Transitions and the D-word

By SB_FASD

Usually when we talk about transitions in supporting someone with FASD we talk about the little moments most people take for granted: the getting out of the house and into the car, the getting ready for bed after a busy a day. That’s because these moments can be ripe for escalation and chaos if they are not well prepared in advance. For a person with FASD, transition can trigger anxieties or they may have trouble switching cognitively from one task to another. They may have trouble estimating the time involved or they may simply be too on edge already to have another demand placed upon them. Anyone living in a family affected by FASD knows things can skyrocket quickly. A lack of impulse control can sometimes mean words and fists and heavy items can be flying when the person’s fight or flight instinct kicks in. Dysregulation might mean the entire seemingly simple moment of transition can explode. Moments can be fast and furious.

But this post is about another kind of transition. The big kind. The moving from one phase of life to another. Not unlike those micro transitions, there are so many ways these macro transitions can go haywire. As a parent/carer it’s intimidating and nervous-making.

No doubt this will not be the last post about this topic. But it’s the first about our little one transitioning into adulthood. This moment where we are now is known. As a family we’ve learned how to cope here in this stage. Suddenly I find myself wanting to hold onto to ‘now’ forever.

But as they say, time and tide wait for no one.

Two things happened this week that leave me thinking these thoughts. Our son and I went to see Little Mix at the O2 arena. And we visited a local college to prepare for the next phase of his schooling.

The Little Mix concert involved nearly a year long wait. The tickets went on sale before Christmas last year. That’s a lot of months in the life of someone with FASD – of any kid – but especially for a young person with FASD. For years he has been a die-hard Little Mix fan. His indelible mark on the mainstream secondary school he attended was winning his school’s talent competition as an incoming Year 7 student performing “Salute.” Even still, over the months of waiting for this concert we went through waves of him telling me he didn’t want to go because there would be too many people, it would be too noisy, it would be past his bedtime, and a whole string of other related anxieties. Just getting there on a multi-train journey was challenge enough.

We decided to really splurge and stay at a hotel connected to the 02. This was more for survival than luxury, since we had for some reason chosen tickets on Halloween and there was no way our guy could have handled public transportation through London at 11:00 pm on Halloween after the full-on sensory experience of the concert. It had been a couple of years since he had last seen a big show like this.

His expectations were high but his nerves were raw. We weren’t able to book the special needs seats for the show. So we went to the arena early. I was wearing a sunflower lanyard with an ID that shows he is officially registered with our local additional needs database. Even though there were only about 30 people ahead of us in the general queue, our guy was anxious, asking to leave, ready to miss the whole show.

Desperate and feeling intense parental pressure to somehow ensure this long-awaited night didn’t end with a big fizzle before it began, I showed the badge to someone who worked there. I asked, “Is there any way you can help us? My son has a disability and it’s too overwhelming for him to wait in this queue.”

And that’s when it happened. My son looked up at me, “Do I have a disability?”

In his 15-1/2 years of life, he had never heard me say that word. In every doctor’s visit, every SENCO meeting we have been adamant that our guy not hear phrases like this – we would insist that the professionals wait until he was out of the room before going into details. We would demand all discussion in front of our son was positively framed.

We were being led to another, shorter queue so my reply was quick. “Yes. It’s because of FASD. It makes it hard for you to cope with things like being in noisy places and standing in lines. There is another queue we can use.” Access to this other queue, a special elevator and a quieter holding area before we could get to our seats made the rest of the night possible. We weren’t gaming the system. He needed this. He had a right to be there.

But the ‘d-word’ hung there and over me all night. What had I done?

The night was a success in the end, even if I was on high alert for the zillion ways it could have unravelled. I wasn’t allowed to sing. I couldn’t tap my foot. He wore a pair of new ear defenders (“these are the same kind we have a school”) but was quite concerned about noise levels. We were able to avoid the after-concert crush by using a special walkway back to the hotel, so we were thankfully in bed 20 minutes after leaving the arena. We had an awesome next morning enjoying the hotel’s spa. The quite amazing ‘relaxation pool,’ steam room, sauna and glowing mini-mountain of crushed ice provided all the proprioceptive and sensory input anyone needed. This mum realised she needed this as much as the not-so-little guy.

I began to forgive myself.

The reality is that our son has rights as a person with a neurodevelopmental disability. And he is getting old enough now that he needs to learn those rights and how to self-advocate. He’s been doing more and more of this in school and at home. (“My brain can’t handle that” is his main phrase to tell us when he needs a break). But out there in the world, sometimes we need to use the buzzwords that others recognise.

We will of course revisit that conversation time and time again and discuss it in different ways and ensure he knows that the ‘d-word’ does not mean ‘less than’. But it is indeed time to help him self-advocate in the wider world. He’s transitioning into adulthood. And while his transition will be on a different time scale and the goal is more about interdependence than independence, he still needs us now to start that preparation. And this means more than just ensuring he has ‘learning for life’ skills as his school calls it. He needs to be a self-advocate in a system that is harsh and that ignores too many. He needs to know that he has the power to wave that badge and ask for another queue even if I am not there to do it for him. To seek accommodations from an employer. Or to stand firm when some FASD-denier or cost-cutting and overworked bureaucrat belittles his condition or seeks to rescind his benefits as happens all too often to adults with FASD.

