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.

 

Where’s Our Empathy for Those with FASD?

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

 

[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?

Slow It Down and Listen

By SB_FASD

The phone was broken.

Trainers were hurled against the bedroom door.

The day had been building to this. The car fuel warning light had pinged on. Traffic was heavier than usual. It was too cold outside. His finger was sore where he had bitten it. The car was rubbish. The queue in Subway was too long. He wanted to go home. Now.

The week had been building to this. School was boring. There’s too much writing. A teacher was out ill. His tummy was hurting. He doesn’t want to go back to school for one whole week. He needs a break. Two weeks. The pogo stick is too small. His toenails are curved. The unicorn cupcake tastes like washing up liquid.

There had been an incident two days prior where someone he didn’t know tried to contact him via his phone. It led to a concerning scene that ended up with his dad, me and the head of year in the deputy head teacher’s office, all praising him for doing exactly what he’d been taught to do. He had told a teacher. He hadn’t returned the call. The incident was – we think – benign, but it had scared him and us. This phone had caused angst this week. He hadn’t tried to break it. It had dropped. A few times over a few days. The screen was dead. He was beyond coping with it. With anything.

We were there, in this moment. The phone was really and truly dead. We were home alone, just he and I. I was tired. Really mentally and physically done in. It was the first day I had been out, shopping, in more than a month since having had the plague.

I started down the wrong path. “What do you want from me? (said with a bit too much oomph) I’m sorry the phone is broken. But WHAT do you want me to do?” Those eyes ready to crumble caught mine.

And I stopped. Quickly. I had voices in my head. Voices of adults with FASD who have over years helped me to see this scene from another viewpoint.

I swallowed my frustration. I forgot about the money. I forgot about the warnings I had given about needing a better phone case.

I just sat down by him, silent. Quiet until I was ready.

I gave him a hug. To his rambling, steady stream of barely connected thoughts and anxieties about how he should never have a phone, he can’t be trusted with a phone, they’re all rubbish anyway, he shouldn’t have a phone until he’s 20, I just said,

“It’s okay. You’re okay. I love you.”

I offered to give him a foot rub with lotion. I saw he was frantically scanning the room and everything he was seeing was upsetting him. I wasn’t sure more things would not soon be flying. I was in my head trying to think of who I could call because I knew this night, this night I might not be able to handle this. I was frazzled and still slightly ill. I felt my self-pity rising. I started wallowing in it, feeling it was unfair that once again it was me having to defuse yet another situation. It was borderline at this moment. I suppressed my rising distress. I narrowed us down so we both could forget all the rest of it. I needed to get my head on straight.

I asked him to close his eyes and just to concentrate on his feet. I rubbed his heals. I know he likes that. I added more lotion, warmed up in my hands first. I didn’t say anything more for several minutes.

Our heart rates slowed. The stream of unintended words had stopped. We were just there. In the moment.

Finally after the tension had melted a bit, I suggested we go sit on the bed in my room and watch a favourite movie. It reminded me how long it had been since we had done this, side by side, close.

He had brought some journals into the room with him. I wasn’t paying close attention. He opened one. I was still fiddling with the remote, trying to get the movie started. I was, if I am honest, desperate for an electronic solution to the evening’s tension. He put the booklet directly under my nose. This was important to him. The movie wasn’t the point here.

Again, I slowed down. I shut up. I listened.

I looked closely. I recognised it. It was an old home-school diary, the one with the rainbow cover. We haven’t used this in well over a year, with a different teacher, a different Key Stage. He had remembered he still had it. He opened it to a blank page, instructed me to pick up a pen, to write a big “2019” on top of the page. He told me he wanted me to write to his teacher. He told me what he wanted it to say.

He hasn’t been having his sensory breaks at school. He needs them. He feels like the rules have changed, he is not allowed to go to the sensory room this year. He wants to know why. When I said the teachers tell me he is allowed, he was insistent. They are NOT letting me go, Mum. (Listen to what he is saying, I told myself. This is important.) He told me he loses house points if he goes out of lessons. (What?!? But I stay silent, I listen, I write, and I plan the next email to the school in my head.) He misses the time when he gets to relax during the day with the school dogs. He feels like it’s all too much sitting.  Too much writing. He said it is just like his old mainstream school. It’s changed at this specialist school. He can’t handle it. He doesn’t want to go.

I wrote it all down, increasingly amazed at the moment that was unfolding.

He was using his words. He was using the tools he knows that are available (tools I had forgotten) to express his needs. He was instructing me in how to advocate for him. Somehow, in his non-linear way, he was showing me the root of all that had happened today, this week. The cause of his escalating anxieties, the reason why our house has become increasingly tense over recent weeks.There is a reason.

There is always a reason. Sometimes many.

I seem to have to learn this lesson again and again and again.

Meanwhile, after we put the diary down, after he tucked into a tray full of his favourite snacks, I snuck a peak at my phone. There was a ‘situation’ heating up in an online group. An adult with FASD was expressing raw frustration over the way parents and carers too often vent their frustration in support groups. It was reminding me with sadness of recent comments and posts I have seen. One adult with FASD said (I paraphrase), “We know what people think of us. We know. We internalise that every day. We need our parents to be our safe haven.”

I vowed once again to always try my best to listen to what my son is saying to me, to always speak with him and about him with respect.

Everyone with FASD is the primary expert in themselves.

We need to be the experts in listening to those we love and sometimes in serving as their translators. Because, even if sometimes a person with FASD – big or small – might be unable to form the words and sentences in polite ways or in pretty paragraphs that help us ‘get it’, there are many ways different actions, behaviours, anxieties and sensory issues show us hints that there is something we need to understand better.

Like, say, when unicorn cupcakes taste like washing up liquid.

The best, most effective thing we can do sometimes is simply slow it down and listen.

 

A Dream to Help Me Cope With Anything

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.