25 Years After My Mom Died

Blog 12 May.png

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 12th. 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

Blog Pip

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.

 

Take Care

Blog_TakeCare4

By MB_FASD (and a side note from SB_FASD)

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

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

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

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

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

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

I did nothing.

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

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

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

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

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

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

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

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

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

Take care.

*********

A note from SB

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

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

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

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

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

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

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

SaveSave

SaveSave

Our Nine Million Moments of Marriage

Blog_Anniversary

This post also appeared in the Huffington Post UK.

By SB_FASD

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

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

We said we did.

And we are.

But it’s not easy.

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

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

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

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

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

We put out fires.

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

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

We are constantly trying to calm the seas.

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

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

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

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

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

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

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

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

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

 


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

 

 

 

 

 

 

 

 

SaveSave

SaveSave

SaveSave

SaveSave

RIP Sir Noel, The Christmas Dog – An FASD Love Story

Blog_SirNoel
By SB_FASD

[Note: this post also was featured in the Huffington Post UK]

Once in a while you encounter a being so pure that you simply have to believe.

Four years ago, our youngest son was struggling.  He was in Year 5. At great cost to himself he gave everything he had at school, at home, in clubs. But he walked every day in world that didn’t understand him. None of us understood yet that his behaviours were symptoms of undiagnosed brain damage caused by prenatal exposure to alcohol.

He asked and he asked for a dog. He wanted a friend. Someone who would be by his side. No questions asked.  No demands.  He needed one sure and faithful friend.

Unbeknownst to us (though it later filtered back), he asked Father Christmas for a dog at the school fete. He asked for a dog that wouldn’t “bark, whine or whinge.”  (No pressure there!) It was a difficult decision. If we got a dog and it didn’t work out, it could potentially have a devastating impact on him.

Father Christmas sent our son a special letter that arrived on our doorstep on Thanksgiving Day while our British-American home was full of guests. Father Christmas had found a dog he wanted our family to go meet.

The dog’s name, I kid you not, was Noel.

Our little one was barely able to contain himself when we met Noel, a five-year old Cavalier King Charles Spaniel.  Noel’s first action was to lay down to have his tummy rubbed. The grins of that day will stay with me forever.  Our eldest was “euphoric”.  (He was about to embark on a multi-year battle with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis but we did not yet know that then.  Noel would be near him on many a day when he was unable to get dressed and go to school, but that is getting ahead of our story.)

We are a family built by adoption (my husband was adopted and we adopted our youngest son). We knew without doubt we had found our newest family member.  He was ill.  He had been rescued from doggie death row in Ireland.  Like our son, he was traumatized by his experiences.  He was compliant, but not beaten.  His spirit was intact.

And … he was silent.  (Just as our son had been when we adopted him at sixteen months.)

Like some scene from Miracle on 34th Street, Father Christmas somehow knew exactly the right dog to send to our home.  Maybe he knew that we were about to enter some very, very difficult days.  Years of them, actually.

Our youngest son was diagnosed with a Foetal Alcohol Spectrum Disorder (FASD) the following spring. We found out that our son not only had the sensory issues and learning delays that we knew came from his early traumatic experiences, but underlying all of this the connections between different parts of his brain had been damaged before he drew his first breath.  He will forever have problems with executive functioning, abstract thinking, impulse control, adaptive planning. What makes sense to others won’t always add up for our little one. Into Year Six and Year Seven his school life became increasingly torturous.  He kept himself together at school and then bam!  He would explode at home like a can of soda that had been shaken all day and was primed and ready to burst.

Our house was the scene over a couple of years of sometimes spectacular meltdowns.  When our youngest’s brain was overwhelmed the fight and flight instinct would become all-consuming and powerful. He was not coping.  Worse, as he entered puberty, his behaviours were escalating. He started refusing school.  Regressing. He was confused and cornered. It was a nightmarish time. Heart wrenching. He was starting to run away.  He had taken candy from shops. He was fixated on lighters.  When you live it, you don’t always see how these things can creep up over time.

When things would heat up at home, we learned our own little family ballet. Our eldest would put on headphones and block it out via computer games.  Noel would be put out in the garden or in the kitchen where patiently, he’d wait.  My husband and I would tag team, sometimes more successfully than others. These distressing moments would come crashing down around us.

When it was over, Noel would go up to our son, tail wagging, ready for the healing. The first apologies were always for Noel.  How many tears were cried onto that Blenheim coat.  How many hugs he had.

Sometimes our youngest would speak through Noel.  He’d say (in a Noel voice), “Don’t hit Mummy, she loves you.”  “Stop throwing things, they will break.”  “Don’t say mean things, it’s not nice.” “Go to your calm space.”  We are learning about the whole “theory of mind” thing. For sure, Noel helped our son see the world through different eyes.

