Mother enough?

Blog Mum enoughBy SB_FASD

Am I mother enough for this day?  Have I strength enough, humour enough, patience enough, faith enough in those around me?  Today our little guy is going to have his hand operated on by one of the UK’s top plastic surgeons.  He is having a ‘web release’ and Flexor Digitorum Superficialis (FDS) Opponensplasty done on his right hand, the hand he cannot use because – as he says – ‘it’s rubbish’.  The hand with the thumb that doesn’t work properly because while he was in utero alcohol washed through his developing system and damaged the joint so badly that his thumb does not extend properly.  Every time he tries to open something, he has trouble.  Every time he tries to do a button, he has trouble.  Every time he tries to hold something with that hand, he has trouble.

They can’t do anything to the bones.  (We were told by an orthopaedic surgeon that he is in fact lucky to have any joint there at all, which may be true but it’s still less than okay.)  Since they can’t fix the irreparable damage to the bones, this plastic surgeon is going to move tendons and work her magic to (hopefully) give him more range of motion, more strength.

Our son is 13 years old now.  He woke up this morning hungry.  He can’t eat.  We have to somehow get him into London, to Great Ormond Street Hospital, without him losing his cool.  Anxious (freaked?), out of sorts, uncertain.  He asked if he would still have the bandage on when he goes back to school on Monday – time has never been something easy for him to wrap his head around.  We have explained repeatedly this means no gymnastics for three months, that he will have to do exercises after this for his fingers, that he will have a big bandage.  But right now, this moment, all he knows is he cannot eat.  And he keeps staring at his little thumb.  The thumb that is 1/3 the size of his left hand thumb.

Am I mum enough for the uncertainties of this day?  The child who we need to give advance notice for everything does not yet know (because they don’t yet know) if he will need to stay overnight tonight in a big London hospital or if he will be coming home.  He worries about his dog.  He worries about things he doesn’t tell us worry him.  Our bag is packed, but somehow, I am feeling uncertain.

Facebook just popped up a memory from years ago, another time he was being prepped for a surgery – a tonsillectomy.  The nurse that day asked me if we were missionaries and if that is why we adopted.  This system can be cruel.  Somehow when we are at our most vulnerable they think that is the time to start questioning adoption, demanding to see papers.  Raising this issue right in front of our child when he most needs security.  This time, I have the papers in my bag.

Am I mum enough?  I don’t know if this is ‘right’ to have this elective operation.  I know there are children out there having far more serious operations to save their lives.  He has managed for 13 years with this hand, are we being foolish in trying to address this issue?  What if it doesn’t work?  What if we have put him through this for no good reason.

Somewhere inside me is a scream.  Why does this poor child have to go through so much pain and why does he have to face hurdle after hurdle where others walk on a more gentle path?  We can’t do operations to fix the parts of his brain that were affected.  Just a few days ago he asked me again about FASD.  He said he wished he didn’t have it.  He said he was sad.  I said I wished he didn’t have it too, and I was sad too.

We are lucky to live in a place that has free healthcare.  We are lucky to live near one of the world’s leading children’s hospitals.  I think everyone this year will get a copy of Peter Pan for Christmas – the royalties from that book have funded Great Ormond Street with its magical waiting rooms and state of the art technology.

But still, here we are.  Getting ready to make a journey that is outside all of our comfort zones.  Trying to fix – or help at least – in one small way at least one of the physical effects of prenatal alcohol exposure.

I wish just one of the self-righteous women who proclaim it’s their right to drink alcohol while pregnant could make this journey with us today.  I’m not talking about the women who don’t know they are pregnant, the ones who are confused about guidance, or the ones who struggle with addiction, abuse.  I have sympathy for them.  I am aiming this at those who accuse us of policing pregnancies when we try to raise awareness of the risks of alcohol in pregnancy.  You can’t possibly know what you are risking.

Come with us today.  And then I dare you to take another sip of that self-indulgent glass of wine.

—-
See also Prenatal Alcohol Exposure Damages Bones Too

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Four Letter Words for Help – FASD

Blog_HearBeyondTheWords
By @MB_FASD

Adoption UK carried out a massive media blitz this week based on a survey that said 25% of adoptions risk breakdown because of a crisis fuelled by the trauma children suffered in early life. Trauma which leads to aggression and violence in the adoptive family. It is a picture that a lot of families with children with FASD recognise, although Adoption UK never mentioned FASD in their media work. While not all children with these issues have FASD, it certainly struck a chord with me.

F**k. B***h. S**. Again. And again. At 7.30 in the morning. Or 7.30 in the evening.

Most kids with FASD lack impulse control. That includes over language. Bad language.(There is some research that says language is stored in a different part of the brain to other language, so this may be related to brain wiring too.)

We have a lot of bad language in our house. A lot. And, following the advice of professionals, we ignore it. Most of the time. We have to. If we didn’t we’d be in constant opposition to our son, in constant conflict that would help none of us.

He doesn’t mean it. A very clever educational psychologist once asked us “Why do you assume intentionality?” when discussing some of our son’s seeming acts of defiance. That struck home. We had been assuming that our son was being deliberately naughty. Oppositional defiance disorder is a thing. Some kids with FASD have it. Our son doesn’t. He just can’t control his impulses while dysregulated or partially dysregulated. So a stream of insults fly.

In the mornings and in the evenings, around the edges of his medication, he is partly dysregulated. And at those times the language comes out.

It’s very difficult. We struggle with this in a big way. I do especially. Not because of the words, but it gets really hard as it’s tied up in his refusal to let me help him much of the time. It feels like a strong rejection. (My wife tells me I am not seeing just how often these same words are used in her direction.)

But when addressing me, he always wants Mum. At least, when Mum’s there that’s how it is. He calls for something. I go to his room, and get a string of expletives and what feels to me like rejection.

I bring him food, and he won’t even look at it because I breathed on it. Happened just recently, I made mini-cheeseburgers to eat but I breathed on the food. So it’s covered in germs. Sometimes the reaction is physical and can hurt, but the actual blows are the easiest to take, it’s the emotional ones that are harder to shake off.

It’s really hard not to take this as rejection. I know that many times I don’t do a good enough job of showing that I’m relaxed. That I’m not irritated. That the bad language washes over me. Which generally it does. But the constant pushing away his harder to deal with. At a certain level it hurts.

I know he doesn’t mean it because he often does let me do the foot rubs and the leg scratches. When Mum is away, or just out, then all of a sudden my attempts at cookery are suddenly acceptable, and my help with the latest project really needed.

Our son isn’t proud of these moments – he apologises after the fact, he comes back to build bridges.  He stays close.  (He once famously told a deputy headteacher that he had been dysregulated when he cursed at him, he couldn’t help it then but he was sorry – a pointer to the fact that, with self-awareness, change happens).

The ways in which aggression can manifest itself are complex.

In a drive to highlight a very problem, and look for government action to support adoption, Adoption UK risked leaving an extremely negative picture which will undoubtedly put many people off adopting. As an adopted person myself, I would have done it differently. I would have painted the picture as bleak as it needs to be, but then softened it with hope, and a perspective.  In our house we have elements of all of those things that were splashed across the media following the results of the survey.  It’s not that we don’t get it.  But because we know the reason for our son’s behaviour, we frame our approach accordingly.  Importantly, we have a diagnosis in place as we head into the coming teenage years, something the experts say is vital to chances of a successful transition to adulthood.

Once you reinterpret the behaviours as a symptom of the condition, and learn strategies to address the underlying need, the sense of crisis diminishes.  A year ago we were in an intense period of crisis but things can turn around.

If you can’t change the child, then you have to change the environment around the child. You have to reduce reasons for anxiety. You have to adapt their environment so they can live as calmly as possible as much of the time as possible in that environment. You have to give them the time they need to adjust to change, whether that change is getting dressed for school or moving from one activity to another. We’ve changed his room, put in a quiet space and let him have disco lights that calm him. We let him dress how he wants to go out, not how we would like. We adapt because he can’t. And we’re lucky, friends and family have adapted too.