The second thing that happened this week was going to the local college’s open day (in England students must be in school until 18 but can switch at the age of 16 to ‘colleges’ that offer wider ranges of programmes). Yet again, we weren’t sure we’d be able to get there. It involved going out in the early evening, never easy once he’s come home from school and is unwinding from the day. He decided to bring his new build-a-bear rainbow cat called Sparkles. The designers of the 02 are clever people, placing a mall all around the arena entrances. No doubt we are not the only concert goers to have spent an extra wad of money there. And this workshop with its accepting employees explaining the scented inserts and beating hearts and soft plush huggable toys was pitched at just the right level for our son who needed some reassurance and comfort in an unfamiliar place.

So there we were at the college open night, carrying the unmissable Sparkles and concerned that the too-small-now silver-sparkled high heels our son was wearing might be too uncomfortable for walking around the campus. But he was insistent. He knows he won’t need to wear a uniform at college and this means he can choose what he wears, this was not the night to battle over attire even if on practical grounds. (When they were making Sparkles’ birth certificate at the build-a-bear workshop it was the first time I had seen our guy tick the ‘prefer not to say’ box for gender, so we did likewise when filling  in his college application.)

I had not anticipated that this was a general open night. There we were waiting in yet another chaotic queue, this time without any lanyard and also potentially needing to escape if our guy became too overwhelmed. Once we got past the initial scrum and were brought to the separate building that houses the inclusive learning section all was well. But standing there in that glorious mix of a mainstream school hustle and bustle with kids who seemed so much older and who were towering above our guy, those old familiar worries crept up on me. Will he be safe here? Will they bully him? Will he be understood? Is he ready?

We have had 3 years where he has been in a protected environment at a specialist school and that has allowed him to relax and to grow. I know this college also will protect him but it’s less isolated. To get to their inclusive learning building you have to walk right through the main campus.

“I only have one more year of school,” he said that night and that’s when this hit me again. We haven’t really been talking with him about his future. “You can stay in school until you’re 25 if you want.” His eyes popped out of his head. “It’s not like school now. There are all kinds of things you can do. Music or whatever you want. You can do a supported internship somewhere. There are lots of options. You don’t need to decide now.”

In other words, that Education Health and Care Plan was hard fought for and every ounce of its superpowers will be utilised.

You have a right to education and supported internships, my son. And we have a job to do to help you understand those rights and all the other rights you have.

A friend took me to task for using the term ‘disability’ when I told the story of that night at the 02. Of course. I was appalled at myself for using it. I know that our son has strengths. I celebrate diversity and uniqueness. I am well aware that the term is fraught with negative connotations. As I said, this was the first time in 15-1/2 years he heard it. And I am kind of proud of that. But sitting in that relaxation pool where he was pretending the overhead water jets were the ice bucket challenge, I forgave myself. And realised we can’t ignore the word either.

We must reject the stigma around the ‘d-word’ and ensure our guy is not ashamed of claiming the supports and benefits that society has legislated are his by right. If that means at times waving a disability pass, then we have to show him how to do that with pride and with strength, not to hide in a queue that might be suffocating or drowning him. If we don’t lift him up now and prepare him for those moments then, who will?

The Lonely Parent

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.

FASD Day – Sharing Hope on the 9th Day of the 9th Month

SB_FASD

The ninth day of the ninth month is FASD Awareness Day, chosen to remind us all of the importance of staying alcohol-free for the nine months of pregnancy. It’s a day when people stand up with and for those who have FASD – a lifelong brain-based condition that is caused by alcohol exposure in the womb. It’s a day we encourage the powers that be and the general public to address this public health crisis with the seriousness given to other neurodevelopmental disabilities like autism.

It’s a day when we marvel at all that our own son, now 15, has accomplished in his life, the great strides he has made in understanding himself and taking on board strategies that can help him. It’s a day we celebrate his strengths and are thankful that he has been surrounded by professionals, family and friends who have stood with him, with us, as we have come from a place of crisis to a more stable ‘now’. It’s maybe not unrelated that today he had a music mix released – all by his own doing – on Amazon and all the major music streaming platforms. If we are honest, we aren’t even sure how he did this – though we know he’s been working hard at it for weeks, showing us once again that he has vision and abilities that we have yet to fully understand. Magic!

Statistically, here in the UK 6% or more of the population may be affected by FASD but most are undiagnosed and misunderstood. They are in our classrooms, in our workplaces, in our communities, in our families – struggling. If unsupported, it’s likely that on top of the physical, sensory and cognitive challenges they face they are also grappling with secondary issues such as mental health problems, addictions, homelessness, sexual vulnerability and financial insecurity. If FASD is unaddressed and not properly supported, it can become a perfect storm that wreaks havoc, sometimes across generations.