Our whole family needed this little fur ball. The walks along the river, through the field. The cuddles on the couch.  The impromptu games of fetch in the garden. The big, uncomplicated brown eyes staring up into ours when we too needed a constant in a tumultuous world that could change moment to moment.

He was our shin-high reminder to slow down and just let the positives wash over us.  Our very own walking embodiment of mindfulness.  Noel was our regulator.

As a family, we grew.  We learned techniques and strategies to support our youngest. He learned words like ‘dysregulated’ and became conversant on stress toys and calm spots and neurons that have trouble talking to each other.  We built a support network in our area.  Now there is an FASD Club for other children just like him.  He is not so alone anymore, not so misunderstood.

Critically, one year ago he moved into a specialist school where he is cognitively supported and where they have lots of sensory outlets for him to help him self-regulate (including school dogs).  We have found the right medication to help him focus.  His meltdowns have almost entirely stopped.  We seem as a family to be entering a better place.  Our youngest is more even, calmer, more comfortable in his own skin – though of course we have the teenage years ahead.  Our eldest has come through the worst of his CFS/ME (knock on wood).  I changed from a very stressful job with lots of international travel to one where I now work full-time on raising awareness of and support for those with FASD. We are all of us hopeful that things are on a safer and more settled path.

Sir Noel, the Sweet One walked with us out of the darkness to this brighter place.

Earlier this month we started to notice Noel seemed to be out of sorts.  He had been coughing.  There were visits back and forth to the vets.  Fireworks season here in England in early November really affected him.  His heart never stop racing, his breathing became laboured.

Noel was staying closer to us all – visiting our eldest in his room more often.  He was curling up with my husband more persistently. He very uncharacteristically (once) protectively snarled at the door when the postman came.  I think I knew what I was seeing.  I let him sleep curled up behind my legs for weeks.  My dad had heart problems.  I think I knew.

And so we found ourselves a bit stretched out, concerned as we entered this holiday season – the same time of year when Noel first entered our lives. This year, our youngest and I bowed out of early Thanksgiving festivities and stayed home instead.  Noel spent that day by our son’s side, curled up peacefully for hours next to him on a furry blanket. Our little one had just had a complicated hand operation, trying to give more motion and strength to a hand that had also been damaged by prenatal alcohol exposure. They needed each other that day, those two.  I am so glad they had that time.  So proud that our family had learned enough to not force our son into a social situation that he was never going to manage well. Relieved we have the confidence now to structure our lives to help meet his needs, to change the environment around him to allow him to succeed.  To focus on the positives and not let the negatives consume his whole world as they were starting to do.

The next day Noel was having more trouble. He was quietly seeking sunshine and warmth and simply standing there.  I guess some might say he was moving into the light.  Eyes locked together, that last night I fed him bits of chicken by hand when he was having trouble eating, stayed up with him in the early hours.  Bleary-eyed I went off to a meeting in London the next morning while my husband brought Noel to the vets. He was going to be escorted to an animal hospital for tests personally by the vet, who loved him too.  He died 15 minutes after my husband left.  Noel needed to be alone to let us go.  Just like my dad.

I was in a room full of medical professionals who were discussing FASD at the Royal Society of Medicine when the urgent calls and texts came. These were some leading academic experts on intellectual disabilities, but the thought flashed through my mind, could they understand this? I greatly value their insights but there is no way a book could teach this – the unquantifiable, sometimes inexplicable reality of the ups and downs of life for those living on the FASD spectrum and their families. The tectonic plates had just shifted in our little one’s world. I had to get back before our boys came home from school.  I left the experts to their PowerPoints.

Oh, what a heartbreaking conversation as our little one’s world crumbled. As he locked himself in his room blasting “The First Noel” over and over and over again.  As he called on the genies to make the wind swirl backward in a reverse tornado to bring him back.  As he panicked about whether Father Christmas might be angry that the Christmas Dog had died.  When he alarmingly said he wanted to die and go to heaven to be with Noel.  When we realized he was blaming himself, thinking Noel’s stealing of a forbidden piece of toast with cheese that had been left down low a few days ago might have brought this on.

The next day he once again used a Noel voice to say it’s okay, he had found Grad in heaven, he wasn’t alone anymore and he wouldn’t leave his side.  That he had found a whole field of Greenies (his favourite treat).  Our son was thinking abstractly, and Noel was helping him still to find his way forward. But there is a hole, a huge gaping hole in our little one’s world. It’s one thing to say that love never dies, but another thing entirely to process it.

We are a family that believes in Christmas magic.  While initially we were thinking it would be better to wait before finding another four-legged companion, we realised that due to our son’s perseveration, the way he can sometimes fixate on things, this space needs to be filled.