Things have got much better with time as we have learned to do this. He has learned as he gets older to begin to understand his triggers and to ask for help. He has been helped definitely by meds for ADHD.

No child is unchanging, nothing lasts forever. Situations change. And we have to change along with them. I have to do better at soaking up the bad language, and helping guide our son to a calmer place when dysregulated.

What’s the f***ing choice?

*******
P.S. – Support is available for families who are struggling.

Sensational Media Hurts Those With FASD

we-love-a-child-with-fasd-2By FASD_Mum and FASD_Dad

Warning: there are extremely offensive and disturbing quotes from the media in here about children and people with FASD, about birth parents, and about those who adopt complex kids.  We do not endorse any of them.

We were feeling good about the holidays.  Better than usual.  This is a hard time of year for many affected by FASD, and our family too has struggled through the seasonal merriment and mayhem over recent years.  During the 2-1/2 years since his diagnosis, we have taken great strides to better understand and support our 12-year old with Fetal Alcohol Syndrome and he also is better understanding himself.  Those moments that used to spiral out of control are becoming, for the most part, containable.  The tension that weighed us all down is lifting.  It’s still not easy, but with joy, love, informed support, (medication), and lots of sensory toys and play, we are getting there.

Yes, we were feeling ok.  And then an article from the Daily Mail popped up in our newsfeeds.  It slapped us in the face with its sensationalized headline and a picture of a child model screaming like a banshee.  “They open their homes to adopt – then find they’ve taken on youngsters who wreck their family. Why do we continue to BETRAY loving parents…”

An all-too-uncommon article about FASD in a major British newspaper is normally something those of us who push hard for greater attention to this issue celebrate.  But not all media is good media. This article lets down families living with FASD that need help.  It betrays children awaiting adoption by discouraging prospective parents.  It is destructive, contributing nothing positive to the national debate.

The article talks about how “[t]he children being adopted now are the offspring of our drunks, our derelicts, our damaged and our junkies.”  The result, it says “is an untold scandal, blighting the lives of thousands of well-meaning families.”  It invokes demonic imagery, talking about how educating these kids can be “the Devil’s own task.” It talks about how a child might be cuddled sweetly on the sofa and then without warning suddenly leap and “hurl herself” at her adoptive mum, hitting her, screaming “whore” and “bitch” and other “dark, dark words.”  The author warns “That might not happen tonight. Maybe not tomorrow, either. But it will happen again; it always does” as if there is nothing that can be done to help.  The article says nothing about the love and light our kids bring to our families, nothing about their talents and the contribution they make. No. In this piece, all our kids are demons who destroy.

The article does highlight the pressures some families face and it addresses the lack of support and funding for these families, but in doing so it repeatedly implies families who adopt kids with FASD are doomed. The clear implication is that people should not adopt, especially not the children of “those” people.

The article lit up the passions of social media.  At the time of posting this blog post, it has been shared more than 2,600 times (and counting), with more than 1,200 comments.

The sensationalism of the story was abhorrent enough.  But it is in the comment section where one can see the depth of prejudices we have to overcome if we are going to get society to deal with this hidden disability.

We are posting below some of the excerpts of those comments.  We can’t just dismiss them because we might not like the political leanings of a media source.  If these comments were written about any other segment of society we would be outraged.  We need to call them out.  We need to face them.  We need to debunk them.  These bigotries underlie the surface of polite discussion here in the UK on topics related to Fetal Alcohol Spectrum Disorders.  They fuel the stigma that stops our children, our young adults, adults with FASD, and their families from getting the support that they need.  We should never be so grateful for media attention that we allow this sort of article and these sorts of comments to go unchallenged.

Ready?  Here is what some of the dear British public thinks after reading this piece:

“Just put the little so and sos down.  Good for them, good for us. Cheap too.”

“Adopting an evil child is God’s way of punishing you for going against his wishes.”

“Trash begets trash that gets circulated around.”

“Some children are uncontrollable, and no amount of love and care will ever change them.”

“If a woman is a drug addict or an alcoholic, and generally a risk as a failed mother, she should be forced take medication to prevent her having kids.”

“It’s hard but morals, ethics and our way of dealing with the dregs of society needs to change. Why should happy, well balanced families be put at risk for being well meaning? These children have no future with a normal family.”

“I worked as a clinical psychologist for 20 years … I would never, never adopt a child nowadays. Not even a newborn. They are, essentially brain-damaged and cannot typically function in a normal family.”

“There’s no way I’d adopt, sorry… I don’t want to be beaten, stabbed or killed, thanks!!”

“Don’t do ‘everything possible’ to keep a premature baby of an alcoholic or drug-addicted mother alive, just to prove it can be done.”

“The genetics always came out eventually.”

“The problem today is that parents are not allowed to discipline a child in a way that would achieve obedience so the child becomes uncontrollable.”

“Think twice before adopting these kids. Fostering is like a test drive. If you don’t like you can always return to sender.”

Let’s be clear.  Kids with Fetal Alcohol Syndrome are innocent.  They have brain injury and other physical disabilities that are the result of exposure to alcohol in the womb before they ever drew a breath.  THEY DID NOTHING WRONG.  They are here, among us.  There are many, too many, in need of a lasting, solid home.  Yes, they will grow up to be teens, young adults and adults. Getting them the right support and stability matters greatly to their lives – it can literally change the course of their lives.  It can save families and relationships if they can be reached while they are young.  It can save them when they face the struggle of leaving home and trying to live independently.  There are no guarantees, but it matters.

Britain likes to think it is a caring community.

So, step up.

Experts estimate (because proper studies haven’t been fully funded and conducted) that there are as many kids out there with FASD as there are with autism.  Provide the information about prevention in the schools, in the doctor’s surgeries.  Stop faffing about whether or not your grandmother said drinking a pint gave you iron and follow the latest advice from the UK’s chief medical officer (who presumably has more scientific background than those urging you to drink up):

“If you are pregnant or think you could become pregnant, the safest approach is not to drink alcohol at all.” 

Stop thinking that it’s only those with addictions and living on the edge that have kids with FASD.  Accept the fact that those expensively dressed young educated, professional women who are increasingly binge drinking are a huge part of the problem too.  Provide help and assistance to at-risk young women and young mothers.  Fund the addiction counselling programs.  Provide proper healthcare.  Proactively fund and encourage early diagnosis of FASD and the related 400+ conditions that can co-occur.  Educate the social workers, schools and the other professionals to spot kids at risk for FASD earlier rather than later, once the secondary behaviors kick in (too often as a result of the lack of early support and understanding).  Get the parents, foster carers, special guardians, adoptive parents, midwives, teachers, doctors, educational psychologists, all those around the child who need it all the information they deserve.  Discuss and provide access to the therapies and medications that help some.  Put it all on the table, don’t sugar coat anything.  Face this epidemic as a caring society should.

We deserve a proper national conversation.  Together, we need to stare down those nasty hidden prejudices and dispel the stigma that is holding back the help we need once and for all.

Yes, absolutely, it’s important to highlight the struggles of children with FASD and their families, and the problems in the adoption system.  But we should never blame the children for their condition, portray them as demonic monsters beyond help whose only contribution to a family is to wreck it in the way this article chose to present them.  We should not trample the feelings and accomplishments of those young adults and adults with FASD whose lives are courageous and challenging.  If they are hurting or stumbling, as a society we need to lift them up and not knock them down – especially at times when their parents cannot fill that role for complicated reasons.  It takes a village.  We are that village.  We need to open doors of opportunity for this vulnerable population, not prepare more prison cells.   We should not scapegoat and shame birth-parents, but work cooperatively to help prevent further kids from being born with this brain injury.  We need to provide respite and compassion for those who are on the frontline caring for and nurturing those with this condition.