But FASD Day is a day of hope. It’s a day when people with FASD stand with others for change. One initiative is the Red Shoes Rock awareness campaign that spans the globe, encouraging those with FASD to be bold in their self-advocacy, to stand up and be seen. It’s  a day when people speak out to encourage more awareness of FASD and the risks of alcohol in pregnancy.

Here in the UK, change is coming in ways big and small. The government is finally responding – a new NICE Quality Standard on FASD will, by September 2020, lay out five areas for improving the quality of care regarding FASD; the Department of Health will be releasing a report soon addressing FASD and for the first time ever it has set aside nearly half a million pounds to fund voluntary and charitable organisations work on FASD. These are baby steps but important, the signs that like a huge ship at sea turning direction, the massive systemic change that is needed is underway. These breakthroughs are happening after decades of dedicated work by pioneers in the field keeping this issue at the forefront – dedicated experts, a handful of MPs, peers and stakeholders. And it’s been fuelled by the collective voices of this community increasingly joining together and insisting that policy makers hear our voices.

In too many of our homes, the changes, however positive, will still take time to translate to the peace and security we want for our loved ones. Our children – big and small – are still facing daunting challenges every day of their lives. It’s heartbreaking to know that they face a world every day that does not respect and honour their courage and effort, to know they do not have access to the tools to help them nor to professionals with appropriate knowledge. Worse are those instances when we hit a brick wall of professional indifference and stigma.

FASD Is often the missing piece of the puzzle when trying to figure out the ‘why’ of behaviours that are confusing and sometimes alarming. FASD can be the reason why a child might have trouble learning or calming, the reason why a young adult might keep melting down or striking out when frustrated or overwhelmed, the reason why a person we love doesn’t follow instructions, lacks impulse control or seems oppositional, the reason why our loved one struggles in school or can’t keep a job or self-harms.

FASD is called a hidden disability because we cannot see the very minute but very real organic brain damage that happened long before they drew their first breath. For someone with FASD, changes in the way their brain wiring developed means they cannot do some things others take for granted, at least not without appropriate and lifelong supports. Little people with FASD grow up into adults with FASD. They all deserve our empathy.

People with FASD have many strengths that can be built upon to create pathways toward success, but this can’t happen if they are constantly berated, punished and made to feel ‘less than’ for things beyond their control.

Someday here in the UK FASD Day will be widely acknowledged. But in the meantime, some of the biggest changes are under our own control. If you know someone who might have been exposed to alcohol in the womb and who is struggling, give them a break. Love them. Don’t blame them for actions that you find confusing. Learn about the ‘neurobehavioral’ model of support, educate yourself. Join local and online support networks.

Though it may be hard, as it remains a postcode lottery, help them seek diagnosis and support. Fight for an Education, Health and Care Plan. Fight for thorough assessments for speech and language (including receptive language), for occupational therapy/sensory integration, for cognitive challenges with executive functioning and adaptive planning, for the benefits and supported employment they deserve. Appeal, appeal, appeal. Make some noise. Contact the papers, radio stations, MPs, Clinical Commissioning Groups. Educate your family, friends schools, communities. Open up and let others know what you are going through. Raise awareness of the risks of alcohol in pregnancy. Be bold. Wear red shoes if that reminds you that we are all part of a much bigger picture.

“The road is made by walking it.” Together we are making changes – led by people with FASD who show us what they need and together with an amazing army of people from many walks of life and from many backgrounds and skills sets.

Change is coming.

Of course, for those who live it, every day is FASD Day.

But on this 9th day of the 9th month, as we are rocking in our red shoes to our son’s newly released track (!), we send you greetings and solidarity. From our house to yours – we share with you our hope for brighter tomorrows. With your help and working together, we will get there.

The Slime Whisperer

By 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.

Some Days I Want to Bury My Head Under My Pillow. And I Do.

By SB_FASD

This morning I literally curled up in my bed, trying to ignore the dread creeping up and over me. There are times like these when the world catches up with me and forces me to be still, to ignore my in-box and absorb all that is happening. I know enough now to know that I simply cannot ignore that feeling. I have to give it time, to honour it and explore it. It’s part of my own resiliency. It’s critical if not always convenient.

Though our son has been doing better, he is not free from danger. He remains vulnerable. Head buried under my pillow, I take stock. I become aware of how fear literally grips my insides. I need to calm it. I need to centre. (A recent camera down my throat proved that silently these worries have indeed been drilling into me deeply when I was not paying enough attention. The pills, they say, will repair the as yet minor damage. I wonder.)

For now, I must digest the fact that yes, we have just had three incidents in two days involving lighters. The knowledge sinks into the pit of my stomach: three years later, lighters are back amongst us again reminding me of some of the darkest days we have had around here. I tell myself not to panic, now that he’s older it’s safer. Am I kidding myself? How safe can anyone be with a lighter hidden under their bedroom pillow? I discovered one there, moments before I officially declared myself in this funk.

I start ticking things off in my head. I guess we are back now to the days of checking all bags and searching the likely hiding spots every night. Back now to warning everyone around us to make lighters inaccessible. Back now to feeling not good enough, not vigilant enough.

