Sandra Butcher

@sandra-butcher | contributor
I recently switched careers after nearly 30 years as an international policy wonk to become Chief Executive of the National Organisation for Foetal Alcohol Syndrome-UK. Our two sons have taught me that 'parent' is a verb. Our family is constantly learning together, we blog about our experiences at https://fasdlearningwithhope.wordpress.com
Sandra Butcher

When Socializing Is Hard as the Parent of a Medically Complex Child

I love my children and my husband, my family and my friends. I have a blessed life. I especially feel bad writing about this because I know it’s even harder for our son with a fetal alcohol spectrum disorder (FASD) who has trouble socializing for a range of reasons. I am not complaining. I am trying to explain. I have been trying to suppress my feelings for days now. It’s not anything dramatic. I almost feel a fraud. I’m not crying into my cup thinking “poor me.” It’s just this emptiness I have been feeling as the parent of a child with a neurodevelopmental disability — specifically, the parent who is more times than not the one left at home. I am the one who has dropped off chat lists. I am the one who is assumed to be unable to go somewhere. I am the one staring at the TV or computer screen again on a Friday night while our sweet son with a fetal alcohol spectrum disorder (FASD) is in his bedroom doing his multi-hour wind-down before he manages sleep. I am by default the adult who doesn’t go to the show, the drinks, the meal, the shopping excursion, the movie, the trip, the volunteer activity, the committee, the family event. I can do more to make this evening time to myself meaningful. Of course I can. I could be doing lots of things — crafts, reading, Skyping. Cleaning would be a service to humanity around here. But so often I am just so deeply tired after giving my all to the day and to an intense job that the blank stare at a mindless show is about all I can muster. The reality is I find myself feeling unfit for socializing so often anyway. On the rare times I am able to go out, I am not able to be the person I want to be. I feel the heaviness that I carry with me and I see it reflected back in the faces of those I speak with. Meanwhile, I see family and friends share their inside jokes and giggles, and I miss the younger carefree version of me who would be out most nights hanging out and having fun. I can’t tell you the last time I went out and just laughed. I try not to wallow in a negative mindset. I know I am not alone in feeling like this. It’s not comfortable to talk about negative personal feelings, as we are all supposed to put on that smiley face and not admit that there are times when this life isn’t great. Maybe by my opening up about feeling lonely and left behind, others will too. I am grateful that we are no longer facing crisis situations. We do have a lovely network of family and friends who are here for us if we need them. I have a partner who is here (and I know he is tired too). I am not really “alone,” even though I can feel lonely. If I sent out the bat signal right now, there would be people at our door and I am so deeply thankful for them. People are there if I reach out. What I am talking about is something more subtle. This withdrawal from “normal” socializing has been building over more than a decade. Maybe I am only realizing it because things around here are easing and I have the mental space to even think about it. I am becoming acutely aware of the conversations of a more diverse, rounded and full life that happen around and behind me even when I am out — as happened at a café this week when I felt lost in a sea of chatty conversation. There was this buzz of things happening, and I felt so out of step with it all. The connections have deepened between others around me, and as each year passes I am that much more disconnected. Our lives are intensely focused on the needs of a talented, loving young person with FASD who is growing into a young adult on his own time scale, in his own way. There are immediacies and worries and concerns, which are very real. When I am out with people, it seems like if I am true to my life and experiences I suddenly bring this intensity into a room and the atmosphere goes heavy. Sometimes I feel like that character in the Peanuts, Pig Pen, who always has a cloud of dust around and over him. People love and welcome Pig Pen — he’s part of the cast of characters — but they keep him at a slight distance lest that dust settle on them too. They are more relaxed when he is not there. Life as a parent/caregiver of someone with a neurodevelopmental disability like FASD can be isolating in ways big and small. That has a profound but sometimes subtly compounding effect over time. Just because a family affected by FASD may seem to be in a “good” place, doesn’t mean that it’s going smoothly or easily. It doesn’t mean the pressure is off. They are probably always worried a bit about what’s around that bend. They still need you. If you are in the wider network of someone with FASD or another neurodevelopmental disability and their parents/carers, send them a little hello. Reach out. You probably have no idea just how welcome that simple act would be.

