The Lonely Parent

Blog Alone
By SB_FASD

I have been trying to suppress my pity party for days now. It’s not anything dramatic. I almost feel a fraud. I’m not crying into my cup thinking “poor me”. It’s just this emptiness I have been feeling as the parent who is more times than not the one left at home.

When I look out there at the lives that people I love are leading, I realise I am the one who has dropped off chat lists, I am the one who is assumed to be unable to go somewhere. I am the one staring at the TV or computer screen again on a Friday night while our youngest is in his bedroom doing his multi-hour wind-down before he manages sleep. I am by default the adult who doesn’t go to the show, the drinks, the meal, the shopping excursion, the movie, the trip, the volunteer activity, the committee, the family event.

It’s especially obvious at night. Our son’s FASD (and the trailing off of his daytime ADHD medications) makes sleep a challenge and while our evenings are about a zillion times better than they used to be, they are still a bit of a minefield. We haven’t had a major blow up thankfully in a very long time, but things can still tip into a negative loop fairly quickly. It means I can never really ‘relax’ in these evenings. I have learned it’s best to back off, let him set his own environment for the evening, to not stress if he hasn’t eaten his dinner, to provide access to generous healthy-ish or at least calorific snacks and pretty much just leave him to it. This is nowhere near as ‘hands-on’ and demanding as it used to be during years of very, very trying night times.

I can do more to make this evening time to myself meaningful. Of course, I can. I could be doing lots of things – crafts, reading, Skyping. Cleaning would be a service to humanity around here. But so often I am just so deeply tired after giving my all to the day and an intense job that the blank stare at a mindless show is about all I can muster. And if I do anything too out of the ordinary that then can also escalate things. It’s best to be quiet and vigilant.

The reality is I find myself feeling unfit for socialising so often anyway. On the rare times I am able to go out, I am not able to be the person I want to be. I feel the heaviness that I carry with me and I see it reflected back in the faces of those I speak with. Meanwhile, I see family and friends with their inside jokes and giggles and I miss the younger carefree me who would be out most nights just hanging out and having fun. I can’t tell you the last time I went out and just laughed.

I try not to wallow in a negative mindset. The reason I finally gave myself permission to write this post is that I know I am not alone in feeling like this. It’s not comfortable to talk about personal feelings, as we are all supposed to put on that smiley face and not admit that there are times when this life isn’t great. Maybe by my opening up about feeling lonely and left behind, others will too.

Compared to many raising children with FASD who lack any sort of network at all and who are facing crisis situations that thankfully we are not experiencing at the moment, I know I have zero right to feel down. At the end of the day I do have a lovely network of family and friends who are here for us if we need them. I have a partner who is here (and I know he is tired too).

I am not really ‘alone’ even though I can feel lonely.

If I sent out the bat signal right now, there would be people at our door and I am so deeply thankful for them. I am not criticising them. Not at all. People are there if I reach out.

What I am talking about is something more subtle. This withdrawal from ‘normal’ socialising has been building over more than a decade. It’s maybe happening a bit more now that our son is older and has retreated more into himself. It’s less easy to get him out to social activities.

Maybe I am only realising it because things around here are easing and I have the mental space to even think about it. I am becoming acutely aware of the conversations of a more diverse, rounded and full life that happen around and behind me even when I am out – literally as happened at a café just this week when I felt lost in a sea of chatty conversation and I snapped. (We do have a regular Friday morning coffee with family and friends that is the main social lifeline in my world, but often I can’t make it due to work). There was this buzz of ‘things happening’ and I felt so out of step with it all. The one Friday night I did get out recently, I felt the same way.

The years and years of ‘connections’ have deepened between others around me, and as each year passes I am that much more ‘disconnected’.  Facebook, with all its warts, has become my place to have a giggle,.

I love my children and my husband and my family and my friends. I have a blessed life. I especially feel bad writing about this because I know it’s even harder for our son with FASD who has trouble socialising for a range of other reasons.

I am not complaining. I am trying to explain.

This sidelining happened and deepened over a long period. That is the realisation that has surprised me lately, hit me hard. It’s like everyone out there is on a faster highway and I am over here on the gravelly two-lane road that runs alongside it, going in the same direction but watching from a different viewpoint, in a time warp. And to be fair, our lane is slower, bumpier. While others’ kids are careening toward their future, we are parenting as for a much, much younger child. Those different speeds have become more apparent as time goes on. There’s a reason for that, teens with FASD diverge more from their peers than when they were younger.

So, yes. The reality is that my reality is different. Our lives are intensely focused on the needs of a sweet, loving young person with FASD who is growing into a young adult on his own time scale, in his own way. There are immediacies and worries and concerns that come with that which are very real. When I am out with people, it feels like if I am true to my life and experiences I suddenly bring this intensity into a room and the atmosphere goes heavy. I feel that character in the Peanuts, Pig Pen, who always has a cloud of dust around him, over him. People love and welcome Pig Pen – he’s part of the cast of characters – but they keep him at a slight distance lest that dust settle on them too. They are more relaxed when he is not there.

I guess what I am trying to say is this: life as a parent/caregiver of someone with a neurodevelopmental disability like FASD can be isolating in ways big and small and that has a profound but sometimes subtle compounding effect on people over time. It’s okay to acknowledge that without feeling like you are moaning (I’m nearly through with this blog post and still trying to convince myself of this).

Just because a family affected by FASD may seem to be in a ‘good’ place, doesn’t mean that it’s going smoothly or easily. It doesn’t mean the pressure is off. They are probably always worried a bit about what’s around that bend. They still need you.

If you are in the wider network of someone with FASD and their parents/carers, send a little hello text. You probably have no idea just how welcome that simple act would be.

The Slime Whisperer

BLog Slime Whisperer who has #FASDBy SB_FASD

I remember one summer we had signed our son up for tennis. He was tiny but remarkably good at it. We had arrived a bit early before the end of one session. Watching through the fence, my heart sank into my stomach. We saw our son wandering around the edge of the court, head down, looking for something, anything – alone. None of the instructors seemed to notice. This was not ‘fun’. This was not what we had hoped for when we enrolled him. He said it was ‘boring’. This was long before we understood that was his go-to phrase for situations when he cannot access whatever it is that is going on, when he doesn’t understand what he should be doing and when the cognitive challenges are too much. We took him out of that programme, one of a whole string of summer programmes that didn’t quite fit.

Flash forward to last weekend. We were at the Brain Base, an FASD-specific summer event (OK, one I organised with an awesome team of people) – a full on multi-sensory programme designed for those with FASD. It was time for the slime lab – an idea our son inspired and led last year at the first ever of these “Brain Bases”. But this time something was holding him back. I couldn’t figure out what. He asked me if I would please tell everyone the instructions. While I did that, I saw out of the corner of my eye that he had taken himself off to the side. I felt that heart-sinking feeling again. Even here, surrounded by people who ‘get’ FASD, he was separating himself. The familiar sadness began eating at me even as I was trying to lead this session.

And then I looked closer. Listened harder. Other kids were having trouble with the mixture. He was making his work. The pressures as event organiser/mum were weighing down hard on me: I was fearing a potential disaster if no kids were able to bring home slime as promised and I was worried my son might be on edge and possibly spiralling. I was not entirely sure how I would handle that combination.

I went over to him quietly. He blurted out, “You don’t have the water!” I explained we had pre-mixed the water with borax* (the fairy dust that makes this slime recipe possible). “There is water in there,” I said, over-riding him, not listening as I too often don’t. He was having trouble telling me. He was getting a little upset. “You need the water!” Then I looked more closely at what he was doing. He had been experimenting off on the side. Hands on. He had added some extra warm water to his mixture and was making it work. He had been testing it out, away from the clamour, before telling me.