This morning while he was in the bath he was asking about shows that he used watch when he was 3 or 4 years old – Sesame Street, High Five, Cartoonito Karaoke. He was clearly viewing them on YouTube last night. Why now?

I feel selfish. I took a night out in London to celebrate a friend’s 50th.  This friend, one of my best and longest friends, has had a birthday party every year since we moved here 13 years ago. We have only managed to get to one other of these parties. So often when parenting a child with FASD, we put our social lives on hold. But this time it was important to me to be there. He had a sleep over. Though I doubt this is the root of the issues, I know it didn’t help and so I do the obligatory beating myself up – wondering if my night out somehow has been a part of the ‘why’ of this?

There are other more likely reasons. He was at the doctor this morning for some nasty phlegm and coughing. The doctors say this is due to post-nasal drip not an infection. His sensory system cannot handle anything out of the norm, let alone this.

His long hair (now nearly down to his waist) has been causing angst. It gets knotted and all the detangling conditioner and sprays and special brushes in the world cannot make this easy for a child with sensory issues.

And then there are the ‘normal’ year end insecurities. His school has been moving all the kids up to the next year now before summer break. It makes it easier in the new school year but it fuels anxieties in the short-term. He keeps telling us he is not ready for Year 11, he’s not old enough to be in Year 11. He wants to be in Year 10. We are not sure exactly why.

His anxieties have been so heightened that a couple of weeks ago school took him off timetable altogether. He ‘was distressed’ at school (we are still not sure what they meant by that). There had been some disagreement between him and his classmates. Something to do with relationships and him not wanting to be in that game at all. Some comments about his hair and being misidentified by gender. (Tricky waters, these.) He also had refused to go to a school ball and we are not sure why. Everything has been making him anxious.

Sometimes I wish I could put a surveillance wire on him so I could hear every conversation people are having with him, so I could know where some of this is coming from. He is not able to tell us. Due to his FASD, he cannot connect dots on his own. We have to be detectives, with only half-formed clues and our bedraggled intuition to guide us.

For a few of his happiest days in a while, he was allowed to go to a special part of the school that is a healing space. They even have school dogs there. There’s a lovely specially trained teacher there who worked with him using sensory toys. It always helps him to visit “the Hub,” reminding me how important 1:1 attention is for him. Back now in the main class, he’s struggling again. I become “that parent” and dash off another email to school, trying to keep our lonely guy on their radar even as I am aware they have so much to juggle already with the end of year chaos.

He’s barreling toward 16, only one year away now. The services and the interactions are changing around him, forcing him to ‘mature’ in a way he is not yet able to do. It scares me.

I have been thinking a lot lately about being elderly parents. We are not wealthy. We do better than most but still we have trouble making ends meet. We live in a society that is increasingly ignoring the needs of those with disabilities. Will our youngest son really be okay when we are no longer here to help?

I wanted to burrow my head further under the covers rather than sit up and face this particular day head on. So I do. I give myself permission to step off my own timetable.

There is another reason for these deep thoughts, the day literally started off with a jolt. This morning at 5.30 am our elderly neighbour’s alarm went off. Somehow, they didn’t hear it for the half hour it took for us all to try to figure out if something was wrong. Hard of hearing, they slept peacefully and didn’t hear the alarm the rest of the road did.

I guess I am afraid that I also might not hear the alarm. I fear missing the signals.

Sometimes, I don’t know what to do first, where to focus. We are always trying to change things on big levels (my husband just became a town councillor, on top of everything else). Our lives are multi-faceted and hectic and this puts us perhaps a bit over the line toward disorganised. Sometimes I fall into a kind of tunnel vision just to keep myself on track. I am sure others think this is me being aloof, when really it’s just a survival skill. I try so hard not to let the balls I am juggling fall that sometimes I don’t see what (or who) is right in front of me. Even our kids. Seeing that lighter under that pillow made my blood run cold. What else haven’t I seen?

To those who know us, who know me, please, if it ever seems we are not hearing the alarm in our own home, please bang hard on the door to get past whatever veneer might seem designed to keep you out. Please know that it’s not you we are trying to keep out. It’s the fear, the whatever’s-around-the-corner that we are trying to keep at bay.

Overall, I believe we’re basically ok, mostly under control. Having thought it through and given myself space to calm, I think this all is just an end-of-school-year, nearly-birthday-time blip. He has an awareness and coping strategies that he did not have three years ago.

The thought actually snuck in that maybe there’s a positive spin. Maybe things have become so good lately that we haven’t realised just how tame this year’s last-weeks-of-school tension is compared to what some end-of-the-school-years have been like. Maybe we’ve forgotten what ‘grim’ really looks and feels like?

On the other hand, I dread becoming so inured to it all that I wake up one day when the oh-so-critical transition into adulthood crashes around me, realising I slept through the alarm bells. That I wasted the time available to us. That’s the big fear. I know too many kids who have been crushed under the pressures of these late teenage years. Some are lost to us forever. Some have literally died. So please, someone knock really hard on the door and wake us up if somehow you think we are missing the signals.