And, wouldn’t you know it.  A sweet puppy named Joy (I am not making this up – I couldn’t make this up) is coming into our lives in a couple of weeks, right before Christmas. She is traveling to us from Bulgaria.  Another adoption. Father Christmas wasn’t mad at all.  He knew.

Yes, we needed a certain kind of dog to get us through these past four years, and we had the best.  Sir Noel, The Christmas Dog’s love for us and his faith in us was transformative.

But that isn’t the end of this story.

Joy will follow Noel.

 

 

 

Tears, Support and Bloody-Mindedness

Blog_TearsSupportBloodyMindedness

New! Audio recording

By SB_FASD

Yesterday was the second anniversary of the local FASD support group we set up after our son’s diagnosis of a Foetal Alcohol Spectrum Disorder.  We had several families new to the group join us.

We had nearly cancelled yesterday’s meeting. We have been stretched and pulled in too many directions lately, with the added pressures of our little one’s operation throwing an already strained house nearly over the edge.  We both left the house yesterday without our wallets, I didn’t have my phone – an indication of the mayhem that can be our lives.  And yet, two hours later we left the meeting uplifted, glad, invigorated.  Being with others who ‘get it’ does that to you.

One mum new to the group said it had taken her a long time to decide if she wanted to come to a support group because she has never done something like this before.  She reminded me of me … and the first meeting we attended in September 2015 – two months before we set up our own group.

I wrote then, “It is not easy to come forward and to say you or your family need help, that you can’t do it alone, that you need support.  I have always failed those trust tests where you are supposed to fall back and let others catch you. I didn’t know what to expect. I didn’t want to hear more bad news… And yes, as I had dreaded, it was … a room that held some of my worst nightmares – those things you fear for your child when you lay awake, trying to suppress the panic. The vulnerability of our kids laid bare.  Prison. Sexual violence. Isolation. Ostracism. Self harm. Rejection. And yet, there it was–the mind-blowing and inspiring resilience of people whose loved ones have suffered through those worst things of all. They were saying, ‘We’re still here, we’re still fighting, and look! Our kids are not only progressing, they are doing well.’  You can come through even great darkness to the other side.  I never thought to face down those fears.”

I felt the power of the journey again yesterday as in our imperfect way, our group was bridging those who are in crisis, those whose children are recently diagnosed, and those who have been in crisis but whose lives have entered a calmer period.  The polite go-round where everyone gave the most basic of facts about their families, followed by the raw versions as we delved deeper into discussion.  Fears. Tears. Frustration. Anger. People who try so hard to do right by their little ones, but who can’t find the support, can’t find the professionals willing to help. The dismay at the lack of understanding of FASD and what this precious time being wasted means to our young ones and their families.  It makes you so sick to hear story after story, to know these realities are multiplied by the thousands across the country.  To know that there is proof of what can help but the professionals (not all) in their arrogance (some), in their lack of training (most), in their over-stretched and under-resourced structures in which they work (all), refuse to go that extra step.  To know that even in places like our local area where there are professionals who want to do more and who have the training to do more, even then The System sometimes takes away their ability to act for short-sighted or ill-informed reasons.  That System fails us – and leaves a lonely mum at wit’s end crying silently-strong, but at a loss for how to move forward when every single door gets slammed in her face, and as she sees her lovely child start to crack under the weight of the pressures being put upon him. It is quite simply heartbreaking.  And so unfair.

Families across the UK say they wish they had a support.  I wish they did too.  This situation is outrageous, cruel and dehumanizing.  The System certainly steps up fast enough when a young person goes off the rails.   They find the resources to toss them in a high-cost prison, but refuse to provide funds to diagnose and help support those with brain damage/brain injury at the formative time in their lives.  They cut services, benefits and then come down hard when someone can’t pay rent.  The System waits until good people are at breaking point or until after something is broken irretrievably before thinking the situation is bad enough to trigger the services and support that are critical.

No one, NO ONE will EVER be able to justify that to me.

It simply must change.  Our kids shouldn’t have to break before The System sees them.

That said, don’t wait.  If you don’t have support, you can build it. You don’t need to be an expert. You don’t need to have the answers.  You don’t need to be an experienced organizer. You just need a room, some people, and a belief that sharing this journey with others will help you all – a belief that ‘together we are stronger’.  Here’s how we did it.*

Be patient with yourself.  it can take time to wrap your head around it all.  We went into a kind of depression after our son received his diagnosis in spring 2014.  We didn’t really grasp the full impact of it. We received a huge 60-page report the following spring 2015. We first started by educating ourselves, and then a tight-knit group of family, friends, our son’s school.  It was not until Autumn 2015 that we attended our first support group meeting organized by NOFAS-UK and a couple months later set up our local group.

Who knew then just how much this would change our lives?