I realised my mistake. When we were planning and getting the supplies together for the slime session I had verbally told my son what supplies we had and asked if it was everything we needed. It wasn’t until he was there and could see the supplies and was using the supplies that he could identify very quickly what was missing – extra bottles of non-boraxed water. If I had shown him these supplies sooner and not relied on verbal reasoning only, we would have avoided the glitch.

Now that we understood the problem and why everyone only had at that point a gooey mess, we adults quickly supplied extra warm water on all the tables and then I watched our son.

This, this was his moment.

He was the Slime Whisperer. The Slime Doctor. He was going around the tables, helping people get their slime to the right consistency. He had parents, carers and kids lining up to get his help. People were calling out his name. It was chaotic but he stayed cool. He wasn’t gregarious or arrogant, he was determined. His head was down, all focus on the slime and what each mixture needed. It was instinctive and quick. He has, after all, been perfecting this over many years. He knew what I did not.

My heart stopped its descent into my stomach. It went right back to its proper place and I was full of awe. In that moment, the concerned organiser disappeared and the proud mum took over. This journey had taken a long time from a floundering, ostracised kid no one noticed to young leader at the centre of something magic. This moment had been a long time coming.

And of course, it’s not just about slime.

It’s about understanding. I have written previously about how our son used to get into all of the shampoos and perfumes, he’d mix things and we’d get angry. Finally, we gave him his own ‘slime lab’ with items he could use and which we would re-stock from a pound shop. He has spent days, weeks, years getting this right. He has finally in a very physical way learned how to balance the different mixtures. He has learned by doing, finding his own creative approach to a scientific challenge. His natural determination and ability to fixate has worked to his advantage here. It reminds me of a piece by R.J. Formanek, Getting Burned with FASD, where he explains how as a young person with FASD he literally had to experience something before he understood it.

No, it’s not just about slime. It’s also about finding tools for success. We have over time learned that our son needs this sort of input to help him calm. He now will bring some homemade slime when we go out. Or he also likes various putty – which is less messy and a deeper kind of input. Sometimes it’s just Blu-Tak. We had the best car journeys we have ever had getting to and from this Brain Base (four-plus hours each way), because he had a bag full of tools like this that met his sensory needs, things he chose to help him. That’s the key – these were things he wanted, not what I thought he should have. (And we listened to him, didn’t force him to go into the convenience areas or to eat, we let him ‘be’ in the ways he needed to be.)

It’s also about normalising what too often are seen as unusual behaviours. So, yes, a child making a huge mess with shampoos and powders and washing up liquid can be seen as ‘not listening’ and ‘stubborn’ – some might even call it ‘naughty’.  But when we look harder at what they are showing us in those moments we can see the need is for greater sensory input, their system is screaming out for tactile and sometimes deep sensory input.

This is a ‘thing’ – if you know a child searching like this then get an assessment from an occupational therapist trained in sensory integration issues. They can give you what is called a ‘sensory diet.’ Our son has always had a need for deep proprioceptive input – the deep muscle sensations you get from jumping or bouncing or deep massages. It helps his system regulate and it ‘grounds’ him. Pushing the wall, wheelbarrow races, pillow sandwiches, burrito blankets, these are all techniques that help him.

Some of my favourite moments of this past weekend were when adults around him started to use the putty too. Sitting in a noisy restaurant is hard for our guy, especially after a long day. I have a photo of him with one of the leaders of the Brain Base, they were both playing with putty while watching a little YouTube clip of something or other. My mother would have been appalled as this is not typical restaurant etiquette – yes, I still have those thoughts rise up in me. But this wonderful adult was making it all right. We have another photo from the car ride home, where he and his auntie are both playing with putty in the car, discussing its feel with the seriousness it deserves. This whole weekend was about getting the adults to join in with their little ones, normalising the strategies, practicing them side-by-side with their kids. It works!

And in our little family unit, we did not had one meltdown or even seriously wobbly moment the entire trip. In my head at this point the proper response would be for the clouds to open with a hallelujah moment. It’s been a long, long decade-plus string of holidays that did not go so smoothly. In this we are not alone. I have been reading in support groups how people are struggling this summer to try to find ways for their families to have time away without the world crashing down. I remember those days. We have been there. Oh yes, we have.

So no, this post isn’t about slime. It’s about listening to our young ones, being led by them and their interests. It’s about finding that thing, whatever it is, that they enjoy (even if it is not something we enjoy) and finding ways to build on that to help them find some self-esteem, maybe even help them develop leadership skills, in the process helping them to know they can help others. It’s about finding tools that work to break down their anxieties and isolation. And yes, it’s about building those spaces if they don’t exist.

If it had been up to me the slime lab would have been a sticky, gooey washout. Instead, it got the highest rating of all the sessions at the Brain Base. He made that happen. I wish you could have seen the smile when I told him that.
_________

*Please note: Borax needs to be used with parental supervision. It can be harmful, including if it comes into direct contact with skin or is ingested. This session used only a pre-diluted weak solution and all involved signed waivers. Please read up and be safe.

Be Angry, But Not at Those with FASD

Blog_Angry

By SB_FASD

This is for the parents, carers, guardians, extended families and friends out there who are faced with some very long days as they struggle to support a loved one with a neurodevelopmental disability. It’s for those who bear the brunt of the very hardest realities of the way that underlying atypical brain-wiring in a child can affect daily life. Specifically, this is for those who love and care for people with Foetal Alcohol Spectrum Disorders. In the UK as many as 6% or more may be on this spectrum and yet there is simply not (yet) awareness and support for those who are coping day by day with the social, emotional, sensory, cognitive and physical challenges that can come with this condition.

So very many families are in distress, misunderstood, sometimes judged unfairly, struggling in towns and cities for some sort of joy in a life that can be consuming with so many ups and downs and dangers and uncertainties, especially if the right diagnoses and support aren’t in place.

There are limits to what parents and carers under intense pressure can endure. We are human. Helplines and support groups are full of pleas for help. Collectively, our families and homes are under siege. While there are signs things may be changing at a high policy level, on the ground there still is no visible way forward for far too many. The pain and the heartache in this community are palpable. It run deeps. I get it. I do. I have felt it. I have lived it.

But then I see something that bubbles up time and again and it really sucks the wind out of me. I see parents and carers directing this absolutely understandable angst back at their children. I see the cliff edge where compassion stops. Parents and carers react when their own fight/flight instincts kick in. Sometimes it goes to unhealthy places. In recent days I have seen parents call their children horrific terms I won’t repeat here. I cringe knowing that adults with FASD will have seen those comments too.

I weep inside because those young people in those families will be absorbing all that negativity. It will make it harder for them to self-regulate. It will make it harder for them to learn coping strategies. It will in fact deepen the very behaviours that are fuelling frustrations, behaviours that are due to the underlying hidden disability, not because the person with FASD is being deliberately naughty. As the young person ages and enters adulthood the issues compound and sometimes the gap can widen at home.