Life can be tough in our households.  Sometimes brutally difficult and even scary.  Certainly overwhelming and tiring.  We do need to tell that story so we can show that all families of kids with FASD need more support, that schools need resources, that the transition to adulthood is rocky and filled with dangers.  We need to show that support is needed and isn’t there. But in telling that story we must aim for positive change.  Because at the end of the day, beyond the frustrations, hurt and pain, that is what we all want, positive change.

We love a child with FASD, and he and others like him deserve our respect.  He is entitled to a chance at a life with dignity in a compassionate community to which he can contribute and from which he deserves support.

[Oh, and for what it’s worth we reported that comment about “putting them down” as inciting violence and hate.  Thankfully it seems to have been removed.]


Please see our resources section for more information and links.

Please also see the National Organisation for Foetal Alcohol Syndrome-UK (NOFAS-UK) response to the Daily Mail article

See also: A serious point about lack of post-adoption support is lost in what is a deeply unpleasant, slanted piece by Caoilfhionn Gallagher, Doughty Street Chambers

Adopting a Child With FASD

we-love-a-child-with-fasdBy FASD_Dad

Adoption is an important part of our family story. I was adopted in the UK back in the 1960s. We adopted our son with FASD a decade ago. Whenever we speak publicly about FASD one of the questions we are always asked, in more or less delicate form, is whether we regret adopting our son? Would we have chosen a different child if we had known he had FASD? What it is like for me, having been adopted, to raise an adopted child?

The decision to adopt was made easier for us because my parents did a good job with me. Ignoring the advice of the time, they told me about my adoption from the earliest age. They made sure I always understood I was their son, no different to birth sisters that followed. A genuine part of the family. This was at a time when parents were advised, unbelievably, to hide adoptions to avoid difficulties.

So if we had known our son has FASD, would it have made a difference? This is an important question, all the more so this week. This week is National Adoption Week in the UK.  One study showed that in Peterborough as many as 75% of the children available for adoption were exposed to alcohol in the womb. Should those kids, many of whom may have FASD, remain in the care system, denied the stability and life chances a loving family can bring them? Of course not.

My own background meant that the idea of shopping around for the perfect baby was horrifying to me. I couldn’t imagine browsing images of children as if from a mail order catalogue. A child is not a fashion choice. If you have a birth child, you take what fate brings. So it should be with adoption. We had both decided before our first son was born that although my wife was in a very high risk group for delivering a baby with Downs Syndrome, we wouldn’t take the tests. We didn’t need too. He was our baby, part of our family. In the event, our older son was born with no disabilities. But it meant years before we got to adopting our second son, we had considered what it meant to raise a child with a disability and we had decided that we could.

Raising a child with FASD isn’t something to be undertaken lightly, but neither is it something to be avoided. Kids with the condition need a family’s love just like any other child. We didn’t know our son had FASD when we adopted him, he wasn’t diagnosed for another 8 years. But we did know he had major issues, including developmental delays. He was 16 months old and completely silent when he came to us from the children’s home where he had been since birth. He also wasn’t walking – although he very quickly did. We knew there was something. We just didn’t know what. Before we adopted, when we asked the authorities what the something might be their reaction was to offer to find us another child. We said no instantly. We had already fallen in love with our little man, and shopping for the perfect baby wasn’t on the agenda. (Incidentally if you think any child is perfect then adoption may not be for you, at least not until you know a lot more about kids).

So what do we advise? Read a lot. Learn about FASD. Read about the problems your child is likely to have. How school will be difficult. How bedtimes will be really hard. How your child might go from a zero to sixty meltdown in a few seconds – things will fly, people will get hit. Toys and windows may be broken. Friendships will be hard, and the gap with peers will grow as your kid grows. The challenges will not go away.  Marriages and other relationships will be strained.  Some days may be long, very long.  Some of the effects may not be knowable for years.

Don’t go into this wearing rose tinted glasses. Don’t avoid reality. Understand this is lifelong brain damage.

But if after doing all of your research, you feel you are ready, do go into it. Know there are things you can do as a parent to increase this child’s chances for a happy, fulfilling, and successful life. Factor in that your child will bring a huge amount of love into your lives. That their smile will brighten the darkest day. That their achievements will warm your heart and make you proud, especially because they will have worked harder than any kid you know to get there. That they will amaze you with everything they can do. That they will make your family complete and teach you some of the most important life lessons we can learn.

Take your decision carefully. An adoption is a lifetime decision. A child traumatised by early life events, simultaneously living with FASD, would be irreparably damaged by a disrupted adoption. Social workers and others need to be much better informed about FASD, in order to better inform potential adopters. The services and support offered to those adopters need to be much better tailored to children with FASD and the needs of adoptive parents.  Information and concerns should be shared by all the officials, not smoothed over or tucked away.  No adopter should be blind-sided about this most important decision.

But, all this considered, go along and find out about adoption. See if it will work for you. If the answer is yes, don’t turn a child away just because they have FASD. They need you in their life, and you need them. Your life will be the richer for them.

There’s No Running Away from the Loss Every Adopted Child with FASD Feels

NoRunningBy @FASD_Mum

He was asleep.

I was typing in the dark, listening to the Mozart he puts on when he is seriously ready to sleep (as opposed to the endless Seven Super Girls YouTube videos or the various Little Mix albums he escapes into during the quiet evenings in his bedroom).  I had just been scrolling through Facebook one-handed while rubbing his heels and feet and scratching his calf according to his very specific directions.  He told me he loves me.  I know he loves me.

I knew he loved me earlier that day as he was running away from home too – about 50 meters ahead of me and barefoot.  This was the third time in a week that he ventured out like this, his frustrations breaking the previous boundary of the front door.  This time he went the furthest, storming away, around the corner.  My husband and I were not far behind him, though our minds were travelling years ahead.  We were scared, thinking of all those stories we read about of older kids with FASD who take off – their frustrations running far beyond their reasoning regarding safety.  If we got too close to him, it propelled him further away, so we hung back.

He eventually stopped – a siren and some sudden traffic slowed him down.  I told him to stay where he was so I could help him cross the road safely.  He waited, torn between his instinct for flight and his insecurity.  We finally made contact, and side by side we crossed the road and headed toward home, my husband trailing behind us, ready to help if need be.

That’s when our little one started a new conversation:

“I don’t belong in this family.  I don’t belong here.”

“I want to find the woman whose tummy I was in.  I love her.  I should be with her.”

“She should love me.”

“I belong with her, not you.”

And there it was.  The conversation I knew we would have at some point, even if I was not expecting it at that particular moment when our resilience was low, after all the upheaval, chaos (and fun) of our recent holiday, a visit from overseas relatives, and simmering concerns regarding the upcoming start of school.

“You are right.  She did love you.  But she knew she couldn’t look after you.  She wanted you to have a good home.”

“You always will be a part of this family.  I love you no matter what.”

“I want you to be safe.  I don’t want you to walk away like that.”

“We are a family.  We can solve our problems.”

“It’s okay if sometimes you feel frustrated.  It won’t always be like this.  Someday you’ll be better able to handle how you feel.”

And then ten minutes later, back home, he wanted me to be with him when he was upstairs, when he was outside.  Where ever he was, he wanted me near – the running away was forgotten and my maternal back scratching duties resumed.  This is not unlike the early days, when he wanted me all to himself – biting and kicking at others to be sure I was with him only.  Is it regression? Is it because I am not reassuring him enough?

This other woman, wherever she is, is missing out on a remarkable young being.  It would be easy to be bitter and angry toward her, but I am not.  I feel a great sadness that he has an emptiness inside of him that I will never be able to fill, I would never try to fill.  I wish she had been able to look after herself better, that she had been able to better protect him while he grew inside her womb.  I hate that her alcohol seared its way into his future in ways I doubt she ever understood. I hate that he spent those first days critically ill, fighting alone in this cruel world, abandoned in a hospital, crying without comfort.  Nothing I do or say will ever, ever fill those days, those weeks, those months, that nearly year-and-a-half when a tired and overburdened system did its best – inadequate as it was – to keep him healthy.

