously making it so hard to access services?

How is it not a better use of resources to give people skills to be able to help them cope with a lifelong disability rather than waiting until a crisis hits, at great cost to the child/young person and the family? How is it not worthwhile to do more training for all professionals in this condition that experts believe affects more than autism?

How can we possibly leave people with FASD and their families struggling on their own when there are known strategies that can help?

Caring societies are meant to care. They are meant to open doors, make the way easier for those who need an extra hand. They are supposed to enrich the lives of those vulnerable individuals who deserve support, encouragement and understanding.

Not slam doors in the faces of those parents seeking help for a struggling child. Not tell someone whose child has a brain-based disability that it’s their parenting and not compromised brain wiring that is causing the problems. Not kick students out of schools because the educators haven’t educated themselves on the executive functioning and cognitive issues that occur with FASD. These last two haven’t happened to us but they certainly do happen all too often, in too many places.

Yes, today we had a small victory in clinging onto a service that does give us strategies. But we really shouldn’t have to beg.

Seriously, society … we shouldn’t have to beg.

 

 

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Always On – Hypervigilance and FASD

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By SB_FASD

Hypervigilance is a term that keeps cropping up lately.

I first used it in consciously last month in a meeting with two therapists where my husband and I were discussing our son when he wasn’t present. I was relaying a story about going through charity shops in the town with our little one with FASD. I was talking about how I feel the need to be hypervigilant to anticipate how to deflect the negatives that might come his way – perhaps due to how he is dressed or the way he might be acting. It’s like trying to extend a big protective bubble around my son as he walks through the world, worried that it could pop at any moment.

Mirriam-Webster defines hypervigilance as “the state of being highly or abnormally alert to potential danger or threat.” Yep. That’s me.  It can be linked to post-traumatic stress disorders but that is not what affects me. I just live nearly all of every day in a super alert state, listening, anticipating, waiting, trying to deflect a negative outcome or some situation from spiralling into a fully heightened scene. An article, “Hypervigilance in Autism Parents” struck home for many of us raising children with FASD.

I do not relax. Or very rarely. I realised THIS is why I wake up and watch mindless TV in the middle of the night – it’s the only time at home when I can relax. Everyone is asleep. There is no chance of things going from zero to 100 at 3.00 am.

I am not writing this to complain. It makes me empathise. This feeling that I have is nothing compared to what my son experiences. Yes, I am constantly anticipating, analysing, assessing where things are and where they are going – living on edge of a possible meltdown coming from who-knows-what stimuli next. It is exhausting. It’s not a very nice way to be. How I would like to kick back my heels and sit in the garden with a good book and just relax. This is not going to happen. I’ll survive.

But my 13-year old son, he lives in this sort of state multiplied by 100 or 1,000 times.  His anxieties are through the roof. At different times someone’s breath on a strawberry panics him. A buzzing fly or a pan on the stove sizzling too loudly or a low-petrol reading in the car or whatever it is at that moment – things I do not even notice – can raise his internal alarms so high that he cannot contain himself, let alone explain his fears or his worries. His behaviours escalate and he loses all impulse control. It can be quick and forceful and things can be smashed in the process.

He has been getting some counselling lately that is helping. He’s working with therapists who help him have the words and awareness to identify how he is feeling, to spot when his anxieties are increasing, to put in place strategies for each of those different stages. Where once he only knew two states of being – happy or angry – now he has been learnings there are steps along the way and things he can do (and that we can all do) to help him move down that ladder.

It’s not rocket science – and it is absurd that these sorts of tools are not made more available early on when a child starts showing these sorts of problems. And it is really tragic that many if not most families affected by FASD are not able to access these kind of therapeutic settings that can really change things around.

This week, I have been learning that the therapies help us as much as they help our son by giving us all a common language.

We’ve had a bit of a rocky road this week. Our son’s school went off timetable for a special “Arts Week.” They are doing absolutely amazing things. But it pushed our guy to the edge, if not over. We had a car ride to an evening event at the school where he was starting to become dangerous – the first journey like this in a very long time. In between cursing and bad language and taking off his seat belt and throwing things, he was telling us “I can’t handle it.” “I’m too tired.” “I just want to go home.” “I want to play with slime, that will help me.” In the past we would have kept going, pushing him too far. This night, we honoured him – we listened to what he was saying. We turned around. We went home. He played with slime. He danced in a body sock. We didn’t have a meltdown.

I felt oddly good.

What’s the point of encouraging him to use his words to tell us how he feels if we don’t act on that and show him that his opinion and feelings matter? He identified his feelings, stated his needs, came up with a solution for how to self-regulate. Progress!

The next night, again after a day off their normal schedule, our son was becoming dysregulated at home. I was frustrated, tired, alarmed that things were starting to fly – always worried about breakage, but also fighting that sense of disappointment and fear for the future that bubbles up when I am feeling weaker than usual.  I lost it. I heard myself saying, probably too loudly, “That’s enough! I am stressed. If I had a scale of 0-6 like you do, I would be a 7 right now. I am going to explode. I need quiet. We are both going to sit here, quietly. Don’t say anything. Just sit!”  And you know what? He did. I ignored what others might have interpreted as smirks, because I could see these facial expressions were signs he was nervous and trying to register this unexpected new information. I sat there on his bed with him without either of us saying a word for about 30 minutes – he was on his phone, I was on my computer. Every once in a while, he’d move his leg a bit closer to mine for a scratch. And the scene that had been horrible became calm.

I sat there thinking about what had been staring me in the face – we need to use these tools too for our own stress levels. To build a common language with our son. Why should he be the only one in the family with a stress chart with identified strategies for how to cope? He needs a guidebook for how to help us as well. He is the one with trouble reading others – of course he needs a road map too. I can’t assume he understands instinctively what I am feeling.

I have been learning more about theory of mind. It’s tied up with developmental stages – when a person begins to understand that other people experience the world differently than they do. Some people with various disabilities struggle with this.

I remember our son on the phone when he was smaller, holding up something that my husband couldn’t see on the other end of the audio call – “Here Dad, it’s this one.” One of my favourites was “No Mummy, not there – scratch where it’s itchy.”  He didn’t get it that I couldn’t know where the itch was. Lately I have been increasingly direct with him, saying things others might think are “obvious”. “I am tired and I am going to bed now. Please don’t ask me again tonight for another snack.” Telling him what I am feeling and therefore what I expect from him is working.

I have been taking cues from adults with FASD who find help in mindfulness. It helps me with the hypervigilance to recognise that I have the power in a moment– any moment – to find something to focus on, if only for a short time, to help me ground myself, to slow my breathing. I hope our son will eventually learn more about these techniques. But in the meantime, I can invite him to come sit by the dog and feel how soft her ears are. I can comment on how soft the breeze feels on my face. Or point out how very blue the sky looks. Building blocks. Little moments lead to big breakthroughs. Step by step. I believe we have to see progress and celebrate it, no matter how small.

As I am realising I am in a hypervigilant state most of the time, I am using this understanding to help me better understand my son. I am trying to use the tools we are learning to help him understand not just himself but others too.  But I guess I need to do more to understand me too and what I need. So, yes, the word of the week is “hypervigilance.”