So I say to a parent or carer who is at wit’s end, if you’re going to be angry…

…be angry at a system that refuses to see the organic brain damage caused by exposure to alcohol in pregnancy. Be angry that in most places in the UK it’s nearly impossible or can take years to get diagnosed and assessed for a Foetal Alcohol Spectrum Disorder. Be angry at professionals who ignore, belittle or patronise you for fighting for your child’s needs. For professionals who deny this spectrum exists. For practitioners who in their arrogance insist on using therapies and behavioural approaches that do not work and can cause harm to someone with the cognitive processing issues of FASD. Be angry at national, regional and local policy makers who refuse to fund and support people with disabilities and who do not even have FASD on their radar because those definitions of disabilities too often exclude people with FASD. Be angry if someone knows a child was exposed to alcohol in the womb and doesn’t bring that information forward. Be angry when this is minimised to avoid paying for support and services. Be angry when people deny the risks of drinking alcohol in pregnancy and try to confuse public messaging on this. Be angry because an adult with FASD is turned away from benefits. Be angry because a request for an Education, Health and Care Plan assessment is denied. Be angry because a student with FASD was excluded or off-rolled rather than the school trying to support their special educational needs. Be angry at the pub culture in this society and the pressures on pregnant women who are too often confused by inconsistent or conflicting information and who might drink for many reasons, but not to harm a developing child. Be angry when a birth mother is denied the help she is seeking. Or when stigma suffocates progress. Be angry when another young person with FASD ends up on the streets or in prison or dies too young.

Yes, be angry. I get it. I really do. Be so angry you force the system to change. Use that anger to fight for diagnosis, services, benefits, a place at the table.

But…please, please don’t be angry at the person with FASD who is in your life. Don’t be angry at a kid who can’t do what you asked. Who is still not dressed and ready to go. Who threw something. Hard. And maybe even broke it. Don’t be angry if you didn’t get a birthday card. Or if that special treat was eaten. If you were ignored yet again. If the wall was drawn on or the paint spilled. Don’t be angry if you can’t go to a family birthday or if you have been sleepless for too long. Or if you just got hit by fists or maybe words that might even hurt more. If pants were soiled. If new shoes destroyed. If your holiday dreams didn’t pan out because someone got overwhelmed in a new place. If you spend sleepless hours each night because a child can’t settle. If you yet again bear the brunt of yet another impossible day at school. If your teen or adult lacks the ability to handle situations you think they should. Don’t reduce all of that down to anger.

Learn the nuances of those feelings. Train yourself to control those surges. (That is after all what you are asking your child to do. If you can’t, how will they? Where will they learn to do this?)

There’s a whole dictionary of words that can better explain your emotions. You may be frustrated or exhausted or discouraged or afraid. You may be disillusioned or uncertain or overwhelmed or triggered. You might be fearing a never-ending repetition of moments such as these. Looking into that future can grip your guts and bring you to your knees. For all of the reasons above and more you have a right to be angry – but not at that vulnerable person who depends on you. It’s not them against you. You are on the same side. The battle is you together against the system that must yield, that will yield.  You have to form an unbreakable alliance, even if your loved one isn’t always able to hold up their side of that due to whatever additional traumas and attachment issues they may have, even if addictions and secondary mental health challenges make this hard. Your commitment must be so strong that even in the midst of all that can happen, your loved one knows you are present and un-losable, even when you are a tired and worn out and agitated and upset. Even if outside help, involvement of authorities or alternative living arrangements are needed. Especially then.

Because they will know deep inside that love is solid. They won’t internalise that you are angry at them. They will come to know you are instead angry at a system that doesn’t bend for their needs, doesn’t see how hard they try, puts up walls where there should be pathways and steps to help them get to where they have a right to go. And by helping them understand the nuances of your own feelings and by showing them that you understand some of their most confusing actions are due to how their brain works, you will be helping them gain emotional literacy. By redirecting and renaming that ‘anger,’ you will be opening doors for your child’s future rather than forcing them further into themselves. These early lessons will either teach them that adults are always mad at them and there is no way to explain their needs to ‘power’, fuelling a negative spiral, or they will learn that they can trust and engage with authority figures, even when the words and connections are at first hard to find.

They will gain experience needed to become self-advocates.

There are known strategies that can help individuals with FASD learn and grow using their many strengths. People with FASD can and do have positive lives. They can and do acquire individualised coping mechanisms and strategies. They can and do contribute to society in many ways … if they get the right start and support. Just knowing and understanding they have FASD can improve their chances. A stable living environment is also among the most important protective factors as is positive self-esteem.

So, please, please don’t be angry at your children. Be angry at the system but love and celebrate your kids in all their complexity.

If you don’t, who will?

Every child deserves unconditional love. Every. Single. Child. And a person born with a lifelong and incurable neurodevelopmental disability surely has a right to compassion in their own home. Every. Single. Day. Every moment. Throughout their lives. Even when it’s difficult. They need you.

It’s not easy, but you can do this. Just start somewhere. Find a positive and hold onto it. No one is perfect. Don’t beat yourself up over wobbles. We all have them.

Just remember – kids with FASD are trying. And how you read that matters.

 


P.S. – You are not alone.

Help is available via online and local support groups. Google for help near you. Some links are available here. Many areas if they do not have FASD-specific groups have support for those with disabilities and their families. Reach out. Call your GP if you believe you might be depressed or in need of help for yourself.

In the UK, the FASD UK Facebook Support Group involves more than 2,200 families.

When Going for a Walk is a Radical Act

BLog_walk

By SB_FASD

Stop presses!

Breaking news!

I went for a walk today.

Not a going-to-buy-slime-ingredients walk.

Not a this-dog-is-climbing-the-walls-and-needs-to-get-out walk.

Not a going-to-catch-the-train-for-work walk.

No, this was an honest-to-goodness walk. Alone. Just for me.

They talk about muscle memory. My body remembers. I once ran hard and smoothly over cross-country courses, around the lines on painted tracks, on beaches and up and down steep hills. I was, once upon a long time ago, a runner. When I stopped running, I used to go for intense walks, every morning at a fast pace, before I even had a coffee.

I was driven, in part, by the horrible illnesses my dad faced through those years. Heart attacks. Surgeries. Diabetes. Amputation. Strokes. Feeding tubes. Early death. Ironically, the closer I get to his age of death, the more lax I have become about my own health.

I can talk a good talk about the need for parental wellbeing when raising a child with FASD. I did so in front of hundreds of people over the past two weeks. Hypocrite.

So today, today rather than losing myself in emails or burrowing deeper into the pillows, rather than finishing that steaming cup of tea I had prepared, there I was tying my laces, thinking how nice it would be to wear out, once again after way too long, a pair of running shoes.

I went at my pace. Realising all the while what a luxury it is. I saw the texture of centuries-old bricks. The sun peeking over rooftops. The vibrant colours of spring flowers in gardens across this gentle town. I even saw the milkman. Such a cliché! But I did.

I felt my own heartbeat. I was sweating. My muscles remembered when this was easier, faster. That old determination to not stop until the finish line rose up in me, even as I contemplated the poetic beauty of living up an incline so that returning home is always an uphill battle that can, if I don’t pace myself, leave me breathless even before I arrive to whatever might be waiting there for me.

I stood a few moments, breathing deeply, slowing my heartbeat. Just standing on my front drive, looking at the overgrown garden, thinking how rare it is for me just to be out here like this. Quietly looking. Usually I throw back my shoulders and dive in.

But this morning there was no rush. While the dog looked at me accusingly, the rest of the house was still asleep.

It flashed through my mind that yes, I could do this every day. But I don’t. Maybe I will now. Or maybe I won’t. Somewhere in the last couple of decades my body started owning me and not the other way around. I don’t know if my will can reclaim this wreck, but maybe, just maybe I will try.

So, why is all of this in a blog about raising a child with FASD?

Because I noticed yesterday how hard it was for me to bend over the bath to help brush out his tangled hair. Okay, it was quite tangled and it took a long time, but still, I felt stiff. I felt old. It was hard for me the last time I changed the sheets on his bed, the mattress is on the floor. I was sore getting up after I spent 30 minutes the other day literally scraping slime off his carpet with a knife and hot water. He wanted a foot rub two days ago after getting thoroughly wound up after a visit to the doctor about a rash on his arms, chest and back that needs medicated cream. I was too tired after a day in London and found an excuse not to do a proper foot massage like I would normally have.