During our adoption process, we came across a couple of helpful books that I pulled off of the shelf again after this long day – they are not about FASD, but they reminded me that being adopted is complicated enough, let alone with the added challenges of FASD on top of it all.

“Being Adopted: The Lifelong Search for Self” by David Brodzinky, Marshall Schechter and Robin Marantz Henig focuses on the fact that coming to terms with being adopted has different phases as one goes through various developmental stages.  This book was important to my husband, as he too is adopted.  Looking through this again made me think that while our son knows his adoption story at a basic level, the way he owns that legacy will change as he grows older.  This too will become another challenge of this hormonal decade he is entering (and it will be made more difficult because his emotional comprehension will be that of a child much younger and his ability to absorb it all will be confounded by the hidden disability of FASD).

“Twenty Things Adopted Kids Wish Their Adoptive Parents Knew,” by Sherrie Eldridge, deals head on with the sense of loss that every adopted child carries with them throughout their life.  I skimmed through this book again, to see if I could find some answers for our son’s questions and comments.  What I found was comforting, in a sad sort of way.  I was reminded that some things I cannot change.

“[T]he truth is, the very act of adoption is built upon loss.  For the birth parents, the loss of their biological offspring, the relationship that could have been, a very part of themselves.  For the adoptive parents, the loss of giving birth to a biological child, the child whose face will never mirror theirs. And for the adopted child, the loss of the birth parents, the earliest experience of belonging and acceptance.  To deny adoption loss is to deny the emotional reality of everyone involved….Grief is the natural response to loss, and those touched by adoption must be given permission to revisit emotionally the place of loss, feel the pain, scream the anger, cry the tears, and then allow themselves to be loved by others.” (p. 4-5)

Raising an adopted child with FASD amplifies these challenges immensely, since the underlying brain injury makes abstract concepts harder to understand and emotional triggers are much closer to the surface.  The fact that our 12-year old son was able to voice to me his thoughts about his biological mum in the way that he did is progress.  It doesn’t hurt me, though I did feel a thud in the pit of my stomach.  But I am concerned over how the various dots get connected in his head.

I was struck, skimming back through this book, at another of the points: “I am afraid I was ‘given away’ by my birth mother because I was a bad baby.  I need you to help me dump my toxic shame.”

Toxic shame.  That phrase keeps going over and over in my mind.

The world is confusing and overwhelming for our son.  He knows he is different.  We have started the process over the past years to help him understand his diagnosis.  In the past few pressure-filled weeks he has had some of the most devastating meltdowns he has ever had.  Bewildering for us, they must be so scary to him (even if in the moment he presents as manically triumphant in his wild abandon).

I believe this new urge to walk away is wrapped up in his confusion over his own behaviors and the rage he sometimes feels inside of him.  I know he feels different from others around him – different in his abilities, in his interests, different in his desire to sparkle and shine in a world that wants boys to be flat and blue.  I hate to think he may be unconsciously carrying a  ‘toxic shame’ about who he is and how he acts.

I am oddly comforted to re-read some passages in this book – to skim again what I once thought I understood.  It is important to be reminded that his experience of this world is so entirely different from my own extremely secure childhood.  I sometimes get lulled into our daily routines (even if the days are never ‘routine’, our ‘norm’ has become ‘the norm’).  I forget just how unusual a family life we do have until something (like the recent holiday) makes me shine a light a little more into our life.  We tend to forget that ‘special needs’ are in fact out of the ordinary and there is a very good reason why things are sometimes so difficult, why sometimes the pressures pulling us apart are so great.

It’s good to remember that there are conversations we should have, and will have, again and again as our son begins to grow into the man he will be: deep questions about who he is and where he has come from, discussions that acknowledge his differences and celebrate his considerable talents and wonderful qualities.  Hard conversations, made more complicated as it is difficult to understand how much he understands.

I cannot fix the physical damage his brain has suffered.  I cannot change the way our family came to be.  I cannot force the world to embrace him gently (though I can do all I can to try to make it more pliable as he crashes into his future).  I cannot stop the pain and confusion and hurt he feels but is largely unable to voice.

I can’t do any of that.  But I can love him.

I can create a safe place for him to test boundaries.  I can, with the help of my husband and elder son, build with him a strong family unit that can withstand the forces that push and pull him.  Extended family and friends and professionals can all help buoy us all during these stormy years ahead.

I will not soon forget the moment I saw the defiance in him melt as he stood on that street corner, realizing he went a bit too far – the uncertainty that washed over him.  He shrunk into himself as the world suddenly seemed bigger and more overwhelming than the overconfidence and anger that had driven him to ‘run away.’  He looked so small.  So vulnerable.  I was aching inside.  This time we were there for him.  He let me take his hand and he let me guide flip flops onto his bare feet so he could walk home without pain.

Every time after a rage, after a storm, he looks to see if we are there.  Every time.  Every child needs that security.  Every child.  Most especially adopted kids, and particularly adopted kids who may or may not be fearing another rejection borne out of the ‘toxic shame’ buried inside of them, a fear they are ‘bad’ when really they are little superheroes as our adult friend with FASD, Lee Harvey-Heath says.  I just worry about that day when he might go too far, too fast and I might not be there when he needs help crossing the road or finding his way home.  I know I shouldn’t borrow trouble.  What will be will be.  We can do all that we can do, and we can hope it makes a difference.  This love means something.  This bond will help him in times of need.  I know that, deep inside, I know.  I know he knows too, somewhere deep inside.

Our little guy fell asleep, with me sitting next to him on the bed.  Mozart washed over us both.  It was all so peaceful and close – so far from that chasm I had felt earlier staring across that very wide street.  I sat there in the dark next to him in the bed for another 30 minutes.  I guess I needed that connection and calm reassurance as much as he did.

We all do.


P.S. – This post feels so heavy.  We must never lose sight of the ‘ups’ as we try to understand and minimize the ‘downs’ – here’s a little glimpse into his joy.

 

When the News Hits Home – FASD & Forever Families

InTheNews

By @FASD_Mum

Yesterday the FASD forums were lighting up with reactions to news that a 10-year-old boy with Fetal Alcohol Syndrome (FAS) was at the center of an international legal battle over who exactly is responsible for helping him to cope with his disability.

According to news reports, the child was born in England and adopted when he was two. The parents moved to Ireland where they reportedly engaged over several years with various therapists, but the combination of FAS and attention deficit hyperactivity disorder, mood dysregulation disorder, alcohol-related neurodevelopmental disorder, a sensory processing disorder and a reactive attachment disorder proved overwhelming.  They brought the child back to Poole, and “presented” him to the authorities there in belief that he would be better looked after in the UK system than would be the case in Ireland.  The couple said they want him “rehabilitated” to their care after appropriate interventions.  The child was thrown into a legal quagmire.  A UK judge concluded this is a case for the Irish courts since that his where the boy was “habitually resident”.  We shall see what happens next.

Parents, carers and others in the online FASD support groups are right in urging that we avoid judging this family before we understand more about their situation.  There are countless cases of people adopting children whose needs are more complex than imagined and whose families are strained to breaking point as a result.

Those in the UK who have to fight too hard to meet the basic needs for their kids with Fetal Alcohol Spectrum Disorders (FASD) have been shaking their heads about how bad these parents must think it is in Ireland if they see UK as some sort of shining example of a place where a child with FASD will be looked after.

The reality is that here in the UK too many confront needlessly complicated procedures even to get a diagnosis, that most basic of starting points.  Despite the fact FASD may be as common as autism, the stigma runs high and very often parents are advised by ill-informed medical professionals to avoid giving their child this “label”.  There are those who have adopted without complete information about the child’s full history, whether deliberately withheld or not.  There are those who rightly or wrongly expected continuing support after the adoption.  Given the nature of this disability, very many do not understand the full impact of this brain injury until the children hit their pre-teen and teenage years.  Too many are ill-prepared for as many as 400 co-occurring conditions that can arise when alcohol crosses the placenta.  There are too many who struggle to continue to provide support for their child after the kids reach 18.  This is especially devastating and bewildering because the rule of thumb is that kids with FASD can have an emotional age half their chronological age.  There are those coping with the secondary issues that can come when earlier interventions fail to meet the needs of a child – the addictions, self-harm, dangerous behaviours that place vulnerable people in jeopardy, incarceration, homelessness, unplanned pregnancies, and more.