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Some additional resources:

Emotional thermometers and other printable resources from here (there are lots of interesting resources on this site):  http://do2learn.com/…/SocialSkil…/Stress/StressTriggers.html

This ‘brain house’ model is also helpful to teach children about the ‘upstairs brain’ and the ‘downstairs brain’: https://www.heysigmund.com/how-to-teach-kids-about-the-bra…/

 

 

 

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This Parent-Advocate Celebrates Messy Trails and Snails

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By SB_FASD

Our son’s taxi was late. He was all ready for school. He had in his bag photo albums from when he was a baby and a clipping of a news story about our local FASD support group. I had work to do, I was feeling pressure. Our son hadn’t eaten breakfast again. We were waiting outside so the dog would not become further excited. It was raining. I was in my pjs. I wasn’t in my mum-of-the-year mindset. I wasn’t there. I wasn’t in the moment.

And then my son noticed three snails.

They were climbing a post by our door. Three different sizes. The biggest one (the mum, he said) was lagging behind.  We stood there, my son and I, for nearly 30 minutes discussing those snails, where they were going, what they were seeing, what they might be thinking. I hate snails. But on this morning, I loved them and was fascinated by them, totally engrossed by them – right there with my son. In his moment. I even learned something watching them come out of their shells when making what seemed like lateral moves around corners from up high.

Sometimes we don’t know where we are going or what it takes to get there. But you do what you have to do. You improvise even if you are not sure exactly where things are headed. You just keep moving.

The taxi came and our little one went off to school. I started thinking about mindfulness and the advice we often receive to simply (!) slow down. I was thinking about the many times our son shows us that due to his FASD, he is mindful of things I often don’t notice. I thanked him before he went to school for being so observant. I told him without him there I never would have noticed those snails today.

I have been busy. Good busy. But busy. The kind of busy that means you go to work early and miss seeing your kids off to school. The kind of busy that when you come home from work, your face is still in the computer when the kids are looking for a chat or the dog wants a cuddle or your husband’s in the kitchen cursing the stove yet again while trying to feed us all. The wake-up-in-the-middle-of-the-night-and-do-more kind of busy. And it was worth it. Probably if I had it to do over, I would do all of that again. I will do all of that again.

But I came across this quote in the midst of this week and it spoke to me about how we define our terms.

I lied and said I was busy.
I was busy;
but not in a way most people understand.

I was busy taking deeper breaths.
I was busy silencing irrational thoughts.
I was busy calming a racing heart.
I was busy telling myself I am okay. 

Sometimes, this is my busy –
and I will not apologize for it.”
                ― Brittin Oakman

 There are lots of ways to be ‘busy.’

There was another piece doing its rounds in social media this week, by Alethea Mshar “Dear Special Needs Mom Who Feels Invisible”:

I want you to know that I see you…I know you feel invisible, like nobody notices any of it. But I want you to know I notice you. I see you relentlessly pushing onward. I see you keep choosing to do everything in your power to give your child the best possible care at home, in school, at therapy and the doctor. What you’re doing matters. It’s worth it.

On those days when you wonder if you can do it another minute, I want you to know I see you. I want you to know you’re beautiful. I want you to know it’s worth it. I want you to know you aren’t alone. I want you to know love is what matters most, and you have that nailed.

And on those days when you have breakthroughs, those times when the hard work pays off and success is yours to cherish, I see you then too, and I am proud of you. Whichever day today is, you’re worthy, you’re good and I see you.

This week some of us brought the voices of many of us to Parliament and to the Royal Society of Medicine. We stood side by side with each other and with medical, educational and epidemiological experts to share the truths that we have learned in our combined experiences as people with FASD, birth parents, adoptive parents, foster carers. We are strong, we are warriors, we are standing firm. Hear Our Voices was the simple but powerful message we carried with us from the thousands in our networks.

There have been some unexpected moves, some lateral moves. Times when we have come out of our shells and out of our comfort zones. We are not entirely sure where we are going. We sometimes feel like we are too busy trying to simply keep breathing that we are not accomplishing what we hope to accomplish. Sometimes it is enough to be seen. But the goal in the end is to be heard and for the messages we are saying to be acted upon.

My son lives in the moment – or as Dr Cassie Jackson calls it, the ‘Here and Now.”  There is beauty in entering into his world – this is what I tried to say to the doctors and psychiatrists at the Royal Society of Medicine. While the medical community and the policy makers and the number crunchers all try to assess FASD from their undeniably important analytical perspectives, we have to take pride in the messiness of being parent advocates. And we honour and deeply respect those of us with FASD who are self-advocates. The most powerful moment of this week was when a teen with FASD spoke her truth to parliamentarians and when they spoke back directly to her, affirming the impact she had made.

We have a right to be at these tables even if we are a bit crumpled around the edges, less smooth than we’d like to be. As real as that life-worn Velveteen Rabbit we tell our kids about.

I’ll admit here among friends that I had to dig the dress trousers I wore that day from the bottom of a dirty laundry pile and my shoes were not shined as I walked into Parliament.  I am sure there is still some sort of liquid vegetable at the bottom of our refrigerator drawer and the freezer cannot close properly because it so desperately needs defrosting. This life is messy.

Being a parent advocate is not always pretty and it is not straightforward. It feels slow. Sometimes it can seem like an impossible juggling act when the demands at home are so intense and those moments away from my children feel like I am failing them.

But when my little one proudly tucked into his school bag so he could show his friends and teachers a positively framed news article titled “Calling All Superheroes” that highlighted “support for those with a brain condition” – I knew, I KNEW this journey is worthwhile.  We will get there, even if it feels at times like a snail’s pace. This next generation is strong and with our help they will be better equipped than those who have gone before them. They have FASD role models paving the way. We all are standing on the shoulders of giants. We are not fighting the same old battles. We are moving this into a whole new playing field.

And my son who sees more than I do reminded me this week that even a snail’s pace can be a fascinating journey.

I suspect that once we break out of our comfort zones further – bringing with us to static rooms our messy lives and our powerful truths – change can come faster and with more innovation than we can imagine now.

And as we who live it all all know, where ever we FASD families go the trails we leave sparkle and glitter. 🤣

For anyone who doubts that, I have proof. In this one snail- and slime-loving house – I have yet to scrape the remaining glitter slime off our dining room table…and the snails are out there again on this wet morning. Yes, this weekend’s task is to tidy up around here after a busy week of being both seen and heard…reality calls…

 

 

 

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Airing Dirty Laundry

DirtyLaundry

By SB_FASD

I know I’m weird. I have never really minded doing the laundry. I was taught early and well to take great satisfaction from jobs with clear results. It starts off dirty. A few steps and voila! It’s clean. I can see the proof that I accomplished something. In fact, few things are more satisfying than seeing clean-smelling, neatly folded, bright and tidy clothes tucked into drawers, everything crisp and orderly – proof of course that I am a Good Mum.

I know you can see where this is going.

In our house, thanks in large part to FASD (though, to be fair, not entirely due to FASD), laundry is not that simple.