Ten years from now, I want to look back on this time with relief and say, oh woman, no worries. You were on top of it. And look! They are in their mid-twenties and you all made it through.

Won’t that be a great day?
 

Be Angry, But Not at Those with FASD

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.

 

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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.

Seeing What is Not Seen in the SEND Debate: FASD

By SB_FASD

On 30 May children and families took to the streets in cities across England to fight for more funding for special educational needs and disabilities (SEND). Petitions were delivered to centres of decision-making. Twitter lit up with the hashtag #SENDNationalCrisis.

In a powerful piece in The Sun, Chair of the Select Committee on Education in the House of Commons Rob Halfon, MP wrote that: “No fewer than 78 per cent of permanent exclusions are issued to those with special educational needs, with 4,000 special needs students being excluded every week.” In another piece it was stated that “According to the NEU teaching union, special needs provision in England has lost out on £1.2 billion since 2015.” It’s a crisis all right.

The reality behind these figures was laid bare in a tweet by @Dyspraxialife: “It’s easy to show compassion for a child who is struggling. They have innocence, purity, vulnerability and the cute-factor. I wonder how many homeless people who get walked past every single day were once struggling children. Instead of love, they now get spat at and demonized.” This isn’t about ‘others’ – it’s about the health of our communities, the kind of society we hope to be, the smart use of limited resources. It’s about political will and choices.

So why do I feel like the air has been knocked out of me?

I see what is not seen, the “pink elephant” in the room as some advocates have started to call it: FASD. Foetal Alcohol Spectrum Disorders.

The best study to date in the UK says more than 6% may be affected by FASD, organic brain damage resulting from exposure to alcohol in the womb. FASD has been called a ‘hidden epidemic’. Statistically it affects more people than autism.

As I scroll through videos from the marches, I hear clusters of diagnoses and symptoms that match a pattern not uncommon among those with FASD: ADHD, ASD, OCD, hypermobility, dyspraxia, etc. I hear parents discussing exclusions from schools due to meltdowns that schools cannot handle.

I fear there are many missing the vital insight needed to put in place appropriate supports for their loved one, a diagnosis of FASD. FASD is a full body diagnosis, more than 400 conditions co-occur. Alternative strategies are needed at home and in school. Kids with FASD are often punished and excluded for behaviours that result from cognitive processing and sensory issues that contribute to a lack of impulse control, an inability to consistently remember what has previously been understood or to link cause and effect. Transitions are hard. The dysmaturity involved means everyone around the young person needs to adapt expectations and change the environment to give that person their best chance to succeed. Without lifelong support, the statistics for people with FASD are truly grim. Homelessness is just one of the possible outcomes.

There is great stigma at play here, fueled by a devastating lack of understanding. To even raise FASD in many parent-advocate or professional forums can bring a barrage of negatives based on the old-school shaming-blaming ethos. But we can frame the discussions differently. As outlined by the late Pip Williams, founder of the UK and EU Birth Mothers Network-FASD, the reasons why women drink in pregnancy are complex. Many pregnancies are unplanned. Most women don’t have the information about the risks of alcohol in pregnancy. Very often pregnant women are not drinking alone. For those who need help quitting, support services are severely lacking.

To help confront this stigma, my husband, son and I marched yesterday carrying huge brightly coloured signs made by the wonderful young people in the E. Herts and Area FASD Club that simply said “FASD” on them, wearing hats that said, “Ask me about FASD.”

One person who did ask was a recently retired Special Educational Needs Coordinator who had worked in two different schools. She didn’t know what FASD was. As she thought more about it, she said she had one child once who had Foetal Alcohol Syndrome (this refers to the 1/10 of those on the FASD spectrum who have certain facial features). A career SENCO would have had many, many students with FASD under her charge. Her question shows the vital importance of increased training on FASD at the frontline of SEND services. People don’t know what they don’t know.

We lasted at the march as long as we could. But there are no pictures of our signs out there in the news reports. To be fair, we left early. Our son with FASD was overwhelmed by the sensory input – the shouting, the whistles, the heat, the stop and go. Cognitively he was overwhelmed, unfamiliar with the march route, his anxieties soared. We didn’t even make it to the centre of the town, but we peeled off from the others, called it a success and came home. That’s the reality of life in our family. And the very many other families who were unable to be out there yesterday.

The tragedy of this absence from the debate is what has knocked the wind out of me. We know that early diagnosis and appropriate support create happier families and brighter futures for those with FASD.

And yet, even on a day when the streets are full of those with special educational needs and disabilities, our kids are still not part of the picture.

But I won’t stay down for long. I know change is coming. In England next year there will be a new NICE Quality Standard on FASD. Soon the health care system will be held accountable to improvements in services for those with FASD. The educational field too will have to wake up to FASD.

There will be no lasting solution to this SEND crisis unless and until FASD is a part of the picture.