And yet.

Knowing all of that does not remove that ache in the pit of my stomach when I read about these relatively rare instances when a parent does something dramatic that rattles our consciences. Reading about this recent incident, I was instantly reminded of the case where a US adopter put her 7-year old son back on a flight to Russia, a case that shredded to breaking point the fibres of the already strained US-Russian adoption system following convictions of the murder of 19 adopted Russian children at that hands of their adoptive American parents.  The mother who bought her child that one-way ticket to Russia was eventually ordered to pay for his care.

When adoptive parents stand and take an oath they commit to be there forever to share a life of love, concern and surety for a child who has known too much insecurity and too much upheaval.  Adoption is not fostering.  It is not temporary.  It is forever.  Yes, as with biological children, sometimes families must place a child into a residential center when the family is no longer able to cope or when the child’s needs exceed that of the family’s abilities.  Sometimes when addictions and secondary behaviors take hold, there is little parents can do. This is always tragic.  But those tragedies should not be compounded by a child being left unloved, unwanted, and disowned again by those who swore there was a place where they would always belong.  The child’s side of these stories is rarely heard.

I doubt there is not one person who was adopted who read this boy’s story and did not feel his or her chest tighten from old and painful scars.  My husband – successful, happy, well-loved his whole life except for those first several weeks before he was adopted – my sweet husband won’t even engage in these discussions online because it hits so deep and he fears saying things others might find offensive.  But it is his truth and the truth of countless others for whom rejection is a baseline from which they must build their lives: trusting in permanence comes hard.  Imagine the wallop they felt when they read that this child was “returned” to sender.  I try to shield our adopted son from the headlines of this story.  It is just too horrible to contemplate – the very last thing I want him to worry about.  His life is confusing and complicated enough.

I would hope that any parent who adopts a child is serious about that “forever family” pledge.  In a world where divorce is commonplace people think some vows are more ritual than reality.  But when it comes to a child’s life, these adoption commitments must mean all that we say they do.  When we adopted we were given a long list of potential medical problems our son may have, but no-one so much as mentioned FASD.  Nevertheless, we committed – understanding life would unfold and come what may we would be walking this path together.  That did not change once we had the FAS diagnosis that provided a framework for us to be able to fully understand our son’s needs.

There is light in every child.  There is laughter and love and hope in every child’s heart.  Every child wants to be accepted.  Every child wants to feel safe and secure and cherished.  We all need an anchor in this scary and shifting world.  Kids who don’t fit into society’s expectations need that home base most of all.

My heart weeps when I contemplate the life that 10-year old child in the news has to look forward to.  In expressing our understanding and compassion for the parents, we must never, ever lose sight of the children.  How lonely and lost that child must feel in a world that keeps tossing him around. That poor, adrift, and misunderstood child who suffers because before he ever drew a breath he was in the wrong uterus at the wrong time.  He is innocent, like a victim of a drunk driving accident.  This child desperately needs our compassion.  The issues that got him to this place demand immediate, sustained and serious attention of society.

 

Reaching Out After an FASD Diagnosis

We could no longer pretend everything was 'normal'We started to reach out about our son's FASD diagnosisAnd that changed everything.By FASD_Mum

We all want to be ‘normal’.  We want our kids to be loved.  When things go wrong, our instincts are to put on a smile, pretend ‘there’s nothing to see here,’ and to brush past staring strangers.  But sometimes that just doesn’t work anymore. This post is about our journey in reaching out to others about our son’s FASD diagnosis.

The issues that made that process of opening up so difficult began long before we had that acronym to hold onto.  We fought hard to adopt our son.  We had to wrestle with the complicated system.  We also had some of our closest family members and friends challenge us regarding the risks involved.  As older parents we were aware there were risks.  We had faced this head-on earlier.  Despite the odds, we did not do any of the advanced tests during my earlier successful pregnancy.  We were ready then to love any child who came our way.  We approached the adoption the same way.

And yet, I deleted some photos from my camera the very first day we met the friendly, determined and curious child who would complete our world.  We were entering the interim adoption period while we were waiting for things to be finalized and I simply could not handle re-opening those horrible discussions again about the risks and I knew those photos would raise eyebrows.  That night in the hotel we had one of the deepest conversations of our marriage.  I remember looking intently at those pictures, saying something is not right.  We had to face this, we didn’t turn away.  I remember a warmth in the room, a closeness.  The next day we asked some follow up questions in the baby home.  We were told, no, he doesn’t have Downs Syndrome.  We had wondered about this from the photos, although it wouldn’t have changed our decision.  (We now know we were looking at the full facial features of Fetal Alcohol Syndrome).  They asked if we wanted to see another baby.  We declined.  We both knew without a doubt we were not going to change this course.  This child who had so intently looked into our souls, he would walk his path with us.  We would hold his hands forever just as we once promised each other.  We would not be shopping for a baby.

The early post-adoption years were full of therapy after therapy after appointment after appointment.  We asked the hard questions, had rounds of genetic tests.  Nothing specific was pinpointed.  Not once did the possibility of Fetal Alcohol Syndrome pop up and we cannot understand why we ourselves didn’t think of it.  People understood he had sensory issues and various physical issues.  It all seemed natural for someone who had been in an institution for 16 months.

Life at home grew harder as our son began to grow.  We used to be very social.  We used to have lots of friends over for dinners.  We used to go out often with kids or without.  But as time went on, it became harder to think of a babysitter who ‘could handle’ looking after our youngest.  It became harder to think who wouldn’t mind it if something awkward happened while we were out somewhere.  It became harder to find energy to focus on ourselves as a couple.  It became harder even to talk about it with family.  Our parenting wasn’t working, something was wrong.  Bedtimes would go on for hours.  Time outs would become raging battles.  We were unable to get through even one store without some sort of holy hell breaking out.  But we couldn’t really talk about it, as we had assured everyone we understood the risks and we were prepared for whatever happened.  We would say we’d had a ‘hard day’ but somehow that was simply not translating into any kind of action from those around us.  Once when I complained someone said, “Well, why did you have kids then?” That one off-hand comment shut me up for another year or two.  Still our son was young enough that an hour at a playground screaming wildly around the walkways on his scooter at 100 miles an hour and some death-defying swinging was still a guaranteed release.

So then, The Diagnosis.  He was 10.  We had resisted the earlier autism diagnosis.  Autism had been discussed from those initial days, and he just didn’t quite fit the profile.  But this Fetal Alcohol Syndrome diagnosis was different somehow.

“Irreversible brain damage” is a phrase that can knock the air out of your body and make you wonder how you will find the strength to get the next breath. It can send all kinds of heavy doors slamming down on a future that you once dreamed for your child.  To know it could have been avoided can leave you gasping from the cruelty that exists in this universe.  At least, that is what it can feel like at first.  It is a hard, hard thing to hear.

All those test scores and numbers and percentiles pile up.  They seem so damning and so cold.  Even as they rattled them off after their imperfect testing sessions, even as we fought back knowing these figures did not capture our son’s abilities and strengths, even as we were being bombarded with some of the most horrible news we could have been given, we were already planning how to package this for the people in our world.  We wouldn’t tell them everything.  No need for them to know that part of it.  We would wait (a year, it turned out) for the full report, then maybe we could go into more details.  We did share some of it, carefully, with a very small circle (leaving out some key numbers, leaving out the worst of it).  Having a diagnosis did help especially with those family members who may have been thinking he would just ‘grow out of it’ or that he was just ‘being naughty.’  But none of us, not then, really understood yet what a diagnosis of FASD meant.

The process of beginning to understand how our son’s brain works took time.  Figuring out how to explain that to others around us was daunting.