At our meeting yesterday people said they were holding back, trying to be ‘polite.’

I humbly suggest, let’s stop being polite.  Let’s stay positive.  Let’s tell it like it is.  Let’s make some noise.  Call a local radio station, call a local paper.

Let’s make life uneasy for every bureaucrat who takes the file of a person with FASD and puts it on the ‘not for action until this one breaks too’ pile.

Let’s let love and bloody-mindedness drive us toward the future we know is possible, the future our loved ones deserve.  The brighter future we insist upon because we have hope.

Yes, some days are hard.  Very hard indeed.  Yes, we can provide peer-to-peer support for each other.  Yes, we can raise awareness.  Yes, we can spread the information and strategies.  But at the end of the day there are elected officials in this country responsible for the well-being of people with disabilities, responsible for young people in care and those who are adopted, responsible for ensuring that those with special needs are receiving the education to which they are entitled by law, responsible for the mental health and well-being of our young people and pregnant women, responsible for ensuring adequate diagnosis and medical care is provided to the most vulnerable in our society.

Sadly, it’s up to us to insist that all of these people Do. Their. Bloody. Jobs.

*********

* For those in the UK, the FASD UK Alliance has online support and people like us who have set up groups in various ways across the UK who would be willing to help talk you through setting up local support.  For those elsewhere there are networks all around the world.  Google! Or send us a message and we will try to help you find a national or local group.

For an insightful overview of the brain-based issues and some strategies, please watch this video by Dr Cassie Jackson from a NOFAS-UK FASD Wellbeing Workshop.  For materials for schools, please see the Teaching a Student With FASD handout, also from NOFAS-UK.

 

 

Raising a Child With FASD Has Made Us A Stronger Couple

Blog_BirthdayCard
By SB_FASD

Today is my husband’s birthday. He bought his own presents.  He didn’t wake up to coffee in bed. There was nothing – I didn’t even manage to wrap the presents he had sent to himself via Amazon.  Really, it doesn’t get more pathetic than this.  But I have my excuses.  We were at the school yesterday for a couple of hours.  Our son has been home half days because he is struggling in this post-operative week.  As a result, we have been juggling work commitments, balancing the needs of our elder son (who has Chronic Fatigue Syndrome/ME), and – I kid you not – a dog with a concerning cough.  Life is – as usual – happening fast and furious. We are as ever facing our days left-footed.

I explained to my husband yesterday that I needed more time to wrap things, that I hadn’t actually managed to do anything to make his day special.  He smiled at me and gave me a hug.

That’s when the thought struck me – this FASD journey affects our expectations of each other too.  We have all had to change the way we look at this world.  It is not just about changing how we interact with our son with FASD.  It is also how we interact with each other.

FASD has been brutal on our marriage.  The unpredictable flare ups.  The chaos.  The what-on-earth-do-we-do-now moments.  The concern.  The defensiveness. The tiredness.  The stresses. The depression.  The alternating moments of determination and fatigue.  The feeling that whatever we do is never quite good enough.

The times when we have entirely different instincts on how to handle a situation.  The times when we hit a wall and need to shout, and rather than yelling at a little one, we aim those words at each other because that’s the ‘best’ option in a horrid situation.

Yes, FASD can tear at relationships.  Like water dripping on solid rock, each of these tense moments leaves its mark even on the strongest of relationships.

And yet, here we are.  We’re still standing.  Somehow.  And we are better than we were before.  Perhaps not as obviously shiny and happy as we once were in those days when we were courting.  We were an older couple to start with.  Maybe because we weren’t kids ourselves, we have always been grounded.  Though once upon a time we were carefree enough to hop on airplanes with the blink of an eye to meet each other, to visit others.  We had flexibility and funds.  We were living the life.

Children were a precondition.  I remember standing on a bridge early in our romance, laying it out – saying although it was awkward – that I had to know if he saw children in his future.  I was in my mid-30s.  I was confident enough not to delude myself that this was a question that could wait.  I will never forget the feeling of elation I had when I realized he too wanted children, a family.  We were engaged soon after.  We even talked about adoption at that point (before we had trouble conceiving our first child, including a horrible possible ectopic pregnancy/miscarriage, before the frustrating infertility when it came time to try for our second).  My husband is adopted.  I always said I would adopt one child for every child I gave birth to.  It seemed natural for us to complete our family via adoption.

We had already decided we could raise a child with disabilities when we refused the tests during my pregnancy, despite knowing we were in a high-risk category.  We didn’t shy away when we realized early on that our adopted son was likely to have developmental issues.  We knew, or thought we knew, what we were getting into even if it would take several years for our son to be diagnosed with FASD.