First, there is the volume. A sensory-seeker who loves mud and slime, who might chew on clothing when under stress, who spits out foods that his body rejects and who might not be able to contain the need to wipe a runny nose until finding a tissue naturally generates massive amounts of laundry. There are up to four changes a day due to continence problems that arise from food allergies and other issues around digestion/food, generating laundry that needs to be addressed daily and urgently and without shaming or blaming.  There are of course also favourite stretchy tops and soft trousers that need to be nearly always available.

I try to keep a smile, even as my heart sinks watching the stack(s) of laundry grow.

Attacking this gets complicated.

Our son has some autistic-type traits directly related to his FASD – damage caused to his brain by exposure to alcohol in the womb. He has always had a very special and intense focus on washing machines. I get it, I really do. What’s not to like? The whirring and spinning, bubbles and sounds can be soothing and captivating. Our guy used to sleep in a pushchair parked in front of washing machines (which in England are front-loading and have glass windows).

His interest has deepened. He has become an expert of sorts by watching endless hours of YouTube videos and playing with his armada of toy washing machines which he has begun taking apart and putting back together again with varying success. When he goes to one of his favourite destinations – Currys – he discusses the technical specifications of most top brands with the staff. Armed with that kind of knowledge, he gets nervous and anxious when our ancient washing machine at home rattles a bit in the spin cycle. He worries it is ‘unbalanced’. If he sees a ‘suds lock’, his anxieties erupt if we don’t shut down the machine. He pleads with us to buy a new one. He knows which will fit the space we have.

Once upon a time I might have thought I needed to help him ‘get over it’ – to push on with my own schedule and just do the laundry despite his anxiety.  But we are the ones who had to learn. FASD is brain-based. To make it more likely that he can cope with even seemingly mundane things, we have to adapt the environment. In the FASD community this is a bit of a mantra, deriving from the ‘neurobehavioural’ approach made popular by Diane Malbin.

So this raises logistical issues related to timing – if we do laundry when our guy is slightly dysregulated, overly tired or anxious it may lead to a meltdown (although the line is never exactly clear, as sometimes watching the machine can help soothe him).

Then there are practical issues – we need to hang the laundry to dry. Given England’s usual wet skies, that means this laundry is hanging on drying racks in our dining room – making the spaces more chaotic than they already are, which is not ideal for someone with FASD. It also limits the number of loads we can do on a given day (our dryer, never overly cooperative, has died.) On a given day you are likely to see half of our dining table covered in folded laundry.

Which leads us then to the storage issue. Our guy cannot organise himself. His most used clothes are in plastic crates so he can see them and access them. When he looks for something, it all gets jumbled. I could be angry about this, but there’s no point.

Others might think I am enabling ‘bad habits’ by not forcing him to clean his room himself. But while he may be 13, like many children with FASD he has a social/emotion level of about half his age. No, I have no intention that our son will always have a room that looks like this. But in a world where getting him to school and keeping his anxieties down are the top priorities, I have learned over time to priortise my own goals. Of course, the tidiness of his room matters because it helps him to be in a calm and orderly space. We do try to keep it somewhat manageable for that reason and I take lead responsibility on this, but not so I can fulfill my maternal dreams of nicely stacked, sweet-smelling laundry. I do it for him.

But in the end, who cares about our laundry? Why am I writing this?

I believe that alternative parenting needs to be better understood.

People need to know there are layers upon layers of complexities to parenting in houses affected by FASD.

It’s important to look a bit deeper when someone is parenting in a way you find so outside of your box that you are tempted to criticise. You might just see some magic happening.

Whether or not I chastise my son for tossing his socks after he takes them off, whether or not I turn a blind eye to that smear on his sleeve, whether or not I allow a stack of soiled laundry to grow in the bathroom and wait until our son is asleep or out of the house to do the laundry – these are choices based on strategies that might not be apparent to the casual viewer. Of course I see these things and yes, despite the above, I still suppress guilt every day about it all. I do want to be a perfect mum. I do want my house to be perfect – or at least, non-toxic. I admit it, I want stacks of nicely folded sweet-smelling laundry to be IN every drawer in our home.

A little while ago, my son reminded me some clothes in the washer were done and needed to be hung to dry. The he asked if I had any laundry he might do. We agreed he could wash a sheet from his bed. After he loaded and started the machine, he came to me and expressed concern that there might be too many suds. I told him if that made him anxious he could go to his room and I would watch the machine for him. He did. He went and got himself changed and dressed (he was also making slime and has a cold, he realized his clothes needed changing). Most ended up in designated piles. He is content. We have had no meltdowns, no harsh words.

Perhaps to the outside world none of this is remarkable. But in that last paragraph there are many positive signs for the future. During my first week of university I met a man from a large family who had never used a washing machine before in his life. My son with a learning disability knows how to do this at the age of 13. He expressed to me his worries, we agreed a strategy for how to deal with them and avoided the worst outcome of a potentially spiraling situation. There can be glimmers of huge progress in the simplest of things, when we stop to see it.

We can’t change some things around here. But we can change how we react to them. We can adapt and learn how to support our son via his interests to become as independent as he can be. We have had to step right outside of that box of expectations that we had ingrained within us and we have allowed our concept of parenting to expand. We are learning to give it time and patience. We are trying to have more fun along the way.

It really doesn’t hurt anyone or anything to indulge our son in an extra spin cycle or two now and then. Who knew?

He did.

He’s been showing us all along what he needs.

 

 

 

 

 

 

 

 

 

Take Care

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By MB_FASD (and a side note from SB_FASD)

And so, from hour to hour, we ripe and ripe.
And then, from hour to hour, we rot and rot;
And thereby hangs a tale.
(As You Like it, William Shakespeare)

I like a good Shakespeare quote, and this one fits the circumstances of the past couple of weeks, at least for me.

Parents and carers of kids with FASD are busy. So busy. There’s never enough time. There just isn’t. For us, when you aren’t dealing with the day to day, then there is the relationship with school to manage, or appointments at the doctor, a seemingly endless round of trips to one hospital or another, from therapist to counsellor, from consultant to nurse. Even the extra loads of washing take time.

The supervision of the day takes a huge amount of energy, and at almost any time, a meltdown can bring everything to halt for hours while we help our young man to re-regulate and things can get back to (FASD) normal.

When you combine all this with work, the rest of the family and everyday life, time is squeezed. There just aren’t enough hours in the day. So things slide. Sometimes important things. That’s what’s been happening to me. I let things go by that I should have been noticing, or I did notice but didn’t pay attention to. My wife worried at me to look after mysef, to get some checks done. And I brushed her advice off.

Sinking into the sofa exhausted at the end of the day, every day, had become my normal. Having a little afternoon nap had become normal. I got extremely thirsty all the time. I felt below par every day. This was my normal. And I wrote it off to the stress of living with a child with FASD (and another with chronic fatigue).

I did nothing.

But, it came back to haunt me. Just like the advice on the aeroplane, if the oxygen mask falls then put your own on before trying to assist others, I should have been taking care of myself.

A couple of weeks ago I went to the doctor complaining of a persistent cough, which had lasted since a virus knocked me flat in February and triggered my asthma. She asked a lot of questions, and sent me for blood tests and chest x-rays.