I can’t grow that old yet. There is a great deal of work to be done before I am ready to step out of this picture. Our little one still needs hands-on active parenting. And I need to be able to do that for some decades more yet. So no, my walk was not simply selfish.

But equally, my every move cannot be about the three males in my world. And I really do feel sometimes like I have lost a bit of me.

I know I am not the only mother to feel this way. I know I am not the only 50-something parent to feel this way. I am not having a midlife crisis. I just simply went for a walk this morning. And for me, for however it is that I got to this ridiculous place, that was a radical act.

And yes, I am pretty sure I am going to pay for this. I am ready for my muscles to ache a bit in their own rebellion. Those muscles do have memory and they are already starting to remind me that it was not long ago I could not rely on my left side following some odd neurological symptoms. My leg had become so weak I would not have been able to walk this far back then. My muscles are reminding me that my back, neck and shoulder used to be so locked up I had trouble just sitting in meetings, that I needed injections and physical therapy to help release the movement. Yes, my muscles are a bit surprised at this morning’s turn of events.

I have come far as this whole family has been climbing out a dark hole we had been falling into just a few years ago. We weren’t doing so well not that long ago.

This blog is called ‘FASD Learning with Hope’ for a reason.

I believe with every ounce of my being that holding onto hope in the dark times is the only way forward. I have had the chance over the past couple of weeks to look into the eyes of some people who are still in those darker days. It makes my heart ache for them. My muscles remember those days too. How tense my whole body would become, not knowing if I was likely to get hit or kicked or spat at when simply walking into a room. My body remembers the high alert, rapid heartbeat, the cascade of stress hormones of my own fight or flight instincts kicking in as hinges were broken on doors, holes smashed through, CDs hurled with force enough to shatter them.

But it also remembers the warmth of a tired and weary body relaxing into mine. Even as a toddler, I remember the way it felt when his out of control, flailing, screaming, eye-gouging distress would finally release and he would lean into me for the comfort his little self didn’t know how to find on his own. A little toddler, denied those mummy cuddles for the first 16 months of his life. Oh yes, my muscles remember that feeling of protectiveness of that little lost toddler, that worn out child home from a confusing day at primary school, the overwhelmed pre-teen at wits’ end after another impossible day at mainstream secondary school, and now our more stable teen, who still leans into mum for a quick hug of reassurance when he knows he has been teetering at the edge of dysregulation.

Motherhood is a physical state as much as a mental state. I had not been prepared for that with our first child. I was independent, in control of my own body. I pushed my body to excel. To run 10 miles just for fun. Or to meet some random finish line I had in my head. I welcomed the hypnotic rhythm of my feet pounding the pavement, arms swaying easily with the motion. I ran because I was part of a team but only dependent on and responsible for my own control of my own body. But as a mum, even when still pregnant, I remember thinking how my personal space has now been invaded, taken over. It was a shock that it was such a physical thing to hold an infant, a clinging toddler day after day after day after day. You physically feel their absence when you are away from them.

It’s how it’s meant to be. And yes, my muscles remember that too.

But even still.

Today I went for a walk just for me. And even if I don’t do it again for another decade, I did it today and that claiming of ‘me’ time was hard fought for in my own head. (No one has stopped me from doing this previously.)

So, for today, for this moment, I will claim it as a success. And I encourage everyone out there to find a few moments to reconnect with yourselves. Go for a walk or watch the steam over your cuppa. Whatever it is, wherever you are, claim a little sliver of this day just for you and remember to let your muscles remember, within you there is strength.

——-
The Huffington Post UK published a shortened version of this post on 27 May 2019, “For A Special Needs Mum, Even A Walk Can Be A Radical Act Of Self-Care

 

 

 

Where’s Our Empathy for Those with FASD?

Blog Empathy

By SB_FASD

Sometimes I despair at the lack of empathy in this world. We seem to have a collective inability to imagine ourselves in someone else’s shoes. This week I read about a school that think’s it’s okay to put a vest on a child in the playground so everyone knows he has autism. A five-year old autistic boy had to leave a showing of Dumbo because he got excited and jumped when Dumbo flew. In that case, another mum made a fuss and reportedly said she didn’t “particularly care” that the child is autistic and said he should be kept at home if he can’t sit still. Never mind the whole point of Dumbo is accepting those who are different than ‘the norm.’

Other disabilities aren’t even on society’s radar. I am mum to a child with a Foetal Alcohol Spectrum Disorder (FASD). Someone exposed to alcohol in the womb can have a range of brain-based challenges. The condition is little-known, isolating and affects each individual, each family differently.

Parents vent in FASD support groups about how their kids are always grumpy and never listen. They open up about destruction, rudeness, out of control scenes. Some days these groups are full of parents and carers describing in many different ways how, from their perspective, the person with FASD takes away the joy in their lives. It makes me sad. I imagine how these posts must impact those with FASD who read them.

I empathise with other parents and carers even if I don’t always agree with how they phrase things. We all need to let our hair down and scream sometimes. It’s important to do it where others understand why you feel the way you do. I have even felt this way at times myself, before I understood my son lives with underlying organic brain damage that happened to him before he took his first breath.

I remember one day, looking down at him when he was mid-tantrum. A child on the stairs, screaming, throwing, spitting. In my frustration I shouted, “Why are you doing this?” (I thought he was doing this to me.) He shouted back at me, “I don’t know Mummy!” That moment hung there, frozen in time for me forever. I saw deep into his eyes, where his utter distress was laid bare. He’d probably said this same thing a thousand times before, but that day, that one day I stopped and I saw. I listened. I accepted this was his truth.

None of us knew at the time that this was not a ‘tantrum’ but a ‘meltdown.’ His brain could not handle the input it was receiving. There’s a meme, “Kids with FASD are trying.” It says, “How you read that statement matters.” I have come to understand just how hard my little one tries. I know now, as another meme says, that he’s not giving me a hard time, he’s having a hard time.

But understanding doesn’t automatically bring empathy.

To tap into empathy, we have to try to think of situations we have experienced that might be similar, to remember those moments when we felt out of control, overwhelmed, confused.

Every single one of us has at some time or other felt that type of distress, anxiety and fear – maybe made worse by being hungry or tired or sore in some part of our body or soul. We probably were on a short fuse and most certainly not at our finest. How did we want others around us to act?

One time I was travelling in Japan. I ended up with the wrong ticket for a train. I got stuck at a barrier gate. No one who worked there spoke English. I don’t know Japanese. I couldn’t read the signs. I couldn’t see where I should go. I wasn’t sure when the next train was. I had become separated from my group. One other person who was going to the same meeting, someone much senior to me, stopped on the other side of the barrier and simply waited there for me. We hadn’t been travelling together. He was likely to miss the train. But he saw my distress. He just waited. I cannot tell you how his presence helped me that day. I think of it often now when I see my son becoming dysregulated, when the world overwhelms him and he starts to spiral. I try to stand there for him, with him, even if I can’t always fix the moment – just like that wonderful man did that day for me somewhere between Tokyo and Hiroshima. I wait for him.

We see shocking news articles about the lack of empathy toward autistic children and those with other conditions. And we rightly demand better treatment. But when it comes to FASD, despite the fact it affects more people than autism, those stories – let alone empathy – rarely exist.

Stigma is crippling progress and denying those with FASD their rights. Too many doctors consider an FASD diagnosis ‘a label’ and discourage parents from pursuing the needed assessments. Too many social workers fail to note or tell foster carers or potential adoptive parents about possible exposure to alcohol in utero because they think this somehow taints a child. Too many teachers don’t support assessments and Education, Health and Care Plans because they think the little one is ‘fine’ because he or she somehow stays in the chair all day, meanwhile falling further and further behind. Professionals time and time again insist the problem is just ‘bad parenting’.