Sandra Butcher

To the Friends Who Support Me as a Parent of a Child With a Disability

The life of parenting and caring for a child with fetal alcohol syndrome (FASD) can feel lonely. Complicated. Sometimes it can feel distressing, the self-doubt is huge. You might feel scared, overwhelmed, sad, angry, determined, depressed, discouraged, uncertain, lost, guilty, out of control, small. I have felt every single one of those emotions in the last week — quite possibly each of them every single day. Yesterday we had a local support group meeting (a group we started when none existed). It was a casual meeting, just talking with other families for two hours while our kids played together in their “FASD Club” as some of the children have started calling it –kids who normally don’t want to go out, but who look forward to this group. For us parents, it’s a kind of club, too, where we know others won’t judge, others will relate. Where a lunch with another parent of a child with FASD sitting in the rain can be natural, because our guy was having a blast in the mud and on the swings. It was rejuvenating. Even though I was bone-tired. Even though the topics can be grim. We found hope. It’s been a long week. Last night my husband and I were so tired that normally we would have crashed at an early hour. But a friend heard about the week — she insisted (took no excuses) — and had our son with FASD over for a sleep over. It allowed us to chill out, spend time with our older neurotypical son. It was low-key — we stuffed ourselves with Thai take away and Hagen-Dazs, watching a newly released DVD. Yes. I know how amazing that day may sound to those who have no support. I know we are fortunate. Too many parents are out there feeling alone. Remembering where we once were, too, and how massively different yesterday was from those early days, it got me thinking how important it is to acknowledge just how amazing a role friends can play. I take my hat off to those friends — old friends, new friends, family friends, work friends, social media friends, neighborhood friends, school gate friends, Facebook friends, dog walk friends, smile-in-the-shop friends. My heroes, they quite possibly have no idea how much they are appreciated. Here’s to the friends — the ones with the kettles and the tissues. The ones who check in regularly. The friends who actually slow down and wait for you on the street rather than sneak around the corner as if they didn’t see you. The ones who look past the bags under your eyes and tell you the color of the crumpled t-shirt suits you. The ones who make you laugh. Who let you cry. The ones who hold a seat for you at the coffee shop, knowing you might not come that day but who are ready just in case. Here’s to the friends who calmly step over the shoes as they enter your house and who look past the dog hair and the counters piled high. The ones who don’t ask what is behind the closed doors and the ones who just laugh at the laundry drying everywhere. The ones who ignore the unidentifiable smell. The ones who know where you keep the tea. Here’s to the friends who didn’t run when things got complicated. The ones who googled rather than denied. The ones who asked questions rather than dismissed what you were saying. The ones who heard your concerns behind your frustration. The ones who were confused and overwhelmed themselves but who asked rather than assumed. Here’s to the friends who open doors others slam shut. Friends who reassure rather than stress. The ones who don’t tally who is doing the talking and who is doing the listening. Here’s to the friends who believe you when you say you wish you could do “something,” but not this week, sorry not today, you can’t because something came up/you’re unable/things went haywire/it’s just one step too far on a day when there is nothing else to give. They know you’d really like to.  They don’t make you feel bad. Even when you forgot their birthday because that week there were multiple appointments/illnesses/calls from the school. Here’s to the friends who tell you when you need a break — the very remarkable few who force you to take the break, and the exceptional ones who make it possible for you to relax. Here’s to the new friends — the ones you meet through the struggle. The ones who get it instinctively, who can laugh at a situation without mocking or deriding. The ones who can give a look or a nod that says more than a speech. The ones who have walked the walk and who can still help you find the joy on the days when it’s sometimes hard to find.  The ones who help you look forward. Here’s to the friends who can carry you, prop you up, propel you forward or force you to sit — whether they’re in front of you, on the phone, or at the other end of the computer screen. Here’s to the friends — the ones who see your child. The ones who see you. The ones who are there. Here’s to you all — here’s one big, huge, poorly expressed, dreadfully tired but deeply felt “thanks.” You really have no idea how much your support means. It’s magic. It gives us what we need to gear up, buck up, stand tall and face this with hope. And by doing that, you are most importantly giving our child the best gift possible. You are helping us to help him. You are fueling our resilience. You are breaking past our sense of isolation. You are giving us hope that the community exists. It takes a village indeed; not just to raise a child, but to support a family. And you are so very, very much appreciated. So here’s to you, for those times when I might forget to say it. You’re awesome. We want to hear your story. Become a Mighty contributor here . Thinkstock image by MM Productions