Fast forward a few days and the doctor’s surgery calls and tells me to come in that morning. An hour later she tells me I have Type 2 diabetes, and after discussion, I have probably been in an acute phase of the condition for at least 18 months. Looking at the blood sugar results she tells me it’s ‘a bloody miracle’ I’m not in a coma.

Later, with the diabetes nurse, she shows me how to use a blood sugar testing monitor. The result is too high for the machine to read – it just says “HI” on its little screen, meaning my blood sugar is over 33, when I’m aiming for 8! For good measure I need to get my cholestorol level down. And lose a bit of weight, although I’ve lost two stone since the doctor last weighed me as a result of the untreated diabetes.

Back home, my diet changes immediately. Gone are the carbs, salty and sugary items that made up a lot of my diet – and that includes the grapes and yogurts I was eating a lot of. Convenience eating is a thing of the past. Everything is measured, considered and prepared from scratch. My wife is delighted about this bit, and a Mediterranean Cooking for Diabetics book appears immediately. She gets to cook all sorts of things she loves!

Two weeks on (with the help of some meds) my blood sugar is low and relatively stable. I’m learning to live with diabetes and starting to feel better. I’m not getting up two or three times a night to pee. I’m feeling more rested from a night’s sleep. I’m less prone (I think, check in with my wife) to being irritable because of fatigue. Things are on the up.

This means more energy to deal with the things that life throws at you. More energy to look after our son. I’ve started taking care of myself, and it means I am in two short weeks, better able to take care of him.

And that, in a nutshell, is the moral of the story. Take the time to take care of yourself, so you can take care of the others in your life. And how necessary is that when you have a young one with FASD in the family. They need you to be at the top of your game. Every day.

Listen to your body. Act on the signals it sends. Try not to “rot and rot” as the bard put it.

Take care.

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A note from SB

I knew he was sick. He says I “worried” at him. It was more than that. I knew what I was seeing, my father had diabetes. Combined with high cholesterol and heart issues, diabetes took my dad’s foot and contributed to years of very bad health leading to an early death.
 
I was scared by what I was seeing.
 
And yet, the days and weeks and months and possibly years passed. I cannot tell you how guilty I felt when I realised not just that he has diabetes, but how serious it had become.
 
Because of FASD, we are faced every day with the kind of in-your-face urgent issues that cannot be ignored. Of course we are tired. Of course we are snappy with each other. Of course we feel down. Of course we take short cuts. Our interactions have been curt and far from the hours-long discussions we used to have about issues big and small. I felt he was being selfish by not looking after himself. I felt he was whinging. I grew up in a “if-your-cut-hand-is-not-falling-off-keep-playing” kind of large family. I had told him (repeatedly, and even in front of his mother a couple of times) what I thought was wrong. If he chose not to act on it, I was not going to nag. 

Except I didn’t grant him, my partner in this life, the same courtesy I grant to our child with FASD.  I never thought he was as badly affected as he is and that a medical condition might be underlying behaviours. I nearly cried when one of my sister-in-law’s friends who has diabetes said that she had never heard of anyone having readings as high as his and that this must be making it really hard for him to control mood swings. I didn’t for a second imagine his outbursts that threw me through the roof myself might actually be due to blood sugar swings. I didn’t think his behaviour might be a symptom too – and that is the mantra of FASD parenting. I should have trusted my lovely husband enough to see this for what it was.
 
I feel guilty.
 
Deep, deep guilt. 
 
I am surrounded by people who have medical conditions that are demanding. Diabetes. FASD. Chronic Fatigue Syndrome/ME. I am certain the stress we all live under is playing a negative role in all of this. I myself was in hospital a couple of years ago with neurological issues.

This life is not easy. There’s no outlet, no fun, no release. Or at least we don’t prioritise finding ways to lighten our load. I always feel there is more I should be doing. And now I need to learn about carbohydrates that convert from sugars and figure out how to integrate new foods into a home where one of us has major sensory issues related to food. I am a short order chef these days, making multiple foods. More pressure. (Yes, I bought the Mediterranean Cookbook for Diabetics, sure, but I have yet to read it.)

The pace is relentless. But if you are reading this, most likely you are familiar with it.

We are not alone. I know of too many individuals and families coping with FASD where the stresses drive peoples’ health into the ground, where relationships get torn to the point of no return, where depression takes hold. 

We have to do better. As my husband says above, we have to “take care”.  We have to take care of ourselves and we also have to take care of each other too…maybe a bit more aggressively than the British culture is comfortable with. Maybe we need to force those difficult conversations. Lives are at stake. This isn’t optional.

I am glad he caught this before worse harm was done. I am thankful it’s something we can manage. He didn’t mention above that they also were screening for cancer at the same time. There is a reason why we haven’t posted a blog post in a little while. It’s been quite a ride around here lately. 
 
…now, where is that reminder about the smear I was due for ages ago…?

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Crunch Time – Beyond Broken Doors and Dreams

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This piece also appeared in the Huffington Post under the title: “The Moment You Reach Breaking Point As A Parent

By SB_FASD

There is a certain sound when something hollow gives way in the face of force. A crunch and a silence that leaves us a bit stunned for a moment. We sit there, frozen, as the knowledge sinks in that there’s no going back. There’s only forward from this spot.

Parents with children with Foetal Alcohol Spectrum Disorders and other disabilities are often familiar with this sound. Doors, walls, toys, electronics. Spirits. Dreams. Hopes. Things cave in when under enough pressure – whether it’s quick and impulsive or constant and unrelenting.

We are faced with big and small moments where realities compress down into one critical instant. And we are left with a choice of what do to when we realise something has broken – around us, within us.

I was standing in that space last night. It has been a difficult few days. It’s a school holiday. It’s never easy when we go off-schedule, especially when combined with other family and work pressures. Resilience is low.

England’s relentless gloomy weather lifted for just a while. We were trying to be outside, active. Maybe we tried too much. It doesn’t matter how we got there, it happened. It will happen again.

I had a choice. I said something unkind. I could lay out the reasons – how after hours and hours of our son teetering on dysregulation my own tensions had ratcheted up to the point where I lost my filter. I think you’d understand. It even involved a dog with digestive issues. A certain person with sensory issues trod through the results and spread it across two floors and onto his bed. It ended up with the duvet being thrown down stairs, panic from too many bubbles in a bath and my inability when personally exhausted to handle multiple crises on multiple levels in one moment. It was fairly spectacular in retrospect.

I don’t even know for certain that my son registered my unkind comment. We certainly were back on solid ground not long after, once the dog was outside, the bubbles were tamed and the bedding changed. The floors cleaned. But that is not the point. I know what I said.

Maybe others have those things they have said in those moments. Words we cannot recover. There is no going back, only going forward.

So much is written about children with ‘violent’ behaviours. Our schools and our culture focus on stamping out ‘rudeness’ and ‘aggression.’ There is a great pressure on parents to raise children who conform, who ‘fit in.’ But some children don’t conform to societal rules because they cannot due to the way their brains are wired – at least not unless significant accommodations are made. It’s not because they are naughty.