When Going for a Walk is a Radical Act

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”

 

 

 

25 Years After My Mom Died

By SB_FASD

It happens every so often that Mother’s Day in the USA coincides with the anniversary of my own mother’s death – May 12^th. That time – I think it’s a quarter century ago now – is a blur to me. The years were traumatic, infused with much pain and suffering. My father and my mother had long-term horrific illnesses that wove throughout my early twenties. I don’t like looking back at those years, though I cherish the love. Life becomes very real when we stand with loved ones at the edge of death. If there’s any good from their early deaths, it’s that I gained some perspective I might not have had for decades.

I am forever grateful my mother was able to drift away on a spring breeze. She took her last breath at home right there in front of my eyes. I was holding her arm. I could feel the moment my heart kept beating when hers stopped. I shared that pulse in her womb and in her death. I have no doubt that it’s my job to carry her heartbeat into the future. Her strength. Her clarity.

I think of my own imperfect motherhood. I think of how we all, even the best mothers out there, are really just getting by without rulebooks, without much more than our love and our faith in brighter days to get us over those hills, out of those valleys. That certainly is true in this house affected by FASD.

My mom came from a big Scottish-American family that lived hard, played hard, loved hard and fell hard. My grandmother had 17 pregnancies – 9 children lived (8 girls, 1 boy). Alcohol and addiction flow through the generations.

I was just lucky, really. I don’t think in my young student and professional days I understood just what fire I was playing with when I was out binge drinking with my buddies.  It took me decades to shake off the habits I had learned about what defines ‘a good time.’ But I did. And I am proud of that.

I wonder what my mom would say knowing now what we know about alcohol, pregnancy and the impact it can have on lives. I wonder what she’d say about my career switch into this whole new issue area.

She and her sisters drank and partied through their pregnancies. Even so, I think she’d get it. She’d recognise those tell-tale behaviours, challenges, outcomes that we now know can arise where and when there are undiagnosed Foetal Alcohol Spectrum Disorders.  In every neighbourhood, every community we all know people who have struggled, spiralled, become addicted, lost jobs, had mental health issues, suicides. It’s heartbreaking and tragic that some of these may be due to FASD that went unrecognised.

One time when my mom was in hospital, I was with her as she rolled her chemo bag to the doctor’s smoking area. Some tired surgeon was there, having a cigarette after a long day. My mom took a long drag, blew out the smoke and then eyed this unsuspecting man directly. “I know what my excuse is,” she said, “but how the hell can you stand there and smoke that with all the education that you have?” I was used to my mother’s frankness, but even for her this was spectacular. I will never forget the truth of that moment. The doctor just locked eyes with her. He threw his cigarette on the ground without a word and went back to his work.

I think she would approach this whole issue of alcohol in pregnancy in the same way.

She’d want us to be straight up. You can’t look into the eyes of someone with FASD and be the same again.

Now that we know, no more excuses. Even if and where it hits close to home.

There is no point sugar-coating the facts:

• Alcohol in pregnancy risks FASD.
• FASD is lifelong.
• No mother wants their child to face the kinds of permanent challenges that can arise when developing brains and bodies get seared by alcohol in the womb.
• However, if a child has been exposed to alcohol in utero they must get diagnosis and appropriate support to help them grow into their potential.

On this US Mother’s Day, which I believe may be 25 years after my own imperfect but beautiful mother died (I can’t remember exactly), I am contemplating again how complex and yet how simple these issues can be at the same time.

The reasons why people drink during pregnancy, including genetic, social and cultural reasons, are long-standing and can be intergenerational. It’s not easy to break the cycles, to see the problems. Sometimes women need significant scaffolding and supportive programmes to help them – such programmes exist but are not nearly as available as they should be. But for many, they just see this as a ‘personal’ choice, a ‘right’. I know people who still question whether FASD exists.

Many, many of us have undiagnosed FASD in our extended families. Maybe in our own homes. After all, it’s a spectrum that experts believe affects more people than autism. Nobody wants this to be about them or their family or their classroom or their patients. But it is.

Stigma suffocates the discussion, fuels the misdiagnoses.

I am not a perfect mother. I did not have a perfect mother. But like her, I love hard. And I try hard. And I miss her. We all try each in our own way to do the best we can in the absence of a rulebook.

But on this issue the rules are now clear.

• If you avoid alcohol in pregnancy or when trying to get pregnant, your child will not have FASD.
• If you are drinking alcohol and having sex, you should use birth control. (You should be using it anyway, my feminist friends, unless you are planning a pregnancy.)

I just keep thinking about that question my mom asked that surgeon smoking a cigarette. “With all your education, what is your excuse?”

You can’t un-know something, though you may put your head in the sand.

We can do more to get the word out. But it’s got to be also an internal acceptance too. This isn’t about those ‘others’. It’s about all of us.

It’s about moving beyond shaming and blaming and accepting that it’s quite possible that we know more people than we think we do who are living with the impact of having been exposed to alcohol in the womb.