Such shame, blame and denial of services for FASD are about as far from empathy as you can get.

My own empathy has grown by listening, truly listening, to the experiences of adults with FASD. They give voice to those thoughts, feelings and frustrations that the younger ones cannot yet put into words. They highlight for us the creativity, persistence, determination and unique kaleidoscope of abilities and strengths that that people with FASD possess and can build upon, once their basic needs are understood and supported. They help us see FASD through their eyes, as one leading voice in the UK, Lee Harvey-Heath called his awareness raising effort.

Every person deserves to know that there is a place for them in our society, that we each bring gifts, that we each make this world that much better because we are a part of it.

We can tap into our own empathy and model how we want the world to be, today.

 

 

A Bug, BRAT and Hope

 

Blog Virus[We’ll post an audio recording of this soon, apologies for the delay for those who prefer that format.]

By SB_FASD

Curled up, knees to his chest, our guy has been seeking relief from a sore tummy. There’s nothing more heart wrenching as a parent than knowing your little one feels unwell and you can’t really do anything to help. Time must run its course.

Viruses are inclusive. They hit little ones no matter what their cognitive processing abilities. But there are some special challenges they bring to homes like ours.

He is so thin. We have to watch closely to ensure he doesn’t become dehydrated. It’s hard to know just what he is experiencing. For anyone with sensory challenges, a virus like this is a nightmare. Linking cause and effect is not easy for those with FASD. So, it’s hard for our guy to make sense of this onslaught his body is facing. He has a milk protein allergy and he has learned over years that food can affect his digestive system. He is asking me what are foods that he ate that might have done this to him. “It’s not what you ate this time, it’s a bug.”  A pause. Oh, wait, I have to watch what I say. I think fast as I see him trying to wrap his head around that. “When I say it’s a ‘bug’ I don’t mean it’s really a bug, that’s a thing people say when they mean a ‘virus’.” People with FASD are literal thinkers.

We’ve had days of this now. We are being given updates and descriptions of the outcomes. He is perseverating on this illness and counting the explosive results. To be fair, I don’t blame him. It’s been quite spectacular.

He came to me a day or so into it all, with his phone in hand. He had researched and said he needed the B.R.A.T. diet (bananas, rice, applesauce and toast). He was asking us to buy some applesauce.

I stopped in my tracks.

I let that sink in.

Our son, now 14, who has been feeling really horrible used technology and found an appropriate strategy to deal with his symptoms. The B.R.A.T. diet is not something we discuss around here. He found his way to this on his own.

That is HUGE. It’s such an encouraging sign. (Even if he perhaps predictably rejected the applesauce after one bite.)

He has been patient. Lying still. Going up and down stairs hurts his tummy. He texts me what he needs and with his updates on the toilet situation. I find this incredibly encouraging.

People have different views on allowing children to use technology. I am willing to admit we are liberal parents when it comes to this question. But we are doing this consciously and not out of parental laziness or laxness, as some might think.

We believe our son’s future success will depend heavily on his use of technology.

This illness has shown us a glimpse of how that is true.

It’s not just that he found an answer on the internet. But he considered much input, sifted through what Google showed him and he found the right answer – the B.R.A.T. diet (or at least what used to be considered the right answer, I know the advice is changing,). Most importantly, he has been using technology to help us help him.

A second example of hope in the midst of a possibly really hard time – he asked for a bath. That doesn’t sound spectacular. But I had thought having a bath just then was counterintuitive. He wasn’t feeling well. We had agreed he’d stay home. He didn’t need a bath for school. I admit it, I was a bit exasperated with the request. I help him with washing hair, etc. and I hadn’t planned on him needing one this particular morning. I was trying to work.

He persisted. I relented. Then, when he was in the bath he said quietly, “This helps my tummy Mummy. When my tummy is in the hot water it feels better.”

Oh my goodness. I felt like angels were singing. I was so excited that he had thought this all out. He remembered the way he felt the day before when bathing. He was trying to think of what might make him feel better today. He pushed for a bath even in the face of my discouragement. Though a bit late, he eventually told me why he had wanted the bath. And again, he was right. He had chosen the right strategy. He trusted I would eventually listen instead of giving up on his idea and retreating.

Again, he was ahead of me in figuring out what he needed. He was problem solving for himself. Appropriately. These moments are so important and so encouraging.

A third example…

We decided to call 111 (an out-of-hours medical line here in England). He recently started taking some medicine designed to help bladder issues and we just weren’t sure if some of these recent problems might be side effects of the new medicine. They asked us to bring him in on a Saturday morning. Our son was not especially feeling well, walking down stairs he had to stop. In prior years we may well have not been able to get him out of the house for this, it might have led to a meltdown. He asked exactly where we were going. We explained. We gave him advance notice. Some reminders as time was getting closer to leaving the house. Before we left he grabbed a wad of Blu Tak. (For those who don’t know it, it’s like putty, it’s used for hanging things on walls.) He didn’t say anything, just picked it up. I commented, “That’s a really good idea to bring that to help you. Well done!” He smiled a small smile. Having something like that to squeeze helps him to stay calm. It was just a simple thing. He didn’t make any big deal about it. He was just naturally implementing a self-regulating strategy at a time of potential stress.

It’s hard when our guy gets ill. His body doesn’t handle sensations in the same way as my own. I had actually said to my husband, “For all we know, he could be having an appendix attack, we just don’t know what his pain threshold is at the moment.” The words our son uses to describe how he is feeling are different than words I might use. We have to listen very hard and we have to be very patient to ensure he feels ‘heard’ and feels encouraged to continue to try to explain to us what he is experiencing. It is too easy in those moments of stress to talk over him or to assume we know what he is trying to say. The whole conversation has to go slowly.

We encountered two doctors this weekend who were both good in dealing with someone with a neurodevelopmental disorder. Once on the phone – the out-of-hours doctor who kindly sent us to a quiet clinic rather than the busy hospital A&E. And then the doctor who saw him in the clinic, who was very reassuring.

Unbeknownst to our son, I had assumed he was going to end up with an IV in A&E.

But here is the final, fourth oh-so-encouraging thing that happened this time. Our son has listened to us and he has been drinking tiny amounts. He was not dehydrated. We did not need to go to the hospital. What a huge relief. We have been telling our son how important it is to drink. When he rejected the prescribed medicine once we were at home (and I really don’t blame him, it is foul-tasting), he then asked me about ice lollies. I said ice lollies are good since they melt and are liquid. He asked about sorbet, does that count? And I said it’s not the same. It’s still good for him to have, but it’s not as good as liquid.

So, do you know what? Our son who was having trouble moving around, got down onto all fours and started searching in one of the cupboards. Again, I felt my own frustration rise. “What are you looking for? Can I help?” No answer. My consternation went up a notch. But then, there he was. He had found our silicon ice lolly molds, proceeded to fill two with Lucozade and asked me to put them in the freezer for him for later. I cannot tell you how very, incredibly proud I was at that moment. Again, he had gone to a place I had not in my own head. He remembered the doctor had said Lucozade (a sports drink) is okay too. He came up with a strategy to help himself. And he was right. Frozen Lucozade ice lollies are a great solution.

If you don’t know the worries about the future that come with being a parent of a child with additional needs, maybe these little moments won’t seem like a big deal. The biggest fear I have is how he will fare as he becomes an adult. Will he be able to look after himself? Most importantly, will he be able to identify and be able explain to others when he needs help?

