Clearing Shelves Stacked with Someone Else’s Dreams

By SB_FASD

Oh sweet child, today you asked to clear out your room. You have been saying for weeks that you wanted to do this. I kept finding excuses. I didn’t want to face what I knew was coming. But you dove into the project. Knowing how this sort of task can easily overwhelm you, I calmly said I’d help, even though it was early and I was tired, un-caffeinated and unconvinced.

And soon there we were, knee deep in the tomorrows I had thought you’d have as you swept away my earlier visions of the way your future might unfold. The future I was creating for you in my mind, before we understood your FASD.

“You bought me too many books.” Yes, I suppose we did. I said, “I know, but we used to read them together.” You replied, “I don’t like books with too many chapters, too many words.” I know that now. You suggested we could get more workbooks. You wanted to keep exercise books. “I have too many copies of ‘Alice in Wonderland,’” you said. Because, my son, at one time you were completely and utterly engrossed in Alice, you fixated on the fantasy world. We watched movies. We read books. We watched an Alice ballet. But okay, now I see you are ready to move on.

“These books are baby-ish,” you said, sweeping away the books about bugs, about colds, about how children lived in Anglo-Saxon days. The books with pictures that we spent hours looking at, making up stories when reading was too hard. The kids’ joke books you loved but never really ‘got’. This isn’t the first time we have culled these shelves. Some of these books are ones we thought might give you some important info in a more accessible way. But you’re right. They are for much younger kids.

Some books stayed – Spy Kids, all the playbills from the many plays you have seen, a collection of the later Biff and Chip books, the Diary of a Wimpy Kid series. And of course Amelia Bedelia. She is so literal and she tries so very hard, just like you. You still laugh when she gets herself into a pickle every time.

We understood at a point that you do better with chunks of information, accompanied by visuals. So we have a large collection of DK Eyewitness Books that you and your brother used to page through – covering everything from the weather to history to the Titanic (that one you kept).

Book by book, I had to bite back my regrets. All those Dr Suess books that I adore but that I know now must have completely confused you with their nonsense words and silly pictures. I held in my arms some of the great children’s literature I loved as a child, trying to decide if I am ready to let go of my dreams of reading these with you, knowing I must.

And the toys and games. “I hate puzzles.” I flashed back to so many times we tried to do puzzles with you as a young child. You would get so frustrated. You had to try the piece every which way until it eventually fit. Even if it was a triangle into a square hole. You kept at it, determined. You did eventually get there. I had no idea then how your brain struggles to think abstractly. That practical trial-and-error approach was you trying your absolute hardest. A reminder for me of the way you learn best – hands on, experientially. I stared at the newer 120- and 200- piece puzzles, agreeing we could get rid of those now.

Today you were prioritising you. Rightly so.

I am proud of you. It can’t have been easy to move me into action. I am sorry it had to take such sheer determination on your part. I should have been listening more closely.

But I would be lying if it didn’t admit that I spent the day grieving in a way I haven’t done in a long time. I spent the day missing those earlier years when it was easier to get you to do what I thought was best. I spent the day second guessing myself, as I accepted again that I don’t always know best. You have always shown me what you need. How hard it is sometimes to listen.

We say it all the time, that young people with FASD are often socially and emotionally half of their chronological age: “stage, not age.” But these teenage years are tricky. That ‘rule’ doesn’t apply evenly and it’s not consistent. It’s dependent on lots of things. In a day you can go from being quite surprisingly mature to acting like a much, much younger child. Sometimes your insights catch my breath. Other times, I feel fear when I have to repeat something very basic that I know you once knew. I really don’t know everything that you need these days. You are a glorious mix.

You are all about music, electronics. You have taken on board the idea that sensory items help you, so we kept a shelf free for the slime. Today, in a new toy store full of toys, you chose a sensory bed tent. It has a light inside. And a unicorn on the outside. You still want us to create a stage in your room with curtains that open and close with a string. We will try. I am not convinced you really wanted to get rid of the dreamcatcher and the emoji pillows. I was surprised you asked for us to bring the Lego back in your room. Then I grew worried as storm clouds gathered when you wanted to recreate a Lego schoolhouse that you long ago smashed apart. The pieces are mixed in with thousands of other Lego pieces now, making it unlikely we can recreate that model.

So, where is all of this going?

When we first started pulling apart your room, my original plan was to put those DK Eyewitness Books on a bookshelf in another room. But I have been staring at them long and hard. When you want to know something, you google it. You learn from YouTube videos. This is a real strength you have, your ability to navigate online. You are not ever going to go to those books for information. I get that. I have to let them go.

I have to let it all go.

I love you so very much. I know these things mean nothing in the long run. You are doing so very well, as you learn to understand your body and your sensory needs, as you show us your strengths that come from having a mind that works differently.

You have a rack full of sparkly dress up clothes. You love performing.  Your Christmas list is full of special lights, music and technology. Your dreams are in some ways larger than life. But who among us dares to limit you? You are so talented, who knows where they may lead? So, yes, I will sweep clear those shelves so you have room for disco lights and microphones and amplifiers and speakers.