I am pretty on top of this ‘alternative parenting’ concept and yet I still feel the weight of that external pressure every single day. Someone gives a funny look when we are out and our son – who is trying his hardest but is struggling – might use choice language. Someone frowns in disgust when they see our guy on a path, wearing some pink lipstick that was a give-away on a pop magazine, ignoring his joy while projecting her disdain. A relative who otherwise gets it writes in capital letters on Facebook that it’s time to cut our son’s hair that he has proudly been growing for a year. We watch TV shows full of happy families, see pictures in social media of friends on idyllic family holidays. Never mind exotic beaches, we can’t manage a meal out without a server having to bring us five extra forks because the ones at the table were all ‘bent’ – and by then it’s too late as our son is just not going to eat the sausage and mash we just paid for, no matter how hard the parents at the adjacent table stare at us. Yes, that was all part of our yesterday. Pressure comes at us from every direction as parents of a child who is different. Teflon skin apparently has its breaking point too.

Once something has given way under such pressure, there is no going back. You can sometimes patch things up, but not everything can be ‘fixed.’

It doesn’t always happen with an explosive jolt – like a kick landing on an already damaged bedroom door, snapping off its lower hinge yet again (that was two days ago).  It doesn’t always happen with a swift snap – as when a new beloved hairdressing doll gets shattered when thrown down the stairs after a pretty amazing attempt at a fishtail braid gets muddled at the end (also two days ago). Sometimes the pressure just builds and builds outside us – like a diver going deeper and deeper. Even when they surface they just can’t breathe. The body has dealt with so much pressure for so long, they need help to function again in the ’normal’ (whatever that is).

I picture that tiny defenseless developing embryo or foetus, doing its best to grow in all its complexity, day by magical day in utero, being pressured by alcohol pushing and pulsing where it should never have been. I think of the billions of neural connections starting to fire away, being washed repeatedly in the womb by a torrent of teratogenic ethanol delivered straight across that placenta into the space meant to be safest of all. I imagine that alcohol sitting there for days, with mum not knowing that long after the sweetness or relief has left her lips, it continues to press its mark on a new person’s future, dissolving unknown potential, collapsing the full range of that little being’s abilities though thankfully unable to alter its magnificent soul.

Yes. There are pressures and forces outside us, within us that sometimes we cannot control.

Yes. There is no going back, only going forward.

We each have a choice. What do we do when ‘perfect’ is no longer attainable?  The door is broken. The words were said. The alcohol did its damage. We are here, now. Where do we go next?

A friend who is an adult with FASD has the answer for those who are lost, confused, who don’t know what to do when the big emotions flow. Where there are no textbook answers for what to do next, she says, “Ask yourself what would love do?”*

Love would forgive – others, ourselves, society. Love would hold close and not push away. Love would embrace and find peace. Love would forget about perfection and revel in the joy that can be found in the here and now.

There is always a way forward. In that space after something has broken, there is always a choice. Accept the reality. Breathe deeply in that pause. And then? Choose love.

 

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*With thanks as always to Savanna Pietrantonio, Hamilton (Ontario, Canada) FASD Parent & Caregiver Support Group and FASD: Flying with Broken Wings Facebook Support Group.

 

 

 

 

 

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Our Nine Million Moments of Marriage

Blog_Anniversary

This post also appeared in the Huffington Post UK.

By SB_FASD

Wedding anniversaries are bittersweet.  We look back at the pictures of joyful abandon. Younger, shinier – our faces full of love driving us toward a future we had just bought into publicly, standing before all those we cared most about in this world. It was one big whomping affirmation that yes, we were in this together now, forever.

A magic day. We felt uplifted. Friends and family literally sang us to the altar. Loved ones shared in the ceremony that made us a family unit as we waited for the children we knew we wanted. We ran on the beach, popped the champagne, danced and sang until dawn.

We said we did.

And we are.

But it’s not easy.

Life gets in the way. In families affected by Foetal Alcohol Spectrum Disorders, the pace of life can get so altered that before you know it, the whole rhythm is chaotic, off beat. And even very strong marriages can be tested and stretched beyond recognition.

It’s not because the love dies. It’s not because there are any regrets. It’s not to say that what has grown isn’t more real and more beautiful than what was there before. It’s just unrecognizable from those early heady days of skipping through the sunshine.  My sadness is that I wish our children knew those two more optimistic people. I wish I could find ways for them to know the light-heartedness and giggles that were such a part of the birth of this family.

Eighteen years later, here we are. We’re still standing.

But some days are so heavy that all I can do is put my head on a pillow and wait for a new one to come.

Moments can fly so fast and furious that I scream out too (all too often at my husband), when my calm is needed most.

We put out fires.

A sea of paperwork and logistics floods our weeks, leaving only a few weary hours when we should try to find fun but instead we retreat, as we let it all sink in.

Laughter gets muted as we try to avoid highs and lows and just keep things even rather than rocking the boat.

We are constantly trying to calm the seas.

Spices and new flavours fall off the menu. Soggy oven fries rule.

We speak less, play less, joke less, adventure into the world less. We become isolated – not just from all those cheering family and friends who gathered at our wedding but also from each other. That person we ran toward on our wedding day becomes the only solid partner we have in this struggle, the one who is in it, truly in it. So rather than holding them up, we knock at them when we want to yell, when we can’t hold it together any longer. When we need someone to blame. Some very rare couples are able to rise above this. Others fall apart due to the stresses. The rest of us muddle through, taking short cuts based on a whole lot of reserves of good will. It’s messy and disappointing at times. But it’s real. And rarely discussed.

We put on that happy face as we turn toward the world when really all we want is time alone again to reconnect, a babysitter so we can go out to a meal alone for no reason – or at least to celebrate our anniversary. We just want to watch a tv show and snuggle without worrying about wasting time that should be spent reviewing EHCPs or coordinating work schedules with medical appointments, without worrying about the 1,000 home improvements and tasks that should have been done but that we couldn’t get to due to some urgent something that had to be attended to. Without second guessing those moments that we wish we could do over.

We were easier as a couple to be around when all we had were our dreams and our love that we wore on our sleeves. I feel the weight of our family story when I sit with friends on those very rare occasions when we are out. Our tensions are very real and they are not going away. But this is us. It’s not always pretty.

And then one morning you wake up and it’s your anniversary again and you have no plans to celebrate, no cards, no presents because the last several days have been long and hard and there hasn’t been time or you haven’t made time to think about this. Or some combination of the two. A sorry state of affairs for the jet-setting couple that married in a resort town by the beach so you could go there regularly for anniversaries. As if.

You find eighteen years later that like the world-weary Velveteen Rabbit your once shiny marriage is rugged, tattered and perhaps stretching at the seams but it’s still lovely and still loved. It’s not exciting. It’s not wild. It’s tired and worn. And full of “I wish I hadn’t done thats” or “said thats”. It’s neglected and definitely taken for granted.

But it’s there. And that’s not nothing. In fact, it’s a whole lot of something. It’s 6,570 days of ensuring we did not go to bed angry at each other. It’s 157,680 hours of commitment and belief that together we can build this family. It’s 9,460,800 minutes all strung together through some very, very challenging times proving our faith in each other and in love.