As I lay there last night trying to fall asleep, I was thinking over all of this, replaying it in my mind. I disentangled my own tiredness with the other emotions. A strange bit of elation was tugging at my thoughts. I had a little light bulb moment when I realised I was filled with love and pride over how our son is learning.

That feeling I was having trouble identifying? It was hope.

Who knew a nasty intestinal virus that has me bleaching every surface would leave me feeling so happy?

A Dream to Help Me Cope With Anything

Blog_IHaveADream


By SB_FASD

We went out the other night to a relaxed screening of “Mamma Mia 2: Here We Go Again”. It was in a little arts centre in our town. The evening was co-sponsored by Guideposts, a regional organisation that works toward “a society where all people are valued and have equality of opportunity.”

Our 14-year old met a friend there from our local “FASD Club” (this is what the kids call their get-togethers while we parents drink coffee and chat in the local support group that we started after our son’s diagnosis). She also goes to his specialist school. My husband and I enjoyed the chance to spend a bit of time talking with her mum and some good friends who help run the arts centre.

We were welcomed as we entered by another friend of the family, a young autistic adult who was the most relaxed we have ever seen him. He introduced us to one of his friends, an older adult with additional needs.

As the sing-a-long show progressed, some of the young people got up and danced. Our son and his friend chowed their way through a cup full of sweets, popcorn and chicken and chips from a local shop. They were laughing and giggling, paying half-attention to the movie and the other half to each other. It was sweet.

I loved one of the songs:

“I have a dream, a song to sing
To help me cope with anything
If you see the wonder of a fairy tale
You can take the future even if you fail…”

“I have a dream, a fantasy
To help me through reality
And my destination makes it worth the while
Pushing through the darkness still another mile”

At 8:00 our son kind of suddenly showed me his phone and said he was tired, that he wanted to go home. To be fair, he had been in bed before we went out at 6:30 (he often goes to bed early, I think because he uses up so much mental energy in a day). Part of the negotiation in agreeing to go out was that if he told us he needed to go home, we would.

We did.

Even though the movie was just hitting the best parts, even though my husband and I both were enjoying the social aspect of being out among friends, we left. We congratulated our son on telling us he was ready to leave. We didn’t feel guilty, we were for once in an environment where others understood that we needed to head out. No questions asked. As soon as we got home, our son got into bed, turned off the lights, blasted his music and entered into his pre-sleep zone. Happy.

Once upon a time I was scared for our suggestible son to be around others with communication difficulties. When he was little, the one person he had most problems with was a child who was nearly non-verbal at an after-school club. He simply could not understand why she could not speak in a way he understood. It escalated him. She used only strong language and he mimicked it. He was used to others over-compensating for his own lack of communication skills. He couldn’t interact with her in any kind of positive way. We thought this would be what would happen if he went to a specialist school. He has always been very verbal, even if his understanding often lags behind the words.

But in reality, what happened after we moved him to a specialist school was that his whole being relaxed. This also coincided with – at the suggestion of the school and other professionals involved – giving him more freedom to dress as he likes and to let his hair grow long, acknowledging his gender non-conformity. Our son who was anxious and misunderstood for most of his life eventually, after an adjustment period, lost all those pressures to conform that had been guiding his every day. And those challenging behaviours that grew out of self-preservation started to melt away as his self-confidence grew.

Last Friday night was a vividly wonderful example of the positive ways our creating space for and opening up to the world about our son’s uniqueness has brought him and us joy and support.

There, in that room, was a beautiful future, a vision of life surrounded by friends and supportive people. The laughter and smiles on our son’s face as he was interacting with his friend filled my soul with hope. Seeing that he had role models of adults like him in that room, knowing that there were support people nearby and hopefully would be when in some very distant day that I am no longer here for him, that was exactly what I needed to see. Knowing that some of the adults in the room – community leaders – understand FASD because we have over the years given them the information that they need was also gratifying. The night was good for me too.

Many parents of children with FASD feel fear for the future. I realised at some point a while ago that my fear of his vulnerability was driving too much of his life. I had to stand down. My hypervigilance wasn’t helping. It’s a work in progress, but as he has accessed more support and as we as a family have learned more about appropriate strategies things have become easier. Much easier, if not ‘easy.’

Someone said it simply, “He is growing up.”

His is not the same trajectory other kids might typically take. But once we let go of the way society defines our son’s stages and ages, we were able to see just how little that matters.

He is relatively happy.

He is growing.

He is becoming better able to express his needs and to advocate for himself with words not actions.

He is learning to control his impulses.

He is feeling more secure, less anxious.

He has friends at school who are like him so he isn’t in a constant state of confusion, trying to understand social situations that were way above his head.

He has other friends locally who know about his FASD, whose parents know about his FASD and who also know about and celebrate his considerable strengths.

He has compassion. He is strong. He knows love.

As a mum, I wish my fear had not kept me focused for so many years on trying to help him ‘fit in’ rather than putting my energies sooner into finding him places where he could ‘be’.

If you could have seen that singing, dancing room full of happy young people and adults you too would have felt a sense of great hope.

For all those families in the midst of hard times, please don’t give up on the hope.

 

When the Flu Isn’t Just the Flu – What Happens When an FASD Caregiver Can’t Cope?

Blog_Flu

By SB_FASD

There I was, flying along at a fairly fast pace, feeling excited about the new year and really encouraged by what seems to be a possible paradigm shift in the UK with regards to FASD. OK, and yes, maybe also a little overwhelmed by the enormity of what it could mean if we collectively get this right for the lives of so many who have been ignored for way too long.

And then, three weeks ago, I caught the flu. It smacked me in the face and cut me down at the knees like nothing has for a long while. A few sheet-drenched days of fever, chills, splitting headache, dizziness and weird vision that had me thinking something worse might be happening inside my head. Flu followed by secondary strep throat and chest infection. A winning trifecta. A pulled muscle in my back from coughing too much. Unable to eat properly. The inevitable delay in getting the NHS to cough up any antibiotics. A lovely trip to A&E on a Friday night to ensure I had not stupidly poisoned myself by not realising American acetaminophen is the same as British paracetamol. And through all of this, trying very, very hard to ensure our 14-year old with FASD and his 16-year old brother with Chronic Fatigue Syndrome did not catch my plague. Praying that my husband – who was key to keeping things afloat over the past three weeks – didn’t catch anything either. He and our 14-year old had flu shots, thankfully.

It’s been three weeks now. I even have a bed sore to prove how pathetically holed up I have been. There’s nothing quite like that to make one feel old, worn and bemused. But as I start to feel human again, I am feeling positive about some things and scared about some others.

A few years ago our son with FASD would never have understood my need to stay segregated from the family. He would not have been able to empathise with me. He would likely have escalated frequently because the confusion and anxiety would have been too much for him.

But, as a family, we have survived these recent weeks. A few moments come to mind, some good, some not-so-good.

While I was in the midst of the worst of the flu, our son wasn’t fully understanding why I could not help him bathe and get dressed for school, as I do most days. I said very directly, “Look at me. Do I look healthy or do I look ill?” And the poor kid stared at my haggard face and burst into tears. I guess I was trying to be literal in helping him to ‘see’ me but it was not my finest moment. I scared him. His eyes were so distraught. I saw in that moment what would happen in his world if I were no longer there. It scared me. News reached us that a good friend and colleague passed away at the same time as all this was happening. That news and the look in my son’s scared eyes left me devastated during the height of this illness.

About a week later (when the worst of the flu morphed into the cough/strep phase), my son and I crossed paths in the kitchen after school. In a very quiet voice he asked, “Are you feeling a tiny bit better, Mummy, just a tiny bit?” My heart melted at his gentleness, at his compassion. At his need for hope.