But did we know then how our social life would erode?  How those lovely meals out and trips to the movies, to the theatre would evaporate?  Did we know we would be so bone tired every night we could barely decide which TV show to put on, forget about long meals laughing over candle light like we used to?  Did we know that we would stop traveling together, that our health would deteriorate, that we would take such shortcuts with each other?

There was no way we could have known.

But I am not writing this as a downer.  I am writing this because of the beauty of the moment yesterday, when I told my husband I hadn’t managed to get him a card nor had I even wrapped the presents he bought for himself for his birthday.  That moment when he understood.  That closeness that we have that goes beyond the flirtations of a night out on the town.  That hug by the coffee pot this morning when he jokingly asked where his presents were.

We have always said that we will be great sitting in our old-age rocking chairs side by side, making snide remarks about the state of world affairs.  We are becoming people, through this journey, that we never knew we could be – deeper, more ‘real’, more compassionate, more questioning of ourselves and our expectations than we might ever have imagined.

We have been washed over by a love that is stronger than we could have envisioned – fierce in its protectiveness of our children.  We have learned as a couple to find sustenance in the awe that we share of our two amazing children who show us every day what courage is, what it means to face this world bravely and with dignity.

As a community we probably don’t talk enough about the toll that FASD can take on family relationships and on marriages in particular.  I am writing from the perspective of adoptive parents, but every single family relationship can be stretched – especially if FASD is not understood, if the strategies are not taken on board.

It isn’t easy, but we are better people together and individually because of this path we are walking.  Our marriage is stronger for this journey.  We make accommodations every day, not just for our son with FASD, but for each member of the family.  In learning that patience and compassion, hopefully we are growing into the kind of adults we always wished there might be in this world.

Happy birthday to my better half.  Maybe I didn’t get you a card, but here is a blog post instead.

Lower the Drawbridge

 

Blog VulnerabilityBy SB

Vulnerability.  I hate that word – everything about it.  I run from it. I build walls – miles-high at times – in case anyone might see me vulnerable.

I was brought up by a Scottish-American mother, a force of nature.  I was taught and conditioned to be a strong woman.  I am meant to be In Control and On Top of Things.  This is lifelong and forever because A Mother’s Work Is Never Done.  If something is broken, I am supposed to Fix It.  If something hurts, I am supposed to Kiss It and Make It Better.  I am supposed to have Eyes In The Back of My Head.  If I am having trouble and I am supposed to Pull Myself Up By My Bootstraps.  I am supposed to Cry In The Shower So No One Knows.  As a mother, I am only as Happy As My Saddest Child.  A Clean and Orderly Home Is A Happy Home.  I am supposed to Rule My House with Firmness.  My family is supposed to be My Greatest Work.

You get the point.

I have a constant stream of these messages playing in my head.  They are from an earlier time, a time why my own mother was a stay at home mom in a house of relative ease, with no major issues.  These messages don’t really translate to this life I am living now, raising a child with FASD.  Yet they play over and over and over and over again in my head, every day.  This internal soundtrack sometimes becomes my own worst enemy.  It happened this week, when we were preparing for a home visit from one of the therapeutic services we have finally been able to access.

Family matters are meant to be personal.  We are supposed to Keep Our Business To Ourselves.  If something isn’t quite perfect, we should Sweep It Under the Carpet and Put Our Best Foot Forward.  We are supposed to Show The World Our Smile.

That’s awfully hard to do when your windows are open and all hell is breaking loose, things crashing, a string of expletives coming from a child who is not even supposed to know such words exist.

That is awfully hard to do when you are sitting in yet another appointment, explaining yet again in painful detail about bizarre and concerning behaviours of your child, the details of how you cope, or don’t cope. Discussing the argument you and your spouse had or the time you did it all wrong.

It’s impossible to do as you swing open the door to your home and let in another visitor to observe, wondering if they will notice some doors are actually literally partially unhinged?  When you are feeling kind of good that you noticed and cleaned the dried spit on a glass pane before they arrived, but you are aware there might be other pockets of concern somewhere within view once they arrive.  And while the major puffballs of fur have been recently attacked by the last-minute vacuuming, you are all too well aware you still haven’t got to the root of what you fear is a pervasive smell of Dog.  It’s no longer possible to find every splat of dried bubbles that might have hit the walls or ceiling in the bathroom.  That ship has sailed and let’s be honest, you gave up trying a long time ago.  On the level of biohazards that might exist in your home, stray soap is not on the list of the worst offenders.  Far, far, FAR from it.  You just changed sheets (score one for the home team) so you are pretty sure there will be no food surprises under the covers, should she end up in the bedroom being shown how many flips can be done on the bed (with pulled-back covers).  But still you breathe a sigh of relief when in fact she was shown this trick and nothing fermenting was uncovered or smelled despite the recent episode with the bottle of spilled pickled onions that soaked through the mattress.