We knew we wanted children and we could not have had two more amazing young souls enter our lives. This is not about regrets. No way. Every step along the way our children have made us proud. They make us better people. This family unit is so much more than we thought it might be all those years ago. Better. Bigger. There’s more meaning in each day than we could have envisioned.

Yes, wedding anniversaries are bittersweet. We look back at those young besotted lovebirds and we want to whisper in their ears, “You have no idea what you are getting into. You have no idea how hard what you are doing will be. Enjoy these moments of frivolity. You have the most important work of your lives coming up. You will be tested in situations you never knew you could handle. You are entering one of the most demanding and sometimes bewildering experiences of your lives. You are absolutely clueless. But you can do it. You will be amazed and proud of what together you can accomplish – shedding expectations and forging a bond that might become unrecognizable to you now but which will be stronger than you can imagine. Go forward, sweet lovers, you are strong enough for the new worlds you will discover together. Just hold on tight. You can’t fix what can’t be fixed but your love, this love, is the foundation on which futures depend. You can do it. You will do it. Together.”

 


And as a p.s. – to all those out there who are doing this as single parents or carers, you have my complete and utter respect. I don’t mean for a second to imply that marriage is the only way – there are many ways to walk this journey. In whatever form a home environment/support structure takes, great love is at the root of it all. Love matters most.

 

 

 

 

 

 

 

 

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FASD: Rethinking ‘Learned Helplessness’ & Empowerment

learnedhelplessness

By SB_FASD

“Learned Helplessness” – this phrase was bounced around in a meeting with the school recently. I keep going over and over it in my mind. When I first saw it on a paper, I recoiled. When it was being discussed I felt defensiveness and anger bubbling up inside me. I had to keep looking to my husband to see how he was reacting. As a school governor, he knows how to wade through the lingo. But this one was new to both of us, and it did not sit well.

Here’s why.

There remains a prejudice – even in progressive places, even among the most supportive of people – against the idea of encouraging a person to acknowledge and seek support for tasks that others can manage. A look of horror shadows across someone’s face when we try to explain that FASD is a lifelong condition, that our son will always need scaffolding and support. The defensiveness I feel is that they are questioning me as a parent, thinking that I am ‘babying’ my growing teen, denying his independence, not preparing him for the hard, cruel world.

Oh, how wrong that is.

In seeking to help our son identify when he is overwhelmed, in giving our son the words to describe his need for people to break down their instructions, in providing our son technologies and strategies that allow him to remember and complete multi-step projects, in helping him understand those things that overwhelm him and in explaining why his brain finds certain things quite difficult, we are giving him the very tools he needs for his future independence.

Forcing him to write by hand something he can easily type is not overcoming learned helplessness. Giving him technology to unlock his thoughts is showing him how he can communicate all that is inside of him.

Giving him support to organise himself and what he needs to carry from lesson to lesson is not selling short his abilities, it is removing a needless stress – allowing him to focus on the other more important things rather than using all his mental energy for that purpose.

Helping him get dressed for school in the morning is not over-parenting him, it is creating an environment where he feels less anxiety allowing him to make the major transition of the day with as little stress as possible. (And no, don’t worry, I do not intend to be helping him to get dressed when he is 20.)

Yes, I do understand that water finds the path of least resistance and so do children. Sometimes. I do understand that making things too easy can become a self-fulfilling prophecy. No one is advocating under-estimating the considerable talents of my child, or any child.

In fact, I have sat in meeting room after meeting room in school after school and office after office doing exactly the opposite – showing teachers and professionals that they are the ones underestimating our incredible son’s abilities. Understanding how his brain works, suggesting the supports he needs to overcome the challenges he faces as a result of his brain wiring, this is not making excuses – this is providing insight and explanation for how to help him be all that he can be.

You may balk at the idea that a grown person will need to take motion breaks, to find some way to get deep proprioceptive impact regularly throughout the day to help himself stay self-regulated. You may think that ‘he has to get on in society,’ and that he has to ‘fit in’. That he needs to ‘learn’ to not need these sorts of breaks. But you would be wrong. There are ways as he grows older that he can meet this need without having to crawl into a ball pit. But if there is one available, and if he asks to go to it and is denied, then it is not me making him feel ‘less than’. Together we can find other ways for him to get this needed input as he grows. We have been teaching him since before he could talk to squeeze his fingers slowly, to squeeze my hand when we are in a crowd and I will squeeze it back (our secret signal, we squeeze out the syllables for ‘I love you’ in a way nobody notices). He will learn other ways as he grows older, but the answer is not for him to learn to just sit still. That will never be his answer. We have done star jumps in crowded hospital waiting rooms. Would you rather he sit there in distress until he can no longer handle the stress and have a meltdown? Who cares if this is not the ‘done’ thing. Maybe the world needs more ball pits and star jumps for us all.

This really isn’t about one school report. It’s not directed at any one individual. My strong negative reaction to seeing that phrase there in black and white is the result of a much, much wider frustration.

People out there need to understand that Foetal Alcohol Spectrum Disorders are lifelong. Practice and repetition helps. It is highly probable and desirable that with enough consistency some things that today need significant scaffolding might in a few years’ time be do-able by rote.  That is the goal, the vision. Strategies we practice and discuss time and time again will become second nature. We have already seen this happen, seeds of strategies planted years ago are starting to bloom. Every lesson is being processed inside that amazing and complex brain of his – but we all of us need to measure ‘success’ in a different way, on a different time scale.

And – this is essential – we should not remove those supports once he is doing well.  No,  that is just cruel. That is setting him up for failure. The supports, when they work, need to be there on a daily basis, consistently.  He’ll let us know when and if he can go to the next level.

Too often we get into a pattern of crisis, supports, end of crisis, removal of supports, crisis looms again.  That cycle is because those around him – despite lots of training in other conditions – still fundamentally do not understand FASD. This happens also in homes and other settings. Things start to improve so we lighten up a bit and voila, things unravel again. The supports are not temporary. They are needed permanently.

You would not remove a hearing aid just because the person started to hear better.

In reading definitions of learned helplessness while still chewing (choking?) on the phrase last night, it occurred to me those who think this is happening are getting it backwards.

“Learned helplessness” occurs when a person figures that there is no point trying to avoid or change something negative because efforts to change it have failed in the past.  The danger of our son learning helplessness comes when he asks for a sensory break and is denied.  When he starts to believe there is no point in telling the adults around him he is struggling because they won’t change the environment.  It comes when he gives up trying to find the words to explain why this project, that assignment, that topic or this particular journey is too difficult for him to wrap his head around in the way it is being presented, to hard to endure because of overwhelming sensory input.

People with FASD should not have to learn to ‘grin and bear it’. They should not have to spend all their emotional and cognitive energy trying to contain themselves, to perform one limited task. It should never be about writing one sentence when there are supports available to help them write in paragraphs. What’s the goal? We don’t want a child to use every ounce of their energy trying to remember their PE kit or trying to sit still for the next 30 minutes. We want them to contemplate the cosmos, to study the beauty, colour and rhythms in the world around them. We want them to open their thoughts to the magnificence of this mysterious planet, to learn about great lives and small wonders. We want to hear their voices, really, truly hear the songs their souls are singing. To do that, those of us supporting individuals with FASD need to think very carefully about what we are doing to unlock their potential and worry less about how to tame them to conform.