I promise I will try to remember that in your 14-year old body is a unique and growing young soul that needs to feel comfort and nourishment in the items that surround him, whose room should not be a place where he looks around and feels inadequacy in failing to meet someone else’s vision.

It had never occurred to me that you saw those things in your room as my failure to understand you and what you really like.

Dear amazing you, thank you once again for teaching me what I needed to learn.

(Now, how do we get rid of all of this stuff out of our bedroom, where it landed throughout the day, leaving me with no path to walk?)

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An Open Letter to Prince Harry and Meghan (and every parent-to-be)

By SB_FASD

Dear Prince Harry and Meghan,

You are expecting a baby! Oh, the dreams and hopes and joy of it all. Congratulations from one British-American family to another. Each of us wants a bright future for our children, no matter how many ‘u-s’ we have in our words or ‘zeds’ that fall by the wayside.

That is why I had tears in my eyes when I read the news that at an important function abroad you gave an official toast with water. The announcement that you both are going alcohol-free throughout this pregnancy literally stopped me in my tracks. I suspect my grin could have been seen from outer space that day.

Parenthood changes us. We protect our kids and do the best we can for them. With one simple choice you both have shown leadership of the kind that can transform lives, change tomorrows. I wanted to share my deep respect and appreciation.

You see, I know what it’s like to parent a child who was exposed to alcohol in utero. I have seen a young toddler unable to process the sights and sounds of daily life, looked into the eyes of a distressed young one whose brain can’t handle too much input without kicking into the fight and flight mode. I have literally held with a mamma-bear hug a dysregulated child who was lashing out in distress – while neither he nor I could understand why. I’ve been in the schools, working with teachers who were frustrated that he couldn’t focus, sit still, remember. I’ve spent hundreds if not thousands of hours in waiting rooms, doctors’ offices, talking with therapists, trying to understand why he has trouble eating, why some bones are fused together, why he can’t grasp abstract concepts. Gathering diagnosis after diagnosis until at the age of 10 we finally learned our adopted child has a Foetal Alcohol Spectrum Disorder.

I will never forget that moment when it hit me. This sweet, musically talented and physically precocious young child has organic brain damage. “He will need support for the rest of his life,” the doctor said to us that day. We are older parents. Those words struck us with fear.

I wish you could know the sweet sounds of my son’s laughter, watch him dance with abandon and flip on trampolines with great skill, see how his smile lights up a room. We all want the world to see our children shine. But I won’t sugar-coat it. There is great pain and frustration in his world. It’s better now that we have the diagnosis and we have been able to access appropriate schools and therapies, but he is vulnerable in a world that does not understand him, no matter how hard he tries. So we are using these teenage years to help him have the words and strategies he will need. Fingers crossed, so far he is one of the ‘lucky’ ones. The post-code lottery has worked in his favour.

Too many people with FASD end up with secondary mental health problems – an area I know you care deeply about. Without diagnosis, appropriate support, alternative parenting strategies and the full weight of the resources this amazing NHS and educational system can provide, these young people fall through the cracks, families strain and sometimes break under pressures and the brilliant sparkle in our loved ones’ eyes becomes dull. Adults and young adults with FASD can end up homeless, addicted, in prison, sexually vulnerable, straining the resources of a system that could have been ahead of things sooner in their lives.

But your actions, your leadership – oh, how transformative and welcome they are.

It’s like FASD awareness has hit the stratosphere in recent weeks. The Deputy Chief Medical Officer Gina Radford convened the first ever government-led meeting with FASD stakeholders as part of an ongoing effort to see what Government can do. EastEnders featured a story line for its 7 million viewers about alcohol, pregnancy and the risk of FASD. The Children’s Minister Nadhim Zahawi, MP met with adopters and carers and discussed how FASD disproportionately affects children in those communities. There are people with lived experience, leading medical experts, FASD groups and MPs and peers who have been pushing these issues for years but perhaps now, maybe now this is a threshold moment for greater change. We hope you might help by encouraging joined-up thinking about how to tackle this public health crisis. Perhaps it’s time for an FASD summit. We’ll be there, supporting progress in ways big and small.

Statistically there are more people out there with FASD than autism. It’s a ‘hidden epidemic’. Because of stigma, lack of professional training and old-school thinking, most of them will be undiagnosed and will struggle unless our leaders change things.

FASD is the missing piece of the puzzle that anyone who cares about child mental health and the success of special educational needs and disabilities reforms in our schools should be examining. FASD needs to be recognised as the neurodevelopmental disorder it is in order to open doors for access to services.

By announcing both of you are abstaining from alcohol, you hit the mark perfectly. Partners play a huge role in supporting alcohol-free pregnancies. No alcohol, no risk. #049.  Please consider taking this to the next level and help people understand why you have made this choice. You know the power that comes from recognising the courage of those fighting battles that others do not see. As you have done for others with disabilities and mental health challenges, you have validated and honoured our son’s struggles. Thank you.

