I Hear the Pain of the FASD Community

 

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By @FASD_Mum

Social media brings us together.  It provides bridges, facilitates communication, gives us a way to defy time zones and social conventions.  For the FASD community, it lets us find others who have insight and experience with the many ways different lives are affected when a fetus is exposed to alcohol before its first breath.  Social media lets us speak.  It helps us to learn more.  In general, it is a useful tool for us all.

But this holiday, social media has been inadequate in the face of the pain some among us feel.

The young woman with Fetal Alcohol Syndrome who is struggling to overcome her own addictions but cannot find help.  She keeps getting turned away from A&E departments and says she is not sure she can bear it anymore.  I hear her pain.

The frazzled mother whose overwrought child with multiple diagnoses who cannot sit still long enough to enjoy the pleasures of the day and so turns destructive because he lacks the ability to explain himself.  I hear her pain.  She’s too tired, too beleaguered to feel anything other than ready to “give him back.” (I hear his pain too.)

The mum who feels like “the worst mother ever” because her youngest with FASD had a massive meltdown and her older son without FASD didn’t get to have a “normal” Christmas.  I hear her pain.  I hear both of those boys’ pain.

The mother who has to console her child after the grandmother yet again berates the child and the parent for allowing “bad behavior,” ignoring all the prep talks explaining the condition.  I hear her pain.

The young person with FASD whose stepmother refuses to let her dad come to see her on Christmas and whose brothers try to protect her from the stepmom’s rejection.  I hear her pain.

The adult with FASD who despite being a renowned advocate still faces rejection from his own family and friends.  I hear his pain even as he helps others.

The parents discussing at what point the earlier self-harm turns toward something more dangerous needing intervention.  I hear their pain.

The parents and carers who use social media to vent, and vent hard, about how impossible their lives have become and who seem short on compassion as they blame their kids.  I hear their pain.  (And maybe I hear their children’s pain loudest of all, those misunderstood kids who don’t yet have voices in our forums.)

The birth mum with FASD trying to break the cycle, but who is denied time with her own child more than a few visits each year. I really hear her pain. It stabs through me.

The adults who struggled their whole lives and only received their diagnoses after some big crisis, a run-in with crime, jail time, a career or relationship that crashed and burned, who try to pick up and move forward.  I hear their pain. There are many of these stories throughout the FASD social media.

Yes, Facebook and Twitter bridge us but they don’t bind us.  We are a community, but we are not by each other’s sides.  Most of us have never met. Being on FASD social media this Christmas was like following news from war zones.  I felt like a voyeur watching the bombs fall, hearing the “live updates,” imagining the realities on the ground, concerned but unable to change the events transpiring on screen. Houses exploding in chaos, kids screaming, parents crying in corners, young adults taking flight in the streets.  I found myself posting a suicide hotline on one page on Christmas Eve, empty and inadequate, wondering if some day my son might be reaching out to strangers like that.  Fearing the worst.  Feeling too small to help.  (I do know some of the professionals on the list were reaching out behind scenes, but it was heartbreaking nevertheless. And scary.)

The reality is that our growing FASD community IS in pain.  Help is needed urgently and desperately.  Lives are at stake.  Futures are in jeopardy.  Right now.  The statistics show that somewhere between 3-5% of the population has some sort of brain injury due to exposure to alcohol in the womb.  These are our friends, our family, our neighbors – those kids in our schools who seem unable to focus, those who are easily led into trouble, lost.  Those family members who always were “difficult,” who were forgetful and never on time.  The teens with bad tempers who drank a lot or joked too much.  They are among us, undiagnosed and struggling, feeling bad every day of their lives for some damage done to them before they even opened their eyes onto this world that lets them down again and again.  And again.  They are the ones who have diagnoses who try to do better but who lack support, advice, guidance, anchors.  They are the children struggling with FASD, whose overwhelmed parents want to help but don’t know how, don’t have the tools, have run out of strength and have nowhere to turn while their kids escalate further in such tense environments.

I hear the pain.  It runs throughout this community.  It can drown you, make you want to turn away.

But then I hear my own son’s pain, up there in his room, smashing beloved CDs against a door. I hear my own son’s pain as he just simply cannot hold it together for one more minute.  I hear my own son’s pain as he hates school, parties, playgrounds, swimming pools, cafés, car rides, scooter rides, dog walks, baths, drum lessons, concerts and any other experience that he looks forward to but which cannot meet whatever expectations he has in his head, at least until the next time when he desperately wants to go again. His pain is still raw, not nuanced as it will come to be as his emotions grow further and as his sense of himself becomes clearer.  These days I hear his pain in very graphic language that, yes, is hard to brush off despite the professionals telling me it is always best to ignore such behavior.  I hear his pain.  (I hear my pain whisper too, but I suppress it quickly.)