No, my child is not learning helplessness.

He is becoming empowered.

Just watch this space.

You’ll see.

 

 

Nothing’s ‘Common’ About a Cold in this FASD Household

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Available in audio format:

By SB_FASD

The germs are winning. Yes, I know that you’ve had a cold too. Everyone has. Most have even had it worse than we do. But there is no such thing as a ‘common’ cold in a home with a child with a Foetal Alcohol Spectrum Disorder (FASD) or other sensory issues. Our house becomes a streaming, swirling, hacking swamp of germs – Biohazard Level 4 with no defences and a germ-spreader who could give Typhoid Mary a run for the title. No, cold season is not for the weak-hearted or easily grossed-out.

We all hate the sensation of a runny or a stuffed-up nose. But our guy really, really hates it. He hates it so much he gouges at it until it bleeds. I recently changed a blood-soaked duvet cover. If it’s runny, he can’t wait long enough to find a tissue, he needs to immediately wipe it, and does, on whatever is handy at the moment. Despite years of showing how germs are spread, he simply cannot remember to wash his hands before touching whatever it is that is nearby. If you remind him, he becomes instantly defensive, potentially aggressive. And it’s really not fair. It’s not his fault. So we try not to harp at him while he is ill. Despite practically following him around with the Dettol spray, our house is one big petri dish incubating all kinds of germs.

It’s hard to suppress my own ‘yuck!’ when I see less than ideal habits, but I try, try to remember how hard this is for him, the child who cannot handle certain food textures or smells, to have his own internal sensory system compromised like this. I feel the mamma bear rise in me when I see that look of ‘ew’ on others’ faces when I know how hard my son is struggling even if he might not use the tissue I just offered. And yet I push him to go to school even when he reminds me (apparently remembering some of the lessons) that he will spread germs to others. It’s impossible for him with his challenges with abstract thinking to understand my shifting rules.

Thanks for the reminders, but getting him to swallow those healthy vitamin-C-laden foods that everyone helpfully recommends is simply Not. Going. To. Happen. Food is never an easy topic around here anyway, but when the throat is sore, everything becomes impossible. The child who already doesn’t like to swallow things that need a lot of chewing (except of course sweets), gets it into his head that his body ‘can’t handle’ anything else. He’s not allowed ice cream at the moment due to his cows’ milk protein allergy, so we buy ice lollies to help his throat. Rather than have WWIII around food (especially when ill), we only buy what we are OK with him eating in one go. That might include an entire box of ice lollies, one after the other. Gone. Mainlining that sugar straight into his already wonky system (and no, he won’t eat the ones with added Vitamin C, thanks). I get it that not everyone would allow this. We all make our own red lines.

For a child who already cannot tolerate the way certain fabrics feel on his skin, imagine the discomfort when he has a fever and feels uncomfortable all over but can’t name it. His system needs a certain level of movement and impact to calm itself, so our guy never (or hardly ever unless he is really, really bad) just curls up to watch TV when he is ill. (Though earlier this week, he spent two days in bed, so this ‘cold’ was more than a ‘cold.’)

No. His way of coping is to do flips on the bed. Literally. Or to make slime (though with even less tolerance when things go wonky with the ‘recipe’). Or gets involved in any number of activities that all leave him absolutely frustrated because he has even less reserves to pull on to control those impulses to toss, smash or crunch when it doesn’t go his way. He skirts the room looking for things on shelves, in corners-one of his classic signs of increasing dysregulation. It is very hard to break this concentration or redirect this when it is happening.

When a cold isn’t just a cold and the tummy gets involved, watch out, that is a whole other circle of Dante’s hell.  We’ll just leave that thought out there and move on.

Yes. We walk on eggshells when colds strike.

And of course it becomes an impossible loop because we inevitably get it too. When our heads are pounding and our own throats feel like they have knives in them and we desperately just want to sleep, we have nowhere near the parental patience that we know we need. We take shortcuts with each other, with him, with our older son (who by the way has ME/Chronic Fatigue Syndrome and when he gets a cold it sets him back in a heartbreaking way). We feel even less likely than usual to ask for help.

That’s a long way of saying yesterday was not a good day in our house.

We arguably pushed too hard. We took our guy to a new bouncy play area that was pretty amazing. He was able to act out his dream of being on Total Wipeout. This place had a rotating sweeper thing to jump over. Later, he eventually found a staff member in the dodgeball area that was so impressed by his skills that he let him flip and soar to his heart’s content in a corner.

We had done the mental calculations – letting him get the extra proprioceptive input, let him get his ya-yas out after nearly two weeks of not doing much of anything, let him go to an event with other adopted children in the area where at least these parents were smiling sympathetically and not judging regarding the ever-running-nose versus the fact we knew it might make him overtired.

We miscalculated.

In the first two minutes after the session ended, he was demanding water immediately – not able to wait until we got to the car where we had water. It became imminently clear we had deeply misjudged. Despite having repeatedly checked in with him as he was bouncing and flipping, he was not able to self-assess, to let us know he wasn’t really coping at all, that he was becoming over-stimulated, over-wrought, and physically wiped out.

We used every bit of parental skill to maneuver him home. The good news is there was no meltdown. The bad news is it took several hours of not very stellar interactions (his and ours – including some pretty poor interactions between us as a couple) until any of us could finally relax again. In retrospect, we should have listened to him that morning telling us that his nose was too stuffed up. We should have listened harder to his anxiety about going to a new place. We should not have talked over his concerns. (How many times will it take before we learn this lesson? It’s just hard because sometimes those anxieties are barriers that stop him from trying the ‘new’. So, yes, we do push. There is no instruction book to tell us when to do that and when not to. It’s hard.)

He is still sleeping as I write. I heard his music on at 3.00 am last night. He had a difficult night, my guess is that’s not unrelated. The night before he told me he had a dream about Voldemort. I should have known that was a sign. Instead of writing this, I should be disinfecting, but my own head isn’t great. My husband whose cough has become worse crawled back into bed. Our eldest whose nights and days had become inverted with his cold seems to be sleeping. I am taking this rare moment of mummy time to sort out why I feel so drained when – after all – it’s ‘just a cold.’

It helps me to remember that no, a cold in our house is not ‘common’. And while I know you too have felt rotten recently and I am sorry for that, unless you are close to someone who struggles with all these other sensory and executive functioning issues, you can’t really understand what I am saying. And for that I am glad. Just please, don’t think I am exaggerating. Don’t tell me ‘everyone has it.’ Just let me whine a bit. I will love you forever.

Now, please pardon me now while I attempt to fumigate. Don’t choke on the Dettol.
 