We were stunned and we grieved. We swallowed the mind-boggling implication of the statement we were told as we received the diagnosis that in the UK, “There is no protocol for post-diagnostic support” for a person with FASD.  Having just been told our son had brain damage, we were simultaneously told there is nothing being offered to help us move forward with that news.  We stared at the reports and then put them away.  I think I slid into a mild depression, which isn’t an easy thing to do when there is a special needs child in our home needing constant attention.

Meanwhile, we took to the internet.  We googled. And googled.  We found some of the national groups via our google searches. (That too was confusing as there are several networks even in a place as small as the UK, all with similar names, similar purposes.)  Despite having been advised by UK professionals not to look at international information that might not apply here, we devoured it all.  Science crosses borders.  The information became overwhelming.  I started an online “Pocket” folder to keep track of the websites – with tags so I could search more easily for different information (FASD brain, FASD education, FASD prevention, etc).

We started with the school which had zero experience with a child with an FASD diagnosis. It became obvious we needed to get them information quickly. We prepared a whole binder full of some of the best practices.  (Some of the articles are here.)  While there is a balance in not overloading the very busy educators, no one in this school at least was going to have the excuse that they didn’t know where to find information.  We started to talk with the teachers about FASD nearly every day at drop-off and pick-up specifically about some of the tactics we were learning.  We worked cooperatively. We made some decisions when our son was in Year 6, facing national tests that the schools had been aiming toward since those students walked through the door.  He did not take the SATs.  We had a long relationship with the secondary school, since our kids both attended every holiday workshop they offered. We met early on in the spring with the SENCO at the secondary school he would be attending the following fall, again, armed with a fully loaded binder of information.  We planned his transition carefully.

But even still, we were floundering at home.  Everything was hard.  Our days were chaos.  We were concerned about the impact of this atmosphere on us all, including especially how it might be impacting our older son.

My husband and I had a serious talk about how we could no longer pretend everything was ‘normal.’

This was a key moment. I am sure I was pushing him a bit out of his comfort zone, but we agreed to widen the number of people who knew about our son’s diagnosis.  I needed this.  I was becoming too overwhelmed.  We were overwhelmed.

We started a secret Facebook Group.  People have a lot of negative to say about social media, but it’s a tool that can be useful.  For us, this was a key turning point.  This was the moment our lives began to feel a bit less lonely and really, it’s a simple thing to do for anyone who is on Facebook already.  Facebook has a feature that lets you add selected people to a ‘secret’ group – this is different than the closed groups of the various FASD networks.  For our secret group we chose who we wanted to start sharing information with.  We chose a mix of family, friends, a few colleagues, people we know who have children with special needs, and others.  This was our first message to the group. We had an overwhelmingly positive response.

“Dear friends: They say ‘it takes a village’ and this is our virtual village. We are inviting you to join this closed ‘secret’ group because you have shown over the years your love for our son and our our family. We have recently learned from the UK’s leading expert, that he has fetal alcohol syndrome, the effects of which have been compounded by early neglect… He has neurological damage that has resulted in difficulties in his ability to perform executive functions (i.e. – more abstract thinking). This condition, they say, is severe and lifelong. He functions very well with support. He is mainstreamed in public school and is performing well, though at a lower level than his age group…He has amazing strengths – he is an exceptional gymnast, he is great at music/dancing/singing (we have been told he may have perfect pitch), and he excels at other individual sports, esp. swimming. He is a generally positive and loving child. He has ADHD, without the inattentive side of it. He does not have autism due to his social reciprocity abilities, but he does have some restrictive repetitive behaviors. Our purpose in setting up this group is to allow us to discuss things a little more freely, using FB to our benefit, without having the full group of FB friends and colleagues see this discussion, as we want also to respect his privacy and dignity. (As a ‘secret’ group, only members can see the group, its members or its postings.) We have been struggling as a family for a long time now. We know we need help. Part of that is widening the number of people we share this journey with. We are not trying to exclude anyone from this discussion, but we don’t want the numbers to get too big, or we will be replicating FB itself… So we welcome your thoughts, insights and fellowship along this path.”

We also started to squeeze in one small social activity.  We started to attend coffee mornings on Friday mornings with a group of parents from the school. We began to help initiate these as well.  The purpose is not solely about FASD, but it allows us time to chat informally.  Some family members began to come.  Our network grew a little stronger.  This group includes the men who came to school with red-painted nails when they heard our son was being teased for having red nails on a school dress-up day.  Heroes, one and all.

We started to blog. We decided we had been having so much trouble finding all the resources that we might as well make that research available to others.  We also decided we needed a way as a family to further develop our own thoughts and to process the experiences.  The very first entry, “Meltdowns,” was explaining how we finally understood our son’s brain works differently:

“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.’”

We started to attend support groups. This was another pivotal moment which we wrote about in a post about “Support and Resilience”.  Suddenly, even our worst case scenarios were not so scary.  We met people who have been through those worst cases and told us there is always hope.

We continued to arm both of our children and our family with information about FASD. We have gently been giving our younger son more words to understand himself.  We have given his older brother more detailed information.  We don’t belabor any of this, but we are educating our family unit with the information we all need.  Our older son has a space on the blog where he can write when he wants to.  An auntie has joined as a guest blogger as well, addressing issues of how to engage extended family in these discussions.  Some of her posts have become the most widely shared, proving so many of us need help in engaging extended family.

We started a local support group. We talked openly with the pediatrician, and viewed her as an ally. She too felt the need for much greater education and resources in our area. She encouraged us to start a local support group.  She attended our first meeting and shares our information with relevant families.  The group started small, with only three people.  A few months later we now have approximately 20 people and we are all learning from each other.  The network is growing as more people are aware we are here.  We are becoming tied in with regional services for potential adopters, other groups with special needs kids.  Our posters are now hanging in local hospitals and doctors’ offices.  We are working collaboratively where possible.

We have become tied into national and international networks, including adults with FASD. This is the most significant change for us.  To have access to adult role models with FASD, people who have been there and who can tell us what our child is not yet able to explain….wow.  That’s mind-altering, horizon expanding power  and insight for we parents of younger kids.

This weekend we ran an educational table about FASD at a school fete at our sons’ old primary school, along with a game to get kids to come over.  We made a simple display focused on the theme that different brains work different ways, and it’s okay to be different.  We handed out flyers, announced our next support group date.

People tiptoed around it all a bit. It’s a heavy topic for a festive environment.  But we know it’s important to start slowly and build step by step.  It felt good to have our little one there, proudly helping.  It was wonderful when both our sons were helping the little kids with the games.  It felt a little bit like we’d come full circle as a family.  We entered that school so many years ago, with one child that none of us really understood.  And here we were, strong.  Confident.  Committed.  If even one person filed away the messages, and if someone one day reaches out for help or avoids a drink while pregnant, then it will have been well worth a hectic day in the damp and cool British summer.

Our family is still on a journey.  There are others who are so far ahead of where we are in our understanding, others so much better able to help or give advice.  We don’t claim to have the answers.  We are barely able to handle the still increasing challenges in our own home.

I am not trying to imply this path is easy.  In fact, it has been unbelievably hard lately.

But, even then, even when it feels like the weight of the world has landed just right smack on top of your weary and battered shoulders, even then it’s possible to look outward a little.

Finding the courage to open up to ourselves, our family, friends, colleagues and community about these struggles has in fact helped us immensely.

We are getting back more from this process than we give.  We can see past the walls we felt slamming down during those early post-diagnosis days.

There is Norwegian saying, “the path is made by walking it.”  We don’t know exactly where this all is heading, but one thing is certain.  Moving forward is so much better than standing still.

With a little one who is constantly changing, who flies and flips with great zeal into every day, whose life is a rollercoaster of emotion and impulse and love, we simply can’t be static.  For him, we have to be brave enough to tell the world who he is, where we are at, and what we need to make it through the moments, through the days, through the stages.  And to reach out to others to find out what we don’t know.