Sandra Butcher

Starting Conversations About Fetal Alcohol Spectrum Disorder

Here we are again. Another study shows that the U.K. is among the top countries for drinking alcohol during pregnancy. A new Norwegian study shows that 28.5 percent of women in the U.K. drink when they know they are pregnant – placing the UK ahead of Russia (26.5 percent) and Switzerland (20.9 percent). This follows on from an earlier predictive study by the Canadian Centre for Addiction and Mental Health (CAMH) that showed more than 40 percent of pregnant women in the U.K. drink alcohol. The difference between these numbers can and will be debated by the experts. But let’s not miss the point. The implication is staggering. These figures show that entirely too many pregnancies risk damage to the brain and bones of the developing embryo or fetus. Most people are shocked to learn that fetal alcohol spectrum disorder (FASD) is considered to be more prevalent than autism. In fact, many kids with FASD are misdiagnosed as having autism. Our son was, originally. We have to reframe how we think about this issue, beyond the stigma. The Norwegian study shows that women who are older and more highly educated are more likely to drink during pregnancy. Another recent study showed that “75 percent of women who do drink during pregnancy are consuming alcohol together with a partner. Of these women, 40 percent of drinking episodes are initiated by male partners.” In a country like the U.K. where the pub culture run deep, this lack of awareness and such widespread drinking during pregnancy means that several thousand kids each year are unknowingly born with a hidden disability. They may face lifelong challenges with executive functioning – compromising their ability to think abstractly, to link cause and effect, and to process multi-step instructions. They may require additional cognitive support and find it difficult to control their impulses. Their brains may easily become overloaded by stimuli they cannot process quickly enough, causing meltdowns and in some cases violent outbursts. These kids will grow into adults whose lives can be successful, but who will require an underpinning of consistent support and understanding to help them achieve their potential. The U.K.’s response to FASD lags dangerously behind other countries, at great cost to individuals, their families and society at large. Funding for diagnosis and support can be a post-code lottery. Despite the fact that the government recently stated it is the responsibility of local Clinical Commissioning Groups to commission relevant services, far too often this responsibility is ignored, under-addressed, and/or under-funded by straining bureaucracies. This bureaucratic nightmare can be compounded by misinformation or prejudice. Families can find the process of seeking a diagnosis bewildering. They are often turned away or denied access to professionals adequately informed on FASD. Even professionals misunderstand the fact that for every child with the facial features of the more widely known fetal alcohol syndrome, experts say there may be as many as nine or 10 others out there on the spectrum with no visible sign of the disability. Parents, including courageous birth mothers who confirm drinking during pregnancy, are often discouraged from seeking a diagnosis by professionals who tell them not to “label” their child. This can deny the child and those around him or her the lens that allows a proper understanding of the whole child to unfold. Many schools remain unaware, uninformed and/or unwilling to address the needs of those with FASD. There are kids in classrooms across the U.K. who are undiagnosed, unsupported and drowning in an increasingly inflexible educational system. Recently we have seen reports that schools are cutting TA positions, that most basic of support for kids with disabilities. Denial, refusing to work with concerned families, and spouting on about inclusion while denying kids access to education to which they are entitled is quite frankly, shameful, and totally unworthy of a supposedly caring society. Families, foster care and adoption services are being strained beyond their limits. Worst of all, as a result of society’s inaction on so many levels, kids are hurting. Unsupported and misunderstood, they often encounter challenges that compound as they grow older, when the school’s curriculum becomes more abstract, social relations become even more confusing, and pressures increase all around. With depressing predictability, they are labeled behavioral problems. They too often end up self-medicating, getting into trouble, or worse. This societal head-in-the-sand approach to the figures about drinking in pregnancy leads to a very dark place for too many. These negative outcomes can often be avoided with proper awareness, diagnosis, understanding and support. People with FASD deserve the dignity of a diagnosis and access to education and services to which they are entitled due to their disability. The guidance from the leading medical authorities in the U.K. is clear: “If you are pregnant or think you could become pregnant, the safest approach is not to drink alcohol at all.” Why aren’t we listening? We’re willing to give up soft cheese during pregnancy but not alcohol, despite the risk of brain damage? I just don’t get it. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Emituu.