No, this home life isn’t at all what you had planned.

There is a tendency to hold back, hold it in.  You know people think you “over share” when you start to tell some story about some thing that is not typical, not the “norm.”  You see their faces take on that “try not to show you are shocked/surprised/repulsed/out of your depth” look.  You have to trust that they will listen and not just take away the more sensational headlines – just like the news media does nearly every single time they cover the lives of people with FASD.

Yes, it’s different.  Yes, it’s hard.  And yes, it is, in fact, your life.

So you have a choice.  You keep that smile on your face while you put your best foot forward and eventually walk right smack into a wall.  Because you will – it is impossible to act like it’s Business As Usual without eventually hitting a wall.  You know this, because you have already been there, done that.

The reality is, you need help.  More importantly your child needs help – will ALWAYS need help (even when you are not here).  By pretending it’s all okay, you are depriving your child the chance at his or her best possible outcome.  They have to learn to ask for help.  They will have to lean on others and let people into a messy and chaotic world.  They will have to TRUST that others care more about them then the state of their house.  They have learn that it’s okay to be imperfect.  And they will learn that lesson by watching you, by repeating whatever mantra it is that is the narrative in your own home.  You have to forget about your mother’s house and focus on the home you have.

That’s where it gets real.  That’s where the vulnerability comes in.  To help your own child, you need to break down those walls, let others see you at your worst.  Despite everything you were trained to do, whatever rulebook you have inherited, you have to shed those expectations.  You must show your vulnerabilities again and again to a too often unkind and uncaring world.

Because out there in that crowd, there are people who can help, people who can understand, people whose bubble splats are up there on the ceiling too.  They will be there, hidden among too many who might not be helpful and who might in fact be judgemental.  You need to armour up and go looking anyway.  You will never find those people your family needs hiding behind the illusion that everything is “normal.”

And the reality is – there’s no such thing as “normal” anyway. We need to teach our kids to love themselves as they are.  That starts with us taking that first step – loving ourselves and celebrating our lives as they are too.

“Welcome to my world” – how many times I have said that as my mother would have, tongue in cheek, self-depracating.  But “welcome to my world” can also be a positive statement of affirmation and a doorway to the future for our children.

Because really, my world is pretty darn amazing too – for those willing to look past the unidentified marks on the walls.  Our house and its striving, growing, messy, manic, chaotic swirl of emotions and movement is a place of love.  And Home is Where The Heart Is.  And Every Man’s (and Woman’s) Home Is a Castle.  I will let down the drawbridge if it means letting in the supplies and help and support that we need, admitting that It Takes A Village to Raise a Child. Showing our children that it’s okay to be who we are.

So, welcome…

 

 

 

 

 

A Timely Reminder About Dysregulation & FASD

Blog Dysregulated.png

By @FASD_Dad

Today wasn’t the best day. And I made it worse. We know our son doesn’t do well with multiple activities in the day. I know that when he starts to become dysregulated we have to do the work to keep things calm, quiet and to make the environment the best it can be to help him regulate himself.

Today, I didn’t do that. Today, when he was getting more and more dysregulated because he didn’t want to go out, I made it worse. I let his stress and tension communicate itself to me, reflected it back at him and made his downward dysregulation spiral worse. So instead of getting down to his level and talking calmly with him; or just backing off and letting the meltdown stop, I did all the wrong things. I told him we had to go. I told him he had to put his shoes on now. I told him we were going to be late to see his friend dancing. I made it SO much worse.

We had flying shoes. We had slamming doors. We had curses and yelling.  We had tensions between Mum and Dad. And I just couldn’t deal with it. My stress became his stress because I didn’t use the techniques we have learned.  The five minutes we needed to get out of the door became 30 minutes, 40 minutes. Eventually, in his room, all alone, the dysregulation and his meltdown slowed and stopped. Stopped enough that we could deflect. Get back on track. Restore some calm to the day, to his mind, to him.

And in the time that followed, we got a reminder. Several people at the big FASD conference happening in Vancouver tweeted this slide from a presentation*

Dysregulation

  • Sensory dysregulation interferes with child’s ability to access and apply strengths on demand
  • BUT FASD = neurologically dysregulated in more than one area of brain function
  • Therefore dependent upon the external environment to provide any regulation, especially under stress
  • “External Brain” at all times and in all settings to ensure safety and success
  • Dysregulation also ensures that behaviour is more reactive than intentional

“The ‘external brain’ needed at all times and in all settings to ensure safety and success” – well, we know that but it didn’t work today. I was the external brain and instead of ensuring safety and success, I had my own little flip out. I couldn’t keep it together. The stresses and strains got to me and I let my son down when he needed me.

His behaviour was indeed reactive, and he was reacting to me projecting stress on to him. His brain, unable to process, got stuck in the moment and I didn’t help him out of it.