If it ‘takes a village’ to raise one kid, then it is also our job to contribute to the community.  In the process it’s the basis of a good life, the kind of life our parents taught us to live.   The kind of life we are teaching our sons to live.  Beyond the fear.

If you haven’t done so yet, go on.  Take just one step.  It feels good.

———————–

Just read this also related piece about the added challenges of reaching out from the perspective of a birth mum – The Look of Horror When I Tell You My Child Has FASD.  The stigma of this diagnosis must be overcome.  We have to break through these walls to help our kids, and to protect those yet to come.


P.S.  This is being posted on Father’s Day.  My sons and I are oh so very lucky to have such a great man in our lives.  I can think of no better way to celebrate Father’s Day than to reaffirm the joys of this (somewhat daunting) journey with a man we all love dearly.  He didn’t get a card, life’s a bit nuts, so here’s to you @FASD_Dad!

 

Mother’s Day, Part Two

Dear child of mine, Today I recommit to you. To all that you are, to all that you

By @FASD_Mum

Today is US Mother’s Day.  I wrote a blog post on the UK Mother’s Day a couple of months ago.

US Mother’s Day is forever entwined in my head with my mother’s death, a beautiful sunny day when I was not yet 30.  A hospice patient, lying on her own sheets, with her own pillows, window open wide to the fresh spring breeze and the sweetness of a hopeful world, my mother took her last gasp and that was that.  Finally.  Peacefully.  Cancer did not win.  She won.  Her way.  Her terms.  Showing me in her final act how to claim one’s ground, gracefully.  It was the 12th of May, and sometimes that day is Mother’s Day.

It’s kind of nice for me to have two Mother’s Days to celebrate.  I used to dislike the early, colder UK Mother’s Day.  But now I have come to appreciate the chance to separate out being a mum myself from celebrating my own mom.  But of course those things are intertwined in ways psychoanalysts have been trying to disentangle for eons.

This year, the taste of my own mortality is ever present.  I have been ill and I recently spent 36 hours with all the medical professionals around me suspecting I might have had one of the big ‘nasties’ – I spent 36 hours thinking of the ironies that my brain too might have had cancer, or an aneurysm, worrying that cancer might have spread to my lymph nodes.  None of that was true, and I never believed it was, but it does change you to lie in a hospital bed in the deep hours of the morning wrestling with those ‘what-ifs.’  (I wrote about that experience here.)

Every mother, every carer, every parent has those moments where their knees buckle, and they feel the fear.  What would happen if they were no longer here?  It’s heartbreaking to contemplate. Impossible to imagine.  I love both of our kids with every ounce of my being.  I can’t dwell in that space or I would crumble.

It was after my recent hospital stay that I told our eldest more details about his birth day.  I told him that during my complicated delivery I was not properly anesthetized (my epidural had failed, though the docs debated this).  When I heard “the baby is in distress” I begged them to cut me even without pain medicine, to do whatever they needed to do to let him live.  How when I woke up from the general anesthesia they were able to use at the last minute I had no pain medicine in me and all I wanted to know was if the baby was okay.  (He was.)  Once I knew that, then even the nurses were crying in their hurry to get me pain medicine when they realized with horror what had happened.  I share this story here, because this love I am writing about is for both of my sons.  I need them both to know I would do anything for them.

This blog however, is about raising a child with FASD, so I am focusing here on the thoughts that flashed through my mind that recent night in the hospital, staring down the nasties, worrying about leaving my sons.  Worrying about leaving my son with special needs.  I simply was not ready, my job is not yet done.  There is too much yet we do not know, too many hurdles he has yet to jump.  These next years, the teenage years, are pivotal.  I must be there.  I want to be there.  I have to be there.

Motherhood has its hubris.  We believe we are the key, the core.  Of course I know he would survive and thrive without me.  I know others would help him, guide him.  But I am his.  And he is mine.  And this world is a big and scary place for a vulnerable and misunderstood child.

And, sitting here in the sunshine, watching him play, I am thankful we have today.  We have this sunshine, these birdsongs, this moment.  Some days, I even think we have grace. (Until of course it all dissolves and my uncertainties take over as marble runs sail across the room and the dog must be protected. And the words are angry and the world is not right.)  FASD is consuming.  It is relentless.  It is unfair and it is cruel – a manic and frightening rollercoaster without end.

But no matter how sorry we feel for this child’s reality, we cannot change what happened inside the womb.

We can, however, choose to welcome this day, this moment, the possibilities and the potential.  Whatever we as parents and carers have to do to find that inner peace, we must do it.  It is a choice.  A conscious choice.  Just like our children will face a lifetime of having to choose to be positive, an eternity of having to make those decisions to keep them upright and safe despite their confusion and frustration.  If we give in to the despair, so will they.  If we let those dark thoughts consume us, of course they will too.  We have to find the joy.  We must.

It is here.  If we just sit still for a moment, we will find it.  Sometimes it’s in the smallest places – in the position of a small hand on our arm, in the sigh after a little kindness, in the nearness of that tiny foot to our own own.  The way this child, who walks this world in such confusion, turns to us with a smile.  It is here.  The joy is here.  Sometimes motherhood means searching in the darker moments to find the light switch.  Sometimes they just need to know it is safe, and that they are not alone.  Sometimes their souls catch our lullabies, and we won’t know we were heard until years later.  Believe.  I believe in all children, including those who show us what we don’t know.  I believe.

 

Mothering Sunday

Mothering a child with FASD

By @FASD_Mum

It’s another “Mothering Sunday” here in England.  I am still unused to these earlier, colder March Mother’s Days, months before the day is celebrated in the USA’s May sunshine.  It’s less lilacs, pink roses and blooming azaleas, and more peeking crocuses and daring daffodils here.  My own mother died one May, amidst those blossoming blooming days, carried away on the breeze.

Maybe it’s a gift that this annual day devoted to thoughts of my own motherhood happens now for me in a different season.  I never had the chance to ask my mom about my own mothering.  There are about a million things I would love to ask her.  And yet, she spent just about every day of her life preparing me for what she considered the greatest role in life.

My mom never knew my husband.  She was not there for my scary ectopic miscarriage, when my mortality was suddenly there staring at me from an untried and still green doctor’s face.  She was not there for the birth of our first son, when I found myself strapped onto an operating table, not properly anesthetized, begging them to just cut anyway when I heard them all shouting the baby was in immediate distress. (Thankfully, they were able to put me under general anesthesia in time and the baby was more than okay, he was and is spectacular.)  She was not there when we picked ourselves up after we failed to conceive again, when we visited the IVF clinic and decided that route was not for us.  She was not there when we first saw a video of the young toddler in a Russian baby home, crawling commando style to get that toy he so desperately wanted, determined and reaching.

She wasn’t there at the airport with our family and friends as we brought the newest US citizen through the airport toward our future as a forever family.  She wasn’t there to see the distress of our eldest son when his new baby brother wasn’t wanting those cuddles.  She wasn’t there to see this overwhelmed toddler slam himself into walls and floors, a permanent bump on his forehead for years, to see his aversion to touching grass or his exhilaration at feeling a breeze. She wasn’t there appointment after appointment after appointment after appointment.  She was not there when finally at age 10 the news of his Fetal Alcohol Syndrome diagnosis smacked me down harder than I knew at the time, when “irreversible brain damage” became the new prism through which we began to understand our son’s condition.  She wasn’t there. It is a deep, deep ache.  My mother wasn’t there.

But she was.  She is.

My mom was salt of the earth.  She was one of nine kids of two Scottish immigrants. They struggled through the Great Depression, she told tales of stealing coal from railroad tracks, eating mustard sandwiches.  She couldn’t accept the scholarship she was awarded because she and her sisters shared clothes and she did not have one week’s worth of clothes to take to school.  She was headstrong, smart, and imperfect. She was a force of nature. She refused to allow the five of us to take ourselves too seriously.  She was relentless in her insistence that we stand tall (often said with a knuckle pressed between my two shoulder blades to get me to straighten up, prescient I guess of my current neck/spine issues).