Another day, when it was just the two of us in the house, I heard him moving quickly and making some panicked noises in his bedroom. I could tell something had seriously distressed him. I crawled out of bed to see what was happening. He had a 2-litre bottle of water in his room and had spilled about a litre of it all over the floor. He thought quickly – he gathered towels, he removed the wet duvet, he understood the danger of the wet wires, even as he was teetering on dysregulation. I reassured him how proud I was that he knew the right things to do and I helped mop up the remaining mess and change bedding (while hacking and sweating all the while).

Then, a couple of days ago he had been trying to find something for a video he was making. Hours later he said to me in a baby voice that there was a problem with a light bulb in his room. It took a bit of deciphering, but I finally worked out that when he couldn’t find what he was looking for, he had whipped over his head a phone charger that hit and broke a light bulb in his ceiling light. Over the past three weeks, his room had become an absolute pit without Mummy in there every day tidying it up. So the clean up of the broken bulb was a bit more intensive than it might otherwise have been. I had to clear the floor so I could vacuum up the broken glass. Maybe this doesn’t sound like a ‘win’ but it was. A few years ago this would have been all-out chaos, the entire room would have been literally smashed up. I would not have been able to handle the scene in a weakened state. Instead, we dealt with it, he left the room (his idea) when I started to vacuum as we both know he can’t cope with the noise.  Peace was restored relatively easily. He coped with waiting for new bulbs until his dad could get to a shop.

There is a lot to be thankful for in these fairly mundane stories. When Mum goes down, things can fall apart fairly quickly but this time this house, this house has stayed floating.

I see the weariness in all their eyes. I try to listen to stories from school. I try to show interest in the video of the extra large gummy bear with a heart in it. I nod when being told about some twist in a video game. I take baby steps to reengage. But this mum has been lying here watching box set after box set trying not to think about her mortality. (It’s especially hard not to when the GP seriously thinks you may have OD’d on paracetamol/acetaminophen and sends you directly to A&E for emergency blood tests.)

The weight of it all sometimes can’t be ignored. I find it hard to walk the line, trying not to be dramatic but acknowledging how very ill I have been is important to our family’s wellbeing. Being an additional needs caregiver is a tall order sometimes. And sometimes, sometimes we can’t do it. It’s hard in any household when a main caregiver is ill but it has a more profound impact in our house. The strains are magnified. It all is just that much harder to cope. And still, not everyone ‘gets’ it.

I feel lucky to have a network, a friend who can come over at a moment’s notice when we were sent packing to the A&E. I feel lucky that there are family members and friends who check in. I feel lucky to have employment that allows me the ability to recover rather than rush back into the fray before I am strong enough. I feel incredibly lucky to have a partner in crime who stays close and who looks after me. Even still, we have been barely getting by, feeling quite isolated and like people didn’t really understand just how hard this has been for our entire family.

But too many are out there who don’t have any safety net. Too many are struggling on this fine edge between coping and not coping: people who might not yet have the diagnoses and therapies in place that our son and our family have accessed, people who might not have the insights into alternative parenting strategies and appropriate support in school that have turned around our family’s trajectory. People who are where we were a few years ago but who don’t yet see the glimmers of hope we found.

What is out there for those people when they hit that point that I hit where they can no longer keep their heads up?

I do worry about the future. It scares the heck out of me. But I see these small signs of progress and I cling to them. I hold fast. In a crisis of spilled water, our guy knew what to do. That makes my soul sing.

I have sorely missed the hustle and bustle of being out there in it all with my boys. But there is some hope in the fact they all have gotten through this, in knowing that today after years of really difficult times we are stronger than we were.

Self-care is going to be my new buzz-word. I fear I was too worn down and that’s why this knocked me so hard. And next year? Next year this ageing body will be first in line for a flu shot.

The entire FASD community is fighting a life-and-death battle for systemic and lasting change. But we also have to remember we are all of us first and foremost on the frontlines in our own homes, and sometimes that is more than we can handle alone. It shouldn’t be so hard. And we shouldn’t judge when some find it overwhelming. This is exactly why society must put in place more funding and more supports for families affected by FASD. Whatever superpowers we may convince ourselves we have, we are in the end just human.

Doing the FASD Time Warp

BLog Time

By SB_FASD

As we welcome a new year, time is on my mind.

Abstract. Controlling. Forceful. Time marches on, they say. They are not wrong.

But in our house, we are in a time warp. Due to damage done to our son’s brain wiring before he ever saw the beautiful sunlight or felt the touch of another person’s hand, our son is weighted down by time.

For those who love a young person with FASD it can be validating to learn more about the brain-based issues behind the acronyms and terms tossed about by medical professionals (when we are lucky enough to find practitioners who knows about FASD). One of the phrases that helped us better understand what is happening in our own household is the saying that ‘young people with FASD often function at a social or emotional level half their actual chronological age’. Skills levels can vary quite unevenly, as is shown by a thoughtful graphic by Jodee Kulp that is widely shared. This can be an eye-opener.

But lately I have been thinking about all the biases that stop us from truly absorbing what this all means, even as we ‘know’ it.

Today, all teenagers seem to have to grow up too fast.

In our town, one day they are in small primary school classrooms, led through their day by one teacher and side-by-side with friends they have known most of their lives. The next day they are thrust into a 1000-person school with a dozen teachers in as many classrooms, suddenly having to merge into the educational highway.  FASD families worldwide know all too well the devastation that can happen when our precious ones crash up against that kind of unforgiving system.

In a world where teenagers are somehow expected to swim fast or move aside, kids who are on a different curve don’t have much of a chance. And while politicians and educators in the UK begin to figure out that we are sacrificing our kids’ mental health to GCSEs, there are those ‘other’ kids, like our children with FASD, who are spinning in the wind. The lucky ones are still holding on. Some might be in specialist schools, protected for a few more years. But too many are loose out there, flailing. Falling.

Because while we say a teen with FASD might only have the social or emotional capabilities of half their age, we are not really digesting what that means, not making the adjustments that necessitates. Every day in a thousand ways we parents are bashing up against that mismatch and what it means for their lives. We feel frustration at socks scattered on floors, dinners uneaten, doors unhinged, rude words that hit their target because they are said in a voice that is deeper now. But those are just the ‘obvious’ signs.

It means dealing with the disappointment of a 14-year old who waited patiently for Father Christmas, convinced a MacBook and iPad would appear because they make them at the North Pole where they don’t need to worry about money. It means helping him bathe and get dressed, to struggle over tooth-brushing and hair combing and all the sensory challenges they involve. It means Legos and marble runs that consume a room he cannot keep tidy on his own. It means playing silly games and understanding that when he starts to use baby talk or make animal sounds he is overtired or on the road to dysregulation. It means bumping into friends from his old mainstream school whose lives are completely different than his. It means having no sense yet of what relationships entail, no understanding of what half that new and very ripe vocabulary means, being unable to predict in advance the possible impact of saying the wrong thing to the wrong person.

Mostly it means stepping back from others’ expectations. From our own expectations.

Time after time, it means deflecting those ‘looks’ from some family members and friends who believe we are creating this mismatch between a body that has clearly gone through puberty and a mind that is still exploring the world as a much younger person might. It means shouldering past the ‘tut-tuts’ of those who believe he ‘needs to get on in the world’ and we shouldn’t ‘baby’ him.

What it really means is isolation.

For him and for us.

That’s the part that is really hard.

Because even the most well-intentioned and even some who love him sincerely don’t really get it, can’t really ‘get’ this different timeline and different reality.