This slide was a great reminder. He needs us to be calm and stable, even when he is repeatedly aiming a string of choice vocabulary at us. Even when his shoes are flying. Even when he’s lashing out. He needs us especially then. As the slide points out. As I already knew, and could not act on.

So thanks to @EMcWilliamsHew2 for tweeting the slide. Thanks to the presenters who wrote the slide. It was a good reminder.

I’m not beating myself up too much. We all get tired. We all make mistakes. We all are under stress and have times when our actions and reactions are not what they should be. I did turn it around. I got him to put his shoes on and get in the car to go swimming. He had almost two hours of physical activity and joy in the pool. That’s what he needed to relax himself, to get back to a good place. In the car on the way there, he quietly explained this was what he wanted, that he didn’t want to go and sit and watch dancing – although he would have liked to do dancing. So often, he tells us what he needs in different ways, and sometimes, like today, we don’t hear that.

He did miss his friend dancing, but there’ll be other times. We’ll make sure the day is prepared better next time, and he’s in a place where he can access the dance show, where that’s what he wants to go to.

But, I do have to remember. He needs me when he needs me, not when I’m ready to be needed. That’s my take-away from today. I’ll do better next time.

———-

* The presentation was “Including Sensory Dysregulation in Every Diagnosis of FASD” by L.Scott, L.Elliot, L. Wahabe (PEEL Program in Ontario) at the 7th International Conference on Fetal Alcohol Spectrum Disorder, 3 March 2017

Prenatal Alcohol Exposure Damages Bones Too

blog-bonesBy SB_FASD

There are not many days when we dwell in that place.  Maybe you know it: the place where we are forced to imagine our loved one floating in the womb when the alcohol pulsed through his developing system.  The place where we are forced to think very concretely about what parts of his body were damaged and when.  We were standing before a 2-foot tall x-ray viewing screen at the Royal National Orthopaedic Hospital.  Somehow it’s different seeing it on screen, in black and white.  Suddenly, it’s not a “hidden” disability.  This, this is visible.

When he was little we found out he has some fused ribs.  That knowledge didn’t really sink in.  We just thought it was curious, absorbed the advice that he cannot play contact sports, and moved on.  For years in the bath I used to get frustrated he would not put his head back to wash out the shampoo.  Then we learned he has fused vertebrae and cannot put his head back.  After that news, we were relieved to hear it is okay for him to do gymnastics (since we probably could not stop him from flipping and jumping anyway), and moved on.  And here we are, a few more years later, staring at another huge screen once again, looking at more x-rays, more irrefutable damage.

He is more tolerant of these appointments now.  Because of an NHS record screw-up, and despite having had x-rays a few weeks ago, he sat for them again, resigned to it, even after I had promised he would not have to do that today. (Years ago he became dysregulated when he was having his ribs x-rayed we had to leave in full meltdown and return to have them done under sedation).  In fact, he’s a little too comfortable in the setting, I thought, as I watched him skipping ahead of us, dancing and twirling down a long hospital corridor.  I felt sad, a weight in my stomach.  This child so full of life has spent too much time in too many hospitals.

At the beginning of the appointment we were seen by the young registrar.  Now, x-rays in hand, we had a full team in the room giving us the results.  I forced myself to look at that screen and tried to see the “good” news they were showing us.  I tried to forget the obvious point that his right thumb is one-third the size of his left thumb and I tried to follow along with the reasoning that we were celebrating the fact this tiny joint was there at all and it is “stable”.  I know these doctors have seen worse, were prepared for worse, and I AM thankful.

And yet, the fact remains he has limited movement of one thumb. In the scheme of things, it’s not life limiting.  But to a budding musician…it matters.  To a 12-year-old who cannot yet tie shoes…it matters.  To a kid who frustrates easily and who has to use his teeth to open some things…it matters.  They tell us it’s possible a plastic surgeon might help.  We shall see.  More medical appointments are being scheduled.  It seems never-ending.  Because it is.

This is – and will be – his life.

I AM thankful, but simultaneously I tried to swallow down that internal scream I felt rising.  What happened to this poor child? I just wanted to shout it.  How is it possible so much of his system was so affected even before he first took a breath?  Look!  People, look!  Don’t you see?  The damage done is brutal.

And the nearly paralyzing thought: if this is what his bones look like, if even the hardest parts of his body were affected like this…what it did to that soft matter in his brain?  His tiny little growing brain never had a chance.

It was jolting, seeing the bone damage and having one of the UK’s top pediatric orthopedic surgeons talking compassionately while casually confirming what the doctors haven’t really said out loud before (as the other bone issues were found before his FASD diagnosis): this is all related to prenatal alcohol exposure.