So, how do these musings tie into a blog about a child with FASD?  I never knew it at the time, but she was preparing me all the while for this moment, this life.  Her quirky sayings play over and over and over and over in my head. They pop up sometimes at the strangest times, offering comfort and direction.

“Pick yourself up by your bootstraps.  Dust yourself off.”

Our son’s diagnosis hit me hard.  Suddenly all the sensory integration in the world was not going to fix this.  She would have recognized my depression sooner than I ever did.  She would have told me to get on with it.  She was insistent that everyone is capable of love, everyone can feel love and that is the most important thing of all.  She taught me to focus on the love, to look for the sparkle in his eye and to cherish it.  She trusted that eye to eye contact more than most.  I can’t tell you the number of times we have shown people who believed our son was autistic those pictures of our first meeting at that baby home, where our son is nose to nose with us, eyes gazing into our eyes and smiling. Even when the baby home offered us another child if we had any concerns about adopting this little boy, we trusted those moments looking into each other’s souls. We were never going to change course. This was meant to be.

“A mother is only as happy as her saddest child.”

She would have known this fear, this terror that hits at times, the deep aching that must be suppressed because if I start crying it will not stop.  The knowledge that through no fault of his own our son is going to walk through his life with a disability that few will understand.  He will face time and again the confusion and disappointment that comes from being misunderstood and pushed aside by those who don’t take the time to see him in his entirety.  She would know the full message of my hugs, which seek to swathe this lovely child in a surety stronger than the world’s pressures: your mother knows you, she sees you, she loves you for all that you are, as you are.  You are enough.  You are everything. You are perfect, because you are you.

“Here’s to you, as good as you are and here’s to me as bad as I am.  As good as you are and as bad as I am, I’m as good as you are as bad as I am.”

This was my mother’s favorite toast.  She hated hubris.  She ended up at tables and in forums where some Very Important People would be, and she rarely held back.  She knew she was imperfect.  She always said that with an education she would have been dangerous.  But she taught us to respect people not for their titles, fame or money.  She saw straight through that, to the core of a person.  I know she would have taught this toast to our son as well, staring into his eyes, teaching him to dare others to think they were any better than he is, no matter what.  “We all bleed,” she would say.  “Everyone uses the toilet.”  None of us are inherently any better or worse than another.  This is a message I seek to instill in our sons, both of them.  It is a message of self-confidence that our youngest will need to draw on time and time again as others may think they are better than him just because he is wired differently.

“You’ll get by in a crowd with someone pushing you.”

My mother refused to let me stare into mirrors.  She prided herself on getting dressed in five minutes and laughed that it took my dad longer than it took her to primp and prepare for a dinner out.  If I ever felt self-conscious, she would say, “Who the hell is going to be looking at you anyway?”  It sounds cruel, but it wasn’t.  The point was to realize that none of that matters.  We all have insecurities, and in a room full of others with their own insecurities, ours will not stand out.  We should walk confidently, no matter what our own imperfections.  We should walk tall no matter our differences.  I want our son to know he is as good as anyone else.  Anyone.

“It doesn’t matter if you are a garbage collector.  Just be the best garbage collector you can be.”

As kids we were encouraged by our parents to push ourselves, to stretch and to challenge ourselves outside of our comfort zones.  The goal was not fame or fortune, though let’s be honest, those were not to be dismissed if possible. But we were taught to find something we could do well, and do that.  Walk tall, be yourself, but work at it, hard.  Laziness was not tolerated in a house where by 7.00 am vacuums were out by and coffee was being served to foremen of the various building jobs.  Just be the best you can be.  We seek every day to help our son with FASD to find and celebrate his strengths, to build on those things he is naturally good at, his music, his gymnastics, his joy, his determination, his strength.

“Who don’t like shouldn’t look.”

Mom taught us not to care what others thought.  As long as we were walking tall, pulling ourselves up when we fell down, so long as we were true to ourselves and trying our hardest, it did not matter what others thought.  As we sat yesterday on a London underground train, this phrase came to me as I stared at the man staring at our son’s beloved Egyptian pharaoh headdress.  “Who don’t like, shouldn’t look.”  Buzz off, man.  “Go pound salt,” she would have said.  You do not know what you are seeing.  This child is braving a world of loud noises, confusion, changing scenery, not fully understanding where he is going but he is here, and doing pretty damn well.  If you don’t like his headdress, don’t look.  If his silliness bothers you, it’s not his problem.

“Look for the silver lining.”

I remember many a car ride when my mother would burst into song when she would see the silver lining over a storm cloud.  We were taught to look actively for them, to make a wish on them.  The silver linings are precious.

And this brings me to this morning, to yesterday, to the first day of the adoption, to the tomorrows I know are coming.

My mother would have loved our sons.  Both of them.  Equally.  For who they are and for who they will be.  She gave me the strength I need.  She taught me how to celebrate the potential we all have to be the best we can be.  She never defined success narrowly.  She knew that what counted was the effort to be the best we can be, each of us, in our own way.  She always understood we all get by with the help of others.  She would have loved to see how we pull together now to help each other achieve.  She would have loved to see our family, community, friends all join to help clear a path for our son to soar along at his own speed.

“Life is not fair.”

She prepared me for that day when my blind optimism was tested.  She did not believe that life owed us anything.  She was not one to let me wallow in self-pity.  She would tell us to just “put one foot in front of the other.”

My sons will never know my mother.  I will never know exactly what she would have said to our youngest.  How she might have instinctively tried to help him.  What she would have said to help me help him.

But I do know something.

I cannot sit here on this Mothering Sunday without honoring her, thanking her, reaching out to her across the years.  I used to think she had it all together.  I used to think there was a Plan, that my parents knew all.

I see now this improvisation we call parenting is much more trial and error than I realized it would be.  We are winging it almost every moment of every day.

I used to think Special Needs Parents were some sort of saints, some ‘other’ kind of parent.  I never knew that being a mother of a child with special needs just meant applying all those lessons we already know about parenting, about being good people, testing those maxims a little harder, stretching the truths a little further.

My mother loved the flowers of Mother’s Day season.  She immersed herself in the moment of their becoming.  Forever in my mind I will recognize her soul in that uplifting feeling that comes when you first see a spring blossom.

And here we are, in a different season, still celebrating the same things.  Our youngest son has always greeted every daffodil he sees with excitement, eagerness.  His spirit seems to leap when he sees them – he can spot a narcissi or daffodil from a hundred yards away and he runs toward it.  He has taught me that they have a lovely smell, but you have to really stick your nose into them, sometimes to the point of getting pollen on your nose.  His smiles and love of these cheery flowers is something that makes us all richer, happier, more fulfilled.

I think my mom would know exactly how to help this child to be the best that he can be.  I think she knew somehow that beyond all my wanna-bes, all my visions of changing the world, she knew that one day that being a mom would be my greatest role.

I asked her one time if she thought I would make a good mom.  I will forever wonder what flashed through her head in those long moments she stared hard at me.  I was expecting an immediate reply.  I was uncomfortable. She was gazing deep, looking at me from head to toe, inside and out.  That pause used to bother me, I played it over and over in my head. Insecure, wondering if she doubted me.  Now it comforts me, because I know this was not a reflexive answer, but a considered one from a woman I consider one of the greats, “Yes,” she said.  “Yes, you will.”

I hope so.  I am trying to be the best mother I can be.  I get by with all of those in this crazy, lovely, wonderful crowd who are pushing me, quite often when no one is watching.

And on days when this life seemed too much, too hard, too unfair, she would have said, “I wish you bluebirds.”

I never knew exactly what that one meant.  But it was somehow a kick in the ass to get out there and find the beauty, from a Frank Sinatra song about not being able to be with someone you love:

I wish you bluebirds in the spring, to give your heart a song to sing,
And then a kiss, but more than this, I wish you love.
And if you like lemonade to cool you in some lazy glade,
I wish you health, and more than wealth, I wish you love.

 

 

 

 

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.