The holidays are brutal with their twinkling lights obscuring fiendish booby-traps everywhere. We jump aboard traditions when we can. Otherwise, home it is. The same four walls that protect us from the whirlwinds that can unearth him, equally press in on us. We try to be okay with that, but let’s be honest. Sometimes, it’s not so easy to feel so ‘different’ – even as parents we find that hard, we feel alienated from the other parents. How must it feel for him?

So yes, I have been thinking a lot lately about how slowly time unwinds on this alternate clock. And what that means as I myself age.

I fear losing patience, even as I know the ‘facts.’

Most of all, I fear society losing patience.

From the outside he looks grown up. He’s not far off from 16, from 18 – when society flips from compassion (to the extent it exists) to something else. Something harsher.

Sure, we know ‘all kids need to go through the developmental stages at their own pace.’ This is a mantra we all have recited for our children, as we waited for those first words, those first steps, that first two-wheeled bike ride. Somehow, even then, we couldn’t help comparing.

Really and truly letting go of what is ‘expected’ is hard. It shakes you to your core. No matter how ‘with it’ you think you are, it’s still extremely hard to face down that disapproval that is often just around the corner when someone is marching to a different beat. People like sharing those videos of kids dancing to their own rhythm – but every time I see those videos making the rounds I think, ‘Yeah, but do they think it’s cute in daily life?”

Adults with FASD say things seem to start even out for them in the mid-to-late 20s. There have not been adequate studies done about this yet. But I fully trust the wisdom they are sharing. People think I am joking when I say I am just trying to get us through the next decade in one piece.

There is no guidepost for the teenage years. These years pound down on our sweet children at times turning them bitter. At times, leaving them feeling defeated, self-medicating, influenced by those pressures to ‘grow up’ long before they can begin to understand the impact of their choices.

And I fear being guided by fear.

I want to be strong enough to tell the world to ‘back away!’ To let my sweet son grow and learn and explore at his own pace, in his own way. To let him wear what he wants to wear, play with a doll if that is what he wants to do. Let him immerse himself in ‘Gelli Baff’ and to play with slime.

I want to be strong enough to encourage enough social spaces to include him, to not always leave him out because he cannot cope with what ‘is’ – but to build something new that he will enjoy too. To show others that it can be equally fun to do things in a different way. These spaces and opportunities are few and far between (especially hard to find for worn down parents who are swimming hard to keep their own heads above water). How many soft play areas allow 14-year olds?

And when does it change? It seems like it is going to get more difficult before it gets better. If I have a 14-year old that functions at the level of a 7-year old at times, soon I will have a 15-year old or 16-year old who is functioning in some ways at the level of a typical 8-year old.  Maybe an 18-year old with some qualities of a 9-year old. The goal cannot be traditional independence at 18, no matter what The System thinks might be possible.

And yet, though I know this, I reject some of the implications. This mismatch with age and maturity is still not yet the full picture.

It forgets the fact that he is unique. And that in that uniqueness is splendour.

Despite the rule of thumb about social/emotional age versus chronological age, he is NOT a 7-year old. He is a mix. A wonderful and original mix. And that’s the bit most people miss, even those who ‘get’ it.

He has some tremendous skills and talents – some even in advance of his chronological age. He is a delightful fusion of unconventional strengths, innocence, wonder and exploration combined with a lack of self-editing that can be truly revolutionary if we celebrate and recognise this rather than try to stamp out his individuality in the name of conformity. Some of the greats of our world have marched to their own rhythm. They saw and experienced this world differently and in doing so, they changed things. No, our society is not lesser because of that mismatch between my son’s age and maturity and skills – it is enriched by his differences. If we just allow him space to grow.

I guess my hope for this New Year is that we understand that time bends and moves differently for different people.

He deserves to be celebrated for all that he is, not merely tolerated.

I want this New Year to be full of exploration and wonder and mystery and love – for all of us. Each and every one of us, including those who walk this world with FASD. I want there always to be hope.

 

 

The Run Up To Christmas is Difficult for Children with FASD

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By MB_FASD

Christmas is coming, the goose is getting fat …. And sadly the period of greatest potential for multiple meltdowns with it.

The run up to Christmas is a really difficult time of year for children with an FASD. Schools go off timetable, so routine vanishes. Excitement builds as the holiday approaches. Multiple events pile up, one after another, in a confusing and seemingly relentless fashion.

Kids just cannot cope. Their senses can be overwhelmed every time they go places with lights and music. Kids who find it difficult to assess time can struggle with the weeks and weeks of special events, wondering why Christmas hasn’t come yet.

Worse, children who struggle to comply with all that is required of them in school, whose symptoms are treated as bad behaviour at the best of times by those who fail sometimes to even recognise that they even have life-long organic brain damage, find themselves wondering if Santa understands they aren’t being naughty and whether they’ll get presents because so often they are told they are being bad. And bad kids don’t get Christmas presents.

So, even where our youngsters manage to hold things together outside the home, very often this time of year brings an increase in meltdowns, school refusal, tears, sometimes increased violence and angry words. Friday night this week brought a broken phone screen as frustration built up, with concern about spending next week off timetable a real factor.

Things become very fraught for all. It can have a horrible effect on families, and for extended families who don’t get FASD it can be completely inexplicable. Accusations of bad parenting can fly, which just increases tensions and perpetuates the cycle of misery.

So, how to avoid this so far as is possible?

Well, it isn’t easy. But there are ways to reduce tension, ease anxiety and make Christmas and the New Year easier to get through.

We start from the point that we know our son best, and from experience understand what we need to do to help him be able to get through each day. We listen to him, and this has got easier as he has got older and is able – at least sometimes – to tell us what he needs in words to be calm and happy.

We build Christmas and the New Year around him. We do everything we can to lessen the sensory burden. We do everything possible to reduce stimuli and anxiety. We recognise our son’s disability and the needs this means he has. We give priority to meeting those needs.

This means we miss out on things. If he can go to the pre-Christmas carol singalong, then we go. He does enjoy it (he loves singing) when capable of accessing a crowded public event.

We do decoration to the extent he can cope with without becoming agitated, and when he can manage it. Sometimes that means lots of decorations, sometimes relatively few. A couple of years ago he wanted to keep the Christmas tree in the living room all year long. So it stayed (he was right, it was kind of pretty). We had already bought an artificial one as he became extremely anxious as time went by and needles started to drop.

Presents only appear on Christmas morning. Temptation would be too much if they sat under the tree for longer. Which means we stay up very late to make sure the kids are asleep as we await Santa’s arrival. One Christmas a sleepy older neuro-typical son appeared at 1.30am, just as Father Christmas was finishing. Luckily he was so tired he could be guided back to bed or we might well have had presents in the middle of the night. After all, Santa had called.

Christmas is for kids. In this case, we build Christmas Day around our son. Presents early. The kids can stay in pyjamas and play with toys and games. No pressures at all. Food and drink can be eaten where they play.

We do go for lunch and family presents with family. We’ve learned over the years that we need to keep this shorter than we otherwise would. And if our son needs to be in another room listening to music or playing on his phone, then that’s where he is. He can’t manage to sit in a crowded room for a long time, or stay still for so long. It’s better for everyone when we accommodate his needs.

In the end, it’s simple. Do what you know your kid needs to get through the holidays happily. Cut everything else out.

And while this is about children with FASD, it’s much the same for adults with FASD – they too need accommodation, support and understanding. Inclusion is more than just inviting someone along. It means helping to ensure all are able to access and enjoy the fun.

Wishing everyone happy holidays and a wonderful 2019.

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For some great advice, see this video, “Hark, the Holidays Approacheth! (Preparing for and Avoiding Behaviors During Holidays)” from Oregon Behavior Consultation.