Hearing it knocked the wind out of me in a way I haven’t felt in a long while.

Of course, I have known it.  But here it was on screen.  Alcohol was toxic enough to alter the development of his skeleton.  Think about that.

I don’t want to take that in stride.

This defenseless developing person-to-be had no chance to ward off the danger he faced there in the place where he was supposed to be safest.  Now for the rest of his life he will have to fight to be understood.  He will have to fight for his place in this world, in our schools, in our society.  He will have to fight to understand himself.   I felt guilt for feeling frustrated with him sometimes.  For forgetting in the heat of the moment.  For sometimes losing my compassion.  But on this day, I could not look away.  If this is what happened to his bones, what happened inside his head?  Was it panic rising inside me?

I got a bit pushy.  I asked if we were seeing the whole picture yet – or are we going to discover some other skeletal issue in another few years?  Were there other possible issues that we have yet to uncover? Are we looking at the whole child?  To his credit, this very senior doctor had our son jump up onto the table.  He checked his legs, feet and hips for us right then.  A kind nurse whispered in my ears, “If he can walk on his heels with his toes up in the air, it means the structure is ok.  He wouldn’t be able to do that if there was a problem.”  Our son had recently been complaining about his “rubbish right side” when he had trouble learning how to use Heelys.  We had been stunned to hear he thinks of his body in these terms.  It was a relief to know the leg/feet problems are again likely muscle-related and not structural, though it doesn’t make it any less real for our little gymnast.  It doesn’t make his self-perception and frustration any less real.

I became confused when we were asked about follow-up care that is not scheduled regarding the fused vertebrae.  My mind flashed forward, thinking of future possible complications he may face.  My husband and I were barely taking this all in, and we are good at these appointments.  We have had lots of practice.

The professionals had walked out of the room, and our son not surprisingly was sitting looking a bit bewildered.  We had to explain it now in terms that he could understand.  “Remember we have talked about FASD?”  A nod.  “That means when you were in your birth mummy’s tummy she drank alcohol.  Remember?” A nod. (Grasping for the words that don’t get easier to say…)  “Alcohol causes problems for some babies when they are in their mummies’ tummies.  That’s why your hand is different.  It can hurt bones, and it can make some brains grow differently.”  A nod.  “Everybody’s different.  It’s okay to be different.”  More nods, with a “my hand is rubbish” thrown in.  “It’s good that now we know your hand has the right bones in it, and we will see if another doctor can help you be able to use it better.  Isn’t that nice that they have had such good news today?”  A nod.  I felt a little dishonest.  (Not that long ago we were in another doctor’s office, an endocrinologist, assuring him it was good news that he would grow to be at least 5’6″ tall.  And it was. But he shouldn’t have to be grasping at these straws.)

When they came back into the room, I cringed as the senior consultant dictated a letter into a recorder in front of our son.  He used the terms “deformities” and “abnormalities” repeatedly.  The scream inside me grew.  I wanted to interrupt but I didn’t want to mess up his recording.  We usually are quite strict about getting our son out of the room so he doesn’t get overwhelmed by too much lingo.  It’s getting harder as he gets older.  Later (hoping our son had not caught this terminology), I held back to correct the record with the registrar – no we are not foster parents, we are adoptive parents.

We had envisioned a quick visit, but had been in the hospital now for hours and hours.  The waiting room had one obnoxiously loud toy that spat out balls that kept flinging everywhere and a train table with wooden tracks that did not fit in the space.  This manic, frustrating play was a perfect storm brewing, even as my inner disquiet was growing.  I had finally been quite direct with them, saying our son has a disability, his meds would soon wear off, and was there any way to help us get out of there as soon as possible. We knew would be a very difficult car ride home, and it was.  It’s now developed in his head that after a particularly intensive hospital visit he deserves a “treat.” So we stopped in a shop despite the risks that involved for overstimulation.  Thankfully we found some scented play dough-type stuff.  He smelled that and squeezed it during the car ride.  We made it home okay-ish.

Days later, our visit to the Royal National Orthopaedic Hospital is fading again into the background noise of daily life. We are once again at the frontline, addressing the immediate issues, being pragmatic, trying to focus on the joys and steering toward productive thoughts.  Back in our can-do attitude rather than the what-has-happened-to-him mindset.  Trying to keep our heads above water during yet another half-term holiday for which we have not planned well enough.

Seeing the bones scared me, I guess.  When I think of how tenuous, fragile, and mysterious those soft neural connections are, when I remember that alcohol can affect the development of whole parts of the brain…

No one does this on purpose to a child.  But prenatal exposure to alcohol has hurt our child deeply.  It has quite literally affected him to his very core.  And he is one of the luckier ones.  It didn’t do its worst damage to him.

Yes, I suppress the scream. Then I rally.