 

 

 

 

 

 

 

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FASD – Not All News is Good News: Speculation about the Florida Shooter is Divisive

Blog_NewsBy SB_FASD

Far from the media spotlight, in Facebook groups and living rooms around the world, people with Foetal Alcohol Spectrum Disorders and those who support them are debating a news report that speculated as to whether or not the Florida shooter might have undiagnosed FASD. A major news outlet used this raw moment to highlight the too-often overlooked effects of prenatal exposure to alcohol. Better understanding FASD is an important topic. Earlier this month a US study showed that more people have brain-based disabilities due to FASD than have autism. Days ago an Australian study showed that people with FASD are a disproportionate segment of the prison population.

But I have never subscribed to the idea that ‘all media is good media.’ Some articles play straight into the anti-disability prejudice and stigma that exists. Our colleagues in the autism community know this well and are feeling this backlash once again, since reports are also circulating that the shooter had an autism diagnosis. Linking any condition with violent acts in this way ignores society’s failures which are by far the more salient issue in such cases. It’s easier to identify the ‘other’ – someone not like us – as being ‘flawed’ and therefore prone to such heinous acts. Whatever condition this shooter may or may not have had is not the reason why he did what he did.

An adult with FASD summed up why it is harmful to link a condition so quickly to such an emotive news event: “I don’t want this to be the general public’s mental association to FASD. ‘Oh, you have FASD? Uh-wait; isn’t that what they said that school shooter in Florida had?’ YES because from now on NOT ONLY will I be seen as ‘stupid’ or ‘retarded’ now I get to be seen as having the potential to kill and EVERYTIME I get upset about ANYTHING I will be under heavy scrutiny because ‘They said this this and this about FASD.’  I don’t understand HOW this is REMOTELY a good thing! It makes me afraid to be open about it because I don’t want to frighten people; what people fear-they destroy.”

Myles Himmelreich wrote, “This is leading to a misunderstanding, judgement and incorrect information about FASD. I am a motivational speaker, FASD consultant and FASD trainer and as such I shake my head and say ‘we still have work ahead of us’ this shows a blanket statement and will continue to misguide people to believe individuals with FASD will automatically be violent, NOT TRUE. Oh and I’m also an individual with FASD and as such I say ‘please see me, know me, support me and join me in truly understand the struggles but also the success I face every day.’”

All around the world people with FASD live lives of courage and accomplish amazing things. There are many examples of FASD role models. Sadly, the media rarely takes the time to acknowledge the good work they and others like them are doing. Instead it wakes up when it can sensationalise a story. This comes at great cost.

The US National Organisation on Fetal Alcohol Syndrome issued a statement that said in part: “We see no good reason for FASD to be discussed at all in the context of this shooting. There is no evidence of any connection between FASD and violent behavior. In fact, individuals living with FASD are disproportionally likely to be victims of violent crime, not perpetrators.”

The Minnesota Organisation on Fetal Alcohol Syndrome also responded: “Many people with an FASD and their families find it upsetting, stigmatizing, and dehumanizing to read media stories linking FASD and violence. It’s worth noting that countries with similar, and even higher rates, of FASD do not have the same issues with mass shootings that we have in the United States. This strongly suggests FASD is not the issue.”
People with FASD can have more than 400 related conditions due to damage done to developing systems while in utero and secondary issues can kick in if their primary needs are unmet. It’s a complicated mix. While FASD does not equal violence, we also should not ignore the fact that some with FASD need help with channelling aggressive and impulsive behaviours that can sometimes become quite consuming.

Savanna Pietrantonio, an adult with FASD who co-chairs one of the longest-serving support groups in Canada and who helps run an international FASD online support group Flying With Broken Wings, thinks it’s important that we use this moment for developing a deeper understanding of FASD and the powerful impact that proper supports can have on someone’s life. She said, “We’ve been the less and the least and the left out for too long. It’s too bad not everyone and even most people don’t have the all the information from which to make this event into a meaningful conversation. We can overcome and cope with the trauma involved with having brain damage due to FASD when we have support. It makes all the difference with acceptance and unconditional love and someone who isn’t afraid of our brain or mistakes!”

She and others in Ontario are pushing Bill 191 to amend the Education Act to “promote awareness and understanding” of FASD and “best practices” to meet their needs to reinforce the tremendous responsibility schools have to provide awareness, understanding and support to meet these needs, rather than punishing, suspending or excluding troubled students. As Mark Courtepatte, co-chair of the Hamilton support group said, “For people with neurological disabilities, their actions are communication. Whatever his condition may be, the Florida shooter’s actions communicated that he was overwhelmed, his brain was not able to comprehend or deal with his environment of continuous non-support and not being understood. He ‘snapped.’” He noted that discussion about the culpability of Cruz’s school is missing from the media.

Raewyn Mutch, one of the researchers from the Australian study, is quoted as saying, “The longer you leave someone unrecognised with a neurocognitive impairment, the more frequently they experience negative repercussions from not having their impairment recognised…They experience more often punitive responses to their behaviours rather than reflective responses based on the fact that you understand they have a cognitive brain impairment.” In other words, it matters greatly that we recognise and address the needs of people with FASD.

FASD is as prevalent here in the UK as it is in other countries, if not more so due to having one of the highest rates of drinking alcohol during pregnancy. We have seen recent UK reports about many adoptive families experiencing child-on-parent violence. These stats may include undiagnosed cases of FASD. (In the aforementioned US study only 2 of the 222 cases of FASD found were previously diagnosed.)

The good news is research shows that using known strategies to support those with FASD can create brighter futures. This positive approach is the basis of the FASD UK Alliance which runs an online support group for more than 1,600 families. NOFAS-UK promotes FASD Wellbeing by working with those with FASD, families, policy makers and practitioners.

The bad news is there are parts of the UK where it is not possible to get a diagnosis for those on the FASD spectrum, where people are denied support by the NHS and schools despite the fact they have brain damage. If the person doesn’t have the dignity of a diagnosis, that all-important insight into the ‘why-s’ of their struggles, tools and strategies are not put in place: the support, the assessments, the Education and Health Care Plans they deserve, the benefits that are increasingly denied to those who need them most.

Here in the UK adults with FASD are seeking to create change. As Lee Harvey-Heath, Chair of the FASD Advisory Committee said on the launch of the committee last year, “It is vital that those affected by FASD have a voice. Individuals with FASD need to be heard in order to gain the support that they so desperately need and deserve.  My own undiagnosed FASD took me to a place that many neurotypical adults don’t come back from. That is what I want to prevent happening to anyone else affected by prenatal exposure to alcohol.”

How to prevent this from happening is the task for us all. It takes political will, prioritising a vulnerable and too-often overlooked segment of our society, and compassion not sensationalism. We must not stigmatise the very same people we are trying to help. We have to hear their voices too. We have to seek change together.

This is personal. I am American, though I have lived in the UK for nearly 12 years. I am mum to a teen with FASD. The reason why I would not move back to the USA has nothing to do with the fact that there are people there with FASD, just as I would not leave England because there are people here who have FASD. I would not move our family back to the USA because of the guns, the increasingly militarised and polarised society, the failing health system, the lack of safety nets for the vulnerable, the fact the sitting US president openly mocked disabled people. I most certainly do not fear people with FASD, nor should you. Fear – if you must – prejudice, stigma, and inaction. Those are the killers. Fear another generation bearing the weight of this hidden epidemic because our political leaders didn’t think we cared enough to make it a priority.