The medical guidance in the UK only changed three years ago. It’s not like anyone ever purposefully sets out to endanger a pregnancy. But we have to accept the risks are real. We have to accept that no matter what our income or education level, no matter if we drink pink gin, prosecco or cheap lager all alcohol is at the end of the day a potential poison to a developing embryo or foetus. We have to accept that in our communities thousands upon thousands of people are living with the effects of that exposure, undiagnosed, unsupported and struggling through their own lives. If we opened our eyes to that reality, we could put in place supports that can change their trajectories. It’s the understanding of the condition that can lead to brighter futures.

Unlike that surgeon who was smoking in the face of a woman dying of lung cancer, when a pregnant woman drinks alcohol it’s not just her own health that is at risk. She has to think forward and imagine looking into the eyes of an infant that might be inconsolable, a toddler who is delayed in learning to walk and talk, a student who can’t keep up, a teen who is overwhelmed and unable to cope, an adult struggling to hold a job. She has to understand the power of putting down that glass, to know that it’s always better to stop at whatever point in the pregnancy because the baby’s brain is developing throughout.

Paraphrasing Maya Angelou, when you know better, you do better.

It’s time now for us all to do better. You can’t un-know what you now know.

And that includes every single medical, educational and care professional, including those who resist getting themselves trained up on this issue, those who spread misinformation and deny people the diagnoses, help and support they need because deep down they too play into the stigma.

I’m asking for my mom, “What exactly is your excuse?”

A couple of days ago, there was a game-changer. An announcement from the Department of Health:

“Department of Health and Social Care have got confirmation that NICE will be developing a Quality Standard on FASD based on the Scottish SIGN guidelines. NICE, working with key stakeholders will develop a work programme to help them deliver this over the coming months. This is welcome news as a step to help improve diagnostics and the clinical pathway in England on FASD.”

What this means is that the FASD-deniers will no longer will have any excuse. And that my friends, is huge. Change is coming.

Thank You Pip Williams

SB_FASD

I was not sure what to expect that first day I attended a support group. I had never been to anything like it. I am a strong person, or so I tell myself. I pride myself on not complaining, on getting by. But I couldn’t. We couldn’t. Not any longer. Life in our house was ‘extraordinary’, as I recently heard someone call life in her own home with a child with a Foetal Alcohol Spectrum Disorder.

We knew we had to widen our circle. We knew we had to talk to others, to find out more. I know now I was probably in a mild depression.

We needed help.

So we took a leap of faith and went to a support group organized by NOFAS-UK, not knowing what to expect. Nervous.

Little did I know that walking into that room would literally change my life. The people I met, the things I heard profoundly affected the trajectory of our family.

That is in large part due to one woman who was sitting across the room. Maybe I am conflating memories, but I see her, looking over the top of her eyeglasses. Seeing me. Really seeing me.

Everyone was then nameless to me. I had no idea about organisations or networks or the politics of this community. I put out there into that space the fears that I had for our son’s future. Expressing those fears, naming them was hard.

Lucky for me, among so many amazing people in that room (trailblazers in this field, all of them), lucky for me that day there was this one direct, straight-talking woman with eyes that seemed to lock mine to hers. She said what I was not expecting.

She said simply, “Yes, that might happen. Or something worse.”

I was stunned. Mesmerised.

“And if it does,” she continued, “you will come through it. Even if that happens, there is life after it. I know. I have lived it.”

Bam.

I was an instant Pip Williams fan.

I didn’t know her story then. In fact, I only learned some of it last night at her memorial celebration. But I recognised the voice of truth when I heard it. I knew that here was a strong, salt-of-the earth woman who had been places and who had overcome. Positive and powerful.

She reminded me of my Scottish-American mum. She reminded me of the people I have known throughout my childhood who have had a hell of a life, but who still rise each day to do what good they can in this world. I have some parts of me that are not often obvious here in my England life. But Pip reminded me of home, in all its complexity. In all its vibrance.

I felt drawn to her not because she carried a heavy past but because despite her heavy past she magnificently exuded love.

As people said at her celebration, Pip was fierce in her advocacy for people and causes she cared about.

She’d certainly say it like she saw it. That was hard for some to take, maybe easier for me because, like I said, it reminded me of home. In a country where people often suppress their raw reactions, Pip was disarmingly direct and forthcoming.

But – this was the real unique bit – she’d also reconsider if need be. She’d also reconnect.

She had a vision and she sought allies. She built networks. She watched and she observed like a hawk (I used to joke with her that she missed her real calling in working for MI5). Dyslexic, she forced herself to consume large amounts of material. Non-plussed, she also asked for help – for example, when typing up long comments. (I was supposed to help her write a book she was going to dictate.) To her it was not a sign of weakness but of power to build up a community where each contributes based on their own strengths. That is revolutionary leadership. Yes, she was mesmerising.

She taught me a few things about this FASD world that I consider pivotal.

She stood tall in her insistence that we have to get beyond the stigma. Stigma is stopping society from dealing with this issue. Women who drank (or who are drinking) in pregnancy are not coming forward because they fear their families will be torn apart. She worked with many networks to provide real, comprehensive, joined-up support for women – especially vulnerable women. She advised local, regional and national projects, she sought out best practices through domestic and international networks.