I fear some social media posts I have seen lately are counterproductive.  Hyping the number of kids being adopted with FASD.  News reports seemingly skewing data to make it seem like all kids with FASD have doomed outcomes despite parental input and early intervention.  This combines with stories of many who have adopted kids with FASD who seemingly were totally unprepared for the difficult terrain.  I worry that good-willed people are in danger of discouraging adoption of kids with FASD, vulnerable and innocent kids who are so in need of stable, accepting and informed families.

The stories that need to be told are dramatic enough to focus our attention.  There are people amongst us who have portions of their brains injured, destroyed or maybe even missing due to alcohol that coursed through their veins before they were ever able to cry out their pain. The damage done throughout their tiny, still forming bodies when alcohol burned its path into their developing systems, causing internal damage, structural problems.  These graphic details are not polite conversation, but they are the root of the FASD community’s pain and the suffering of our children, young adults and adults who live on this spectrum.  The distressing and disturbing behaviors and executive functioning difficulties are symptoms of hidden and serious physical disabilities.

No, it has not been a happy holiday for many hundreds, maybe thousands of people in the UK whose lives are affected by an FASD.  But this can change.  What is really needed is an open and straightforward approach to addressing these issues.  The UK has experts who can lead on these issues – they need resources, support and bigger megaphones. The new UK All-Party Parliamentary Group on FASD is beginning to form some thoughts on effective ways forward (this will be the subject of an upcoming blog post).  There are increasing numbers of educators and health care professionals coming into contact with FASD for the first time, which means that the next time they will know a little bit more and do a little bit better.  Our community is becoming more organized, even if it is still strangely disjointed domestically and out of step internationally.  Most importantly, there are powerful voices rising – those adults with FASD whose courageous leadership offers greatest hope.  People who are becoming savvy in using social media as a vehicle for change.

And up in my own child’s room, do you know what I hear?  The crashing has stopped, he has found his calm, in his own way.  Lights off, he’s in total darkness except for one glowing and soft “mood pillow.”  He has put on music and is rocking, having found his center.  He is learning how to navigate his world, because we are learning.  We are doing what we can to learn with professional help and advice from the FASD social media community.  Together we are finding ways to empower him to understand himself and his needs.  I hear his pain, still quietly internalized, but I hear his hope.  I hear his song.  I hear his tomorrow.  That is all there too.  In our lives and in the FASD social media.

I hear about the small moments of joy, of triumph.  I hear the cheers when big moments happen and people overcome.  I hear the love and I hear the determination.  It’s all there in social media.  I try to respond positively to every bit of fresh air.  My optimism needs that oxygen.  I welcome the successes, every small step of the way, every time a child rises, every time a parent finds a way forward. Every smile.  But that doesn’t mean I do not hear the rest.  And this post, this post is for those affected by FASD who are struggling.  I am sorry FASD is so cruel and society is deaf to the needs of this community.  I am sorry for such pain.  I hear you.

The Most Powerful Video on FASD We Have Seen

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By FASD_Mum and FASD_Dad

We don’t normally do posts like this, but we were both riveted to the screen this morning.  This is a perceptive and authoritative video explaining Fetal Alcohol Spectrum Disorders and the life-long impact even small quantities of alcohol can have on children before they are born.  If you would like to better understand our child, and others like him, please give yourself 26 minutes to watch this film.  The young 10-year-old girl in this film could be our son.

And please, support those around you who are or may become pregnant by helping them to avoid alcohol during those precious months. Experts in this video show the proof that even a small amount of alcohol in utero at the wrong point in development can have profound and enduring effects on a child.  And please also encourage our societies to help meet the needs of those loved ones who are struggling every day of their lives with this hidden disability.

Support and Resilience

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by @FASD_Mum

My husband and I spent four hours at an FASD support group yesterday.  About three of those hours were spent slowly taking turns around the room, hearing and discussing each other’s stories. Learning about the children each person loved and how prenatal alcohol exposure to alcohol has affected them.  It was a positive environment, skillfully led, with input from some experts who were also there, experts who have also raised kids with FASD.  It was a room full of hope and determination.

I was nervous before we went. I developed a new appreciation for the courage of those who attend AA and other support groups.  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.

What I heard, as we went around that room, slowly and respectfully sharing our experiences, was that we are not alone.  There are others out there, who know and who understand.  But it was more than that.  I know the statistics.  We are connected with many really helpful support networks in cyberspace. Social media is a gift.  It has helped us immensely to be in touch with families, experts, adults with FASD. But there in that peaceful room we were able to look into each others’ eyes, to see the pain, the fear, the rugged determination, the will to fight shining through the frustration and tears.  It was humbling but uplifting.

And yes, as I had dreaded, it was also 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.

There were three birth mums in the room.  Their power and their presence smoothed the anger I realized I had been harboring toward our son’s birth mother. It’s a whole other level of bravery to stare down the stigma, to put your child’s wellbeing ahead of your own defensiveness and fight like hell for your kids.

There was an intergenerational nature to the meeting that was refreshing.  There were parents and relatives of young people ranging from toddlers to the late 20s. We were recognizing our own experiences in others with kids of similar ages.  We were learning from those with older kids and maybe even helping those with younger children.  We learned more about legal structures that can help.  We heard of best practices for educating professionals.  We discussed ways to interact with schools to create more positive learning environments.  We saw self-less volunteerism in action.  We heard about endless hours some have spent trying to widen the services available to families affected by FASD.  It was a lot to take in.  Honestly, I felt exhausted when I left.  I just needed it to sink in.  I wasn’t sure what it all meant.

But then, this.  This morning I told our son that we met many families yesterday who had children with FASD.  He said, still trying to comprehend our various, gentle conversations about this over months, “Do I have FASD?”  I said, “Yes, you do.  And yesterday we heard about some amazing things that kids with FASD have done when they have grown up.  And we heard more about other kids with FASD, kids who get frustrated, kids who forget things.  You are not alone.  But you know what?  As you grow up, you’ll figure things out. You’ll learn how to manage things so you don’t always feel like this.  We’ll help you.”  And as I said it, I realized I had more confidence in these words, words that I have said before.  He will absorb that confidence as together we walk on into his tomorrows.

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Finding support:

The group we attended was organized by NOFAS UK. They can be contacted via a helpline at +44 02084585951.

The FASD Trust also sponsors support groups. Their helpline is +44 01608 811599.

There are similar groups in a wide range of countries – when in doubt, Google!

There are various ways to stay in touch via social media. On Facebook, there are closed group that are very supportive places to seek answers and to find support.  Groups with a UK focus include FASD UK (the moderators of FASD UK also organize informal support groups in the North East), Friends of the FASD Trust, Fetal Alcohol Syndrome WE live with it, and more.  There are other groups for other countries, which can be easily found by searching on Facebook. On Twitter, there are many informative posts every day with the hashtag #FASD. (We are on twitter as FASD_Mum and FASD_Dad).  

Reach out.  FASD is complicated on many levels.  Information is power.  Perspective comes from learning and networking.  We try to include links throughout this blog.  Please see our resources page for some places to start.

Hard times

We love a child with #FASD

by @FASD_Mum

There are times in this journey, when days seem long. There are days when we seem as parents to be unable to help in the way we would like. There are days when it feels like we are making it worse. How do you tell a 5- or 6- year old in a 10-year old body that his brain can’t process information the same way other peoples’ brains work, and THAT is why he can’t explain to you what he is trying to say? That is why the words evaporate before they are formed. That is why he can’t remember the thing he knew just a few minutes ago, a day ago, a week ago. At least not this time.

Frustration is endemic to this condition.  His, ours, his friends, our families. FAS is a hidden disability, and our guy is verbal and capable, and so people forget, we forget. Out in a crowd, people give us The Stare – as in, the what-kind-of-parents-are-you stare. What kind of parents let their child dress like that? What kind of parents let their kid barge around shops like that? What kind of parents buy their kid sweets when he is making such a fuss?

His frustration is basic and real. I would be frustrated too. I would not like to know I am different, to feel that every single day of my life.  I would not like to be The One who everybody singles out, who everyone tenses up around. I would not want to be The One not taking the same tests, not doing the same homework.

And yet, we are learning, even on those days – those very hard days – we can find commonality with a community of people out there who understands.  Through social media we are now able to connect with other families who also have a loved one with FASD. And best of all, we can connect with grown ups who have FASD, we can hear from them that our son may have a tough time, but he can and will grow up to be okay.  Yesterday was a hard time. But I reached out via a Facebook group, and I was able to tell him that I heard from a friend who is an adult whose brain works the same way as his, and this friend had some advice for him, which I shared.

The smile on my son’s face was priceless – like he never knew there were others like him out there. So, hard times are indeed part of this journey.  But at least we are not alone. At least there is hope out there for our son.  At least we are moving forward. They say the only way through a hard time is to go through it.  And then the sun comes up on another day, like today, and we start afresh.

Meltdowns

It was only after our child’s FASD diagnosis that we understood that his meltdowns were not ‘bad behavior’. Instead, they are a direct result of the damage done to his brain when he was in utero.  We understand now the key is to try to prevent reaching the point where a meltdown is imminent. Sometimes we manage to redirect the moment.  Sometimes we are tired, or grumpy, or not paying attention and we handle it all wrong.  We all try to “Take 5” – five, very conscious deep breaths when the mood starts to spiral.  We try.  And yet, spectacular meltdowns occur almost daily – things sailing across the room, accompanied by increasingly spicy vocabulary, gestures, and appalling rudeness. Deep distress and frustration boils out and over us all. But now we know none of this is heartfelt or intentional on his part. His brain just can’t stop it at this moment. The important thing is not to hold a grudge, because our child has a remarkable and admirable capacity to move on from such moments, to spring back with a great big hug and an “I’m sorry.” Continue reading “Meltdowns”