She developed a UK and European Birth Mothers Network to provide a space where those who have given birth to a child with FASD could seek support and understanding. She also was proud of the changes she had helped to bring about where the birth mums were no longer on the side of the field, but integrated. At the tables. In the groups. “We are all parents,” she said.

I had a long chat with her one day about my own presentations on these topics. I told her I felt uncomfortable standing in front of people and declaring my son is adopted because I do not think of him that way and I never introduce him as adopted in any other context. It felt wrong to do so in this context. I asked if she thought it would be misrepresenting things if I don’t say that he is adopted or if I were to wait to say it until at least halfway through the talks. She became animated. It was like this was a breakthrough she had worked for. I hadn’t fully anticipated her enthusiasm. “We are all just parents,” again and again she emphasised that. So yes, now when I give talks, I purposefully leave people wondering at least half-way through the talk. I have felt at times just a fraction of that stigma when people make assumptions as to whether or not I drank in pregnancy. Being under that scrutiny even if only for a short time in a limited situation makes me all the more convinced that birth mums who become advocates are among the strongest people I know.

Pip Williams is at the top of that list. A warrior mum who fought hard and, yes, fiercely for better lives for people who remain voiceless too often.

She highlighted the critical importance of having those voices at the tables, in the planning meetings, where decisions are being made.  “Nothing about us without us” was one of her rallying cries. When she saw birth mothers and other stakeholders being side-lined, she called it out.

She believed in the use of technology to unite people for support and for community – the FASD UK Facebook group that she and Maria Catterick started today has more than 2,200 individuals and families linked together. The FASD UK Alliance is a coalition of groups that grew out of that initiative, diverse groups working together for common goals.

Pip has presented at international conferences and in quiet rooms, advised the media and policy makers and held a lost and vulnerable mum’s hand. I stood with her on a stage at BAFTA while she had medicine strapped to her body. She was not someone who fit in any box. She was a force. She was powerful.

But she also was sweet and open. She’d send me photos of men with funky long hairstyles and androgynous clothes to show my gender non-conforming son. She was there with supportive words when a young family member of mine overdosed on heroin. She checked in. She was one of the few people who when she called me ‘luv’ I felt it.

I am going to miss her. Our last day together was in the hospice. She had plans for a birth mother’s retreat/conference that she wanted me to help her make a reality. She was having a rough day. “We’re close enough friends,” she laughed through her illness, “that we can plan and talk through this” (her frequent breaks in the conversation). I have those plans. That conference will happen. I do wish, maybe, that I had given her a longer hug that day. Because while she was planning to be at the conference, I had my suspicions. But she was clear, she wanted to make sure the ‘bus keeps running’ and that was where her energies lay, not in long goodbyes.

Change is coming in this country where more than 40% of women drink alcohol in pregnancy and yet there is little or no diagnosis and support for the more than 6% of people who may have Foetal Alcohol Spectrum Disorders. Make no mistake. When that change comes Pip Williams will have been one of the main reasons why that transformation occurs. She led “at the coalface,” as she used to say. And while she can no longer bash away at the intransigence, those of us she mentored will carry her determination with us when we do break through.

She talked about the importance of keeping the light on so people could find their way if they were lost and seeking. I don’t think Pip realised she was the light for so many of us. Now, the best we can do is pay it forward and carry her dreams with us into the future, into brighter days.

I’m struggling. This post seems inadequate, longer than it should be. This is a personal blog but this loss to our community isn’t about me. I guess I am trying to show in a bumbling way just how profoundly she touched my life. For days in various ways I have been wrestling with how to honour someone who showed me the way past my fears, out of my comfort zone and into a whole new career and mindset. Because that is what she did for me. A direct result of locking eyes with her that day at that support group was my ultimately giving up a 30-year career and responding (with Pip’s “please, please, please” and “yahs!” echoing in my head) to an ad to run the National Organisation for Foetal Alcohol Syndrome-UK. And – because work and life are intertwined in this community – also simultaneously as part of this journey we have been able to better understand our son’s needs, put in place appropriate support, change our own parenting styles. So the crisis our family had been facing – that drove us to that support group – is, for now, a thing of the past. We are doing well. Facing those fears that were holding us back was a key, pivotal step.

And I am but one of thousands whose lives she touched here and around this big, beautiful but imperfect planet.

I guess as simple as it seems and messy and long as this post may be, the best I can do is to give thanks for being able to share some of the journey with Pip. And wherever she is, no doubt she’ll be watching to make sure we all keep it honest and stay true.

I said last night I am not ready to say goodbye. So, I won’t. I’ll just continue to walk on side by side with the other lovely people she bonded together (those I know and those I don’t yet know) as together we journey further down the road. Where I know she is keeping the light on for us all. Shining fiercely. Showing us the way.

______

For a small insight into her thoughts on how to improve things, please see Pip’s May 2018 statement in Parliament here, starting on page 13 for her outline of what needs to be done to better support women and to bring about change in the UK.

Pip Williams was born 23 August 1963 and died 1 February 2019. A celebration of her life was held 26 April 2019. This was written the morning after the celebration.