The entire FASD community is wishing you a healthy and happy pregnancy. Cheers!

****
This post also appeared in the Huffington Post, 8 November 2018.

Be an Adopter

By MB_FASD

It’s National Adoption Week and the theme this year is “The Adopter”. Since that’s me, and my wife, and also my mum, I thought I’d write something for the occasion. Hopefully, some of you out there thinking of adopting will find a spark here, some inspiration that will confirm that for you adoption is the right thing to do. I really do hope so. Adoption is a wonderful experience. For you. For your child. And for all involved. As long as it’s done right.

First of all, do it for the right reasons. Be sure you’re not wanting to ‘save’ a child. You’ll hear from friends and family that you’ve done a wonderful, charitable thing by giving a home to a needy child. If that’s your reason, don’t adopt. Adopt because you want a family, or you want to complete your family. Because you want the love and joy a child will bring into your life and have plenty of your own to share.

Secondly, understand that adoption has changed from the old days, when those of us who were adopted as babies were likely to have been given up by single mothers shamed into allowing us to be adopted by the dark, somewhat unforgiving social mores of the time. We were largely newborns, healthy and (at least in my case, handsome and adorable 😊). Those kids available for adoption now are still adorable, but they’re unlikely to be newborns and their pathway to adoption is different than mine. They will have suffered neglect, early life trauma, may well have a disability and/or other health issues. They may have an attachment disorder. Or, and here’s why this blog is writing about adoption, they may well have a Foetal Alcohol Spectrum Disorder (FASD).

Statistics on FASD are not good amongst looked after children up for adoption. The condition is very much under-reported, under-diagnosed and poorly understood or recognised by midwives, social workers, GPs and even Paediatricians. A study in Peterborough showed that 75% of children available for adoption had been exposed to alcohol in utero. That doesn’t mean the kids have an FASD, but the risk is there, and it is significantly higher than for the population as a whole.

As an adopter, bringing a child with FASD into your life will be a huge change. Our son has brought music and performance into our home. He takes us to places we would otherwise not go. He has brought the widest smiles of joy. He has taught us much about ourselves and our capabilities to care.

But it isn’t easy.

Kids with FASD have executive functioning deficits which means they constantly need help to organise themselves through life. Many have learning disabilities. They have sensory needs that are difficult to meet. They can meltdown with a depth and severity that is extremely hard to manage. Doctors fail to recognise the condition. Social workers don’t write up maternal alcohol consumption in notes, making diagnosis harder later on. Therapists of all kinds don’t know about FASD and struggle to adapt their services for our kids.

To be an adopter, you will need deep reserves of resilience and humour and love to do everything your child will need, and everything your wider family will need. You will have to possess a desire to learn all you can to support a young person, and to show your family, friends and the professionals in education, medicine and social work how to support him and you.

Society also needs to better support adopters who make the decision to adopt a child with FASD, or one who may well have the condition (you might not know for sure since FASD is so under-diagnosed). To be an adopter, you’ll become a campaigner for recognition of FASD in the educational system. You’ll become an advocate for the wider needs of families with kids with SEN, things like more respite breaks (or indeed access to respite breaks at all!!) and for the reasonable adjustments all institutions should make for kids with a disability under the 2010 Equality Act. Sounds scary, but it’s doable. You’ll be a better parent for meeting the challenge.

So, be an adopter of a child with an FASD. Go into it with eyes open. Read up about FASD. Join support communities like FASD UK’s closed group on Facebook. Get materials from NOFAS-UK and other groups working on the condition.

And if, after a good hard consideration of the idea, you think you’re up for it don’t let four letters and all they mean deprive you of the love a child with an FASD can bring into your home, or stop you giving them the loving home they need to thrive.

*********
For more information:
National Organisation for Foetal Alcohol Syndrome-UK (NOFAS-UK)
Adoption UK

FASD, Teens & Technology – What’s a Parent to Do?

By MB

A theme kept popping up at our support meeting recently. It provoked, as it always does, a lively series of comments with distinct points of view. Do you let your kid/s have access to technology. How much access?

It’s something we thought long and hard about long before our younger son was diagnosed with FASD. His older brother loves his tech. He’s a good programmer. He’s a skilled gamer. His understanding of tech is strong and his interest high. So little brother was introduced to computers early on. And we had decisions to make about screen time.

Managing kids’ access to technology is a difficult question for all parents. How much time to allow your youngsters on their phones, on games consoles, watching TV? When do you let them have a phone? How do you keep them safe online? How to manage social media when bullying, sexual exploitation, financial fraud and other issues are so rife?

How much harder are these things to manage with an especially vulnerable group of kids like those with Foetal Alcohol Spectrum Disorders? How can you keep a child safe online when their ability to read social cues is, at best, extremely limited? How can you prevent a child becoming obsessed with an app or a game when repetitive behaviours are a known feature of their condition? How can you keep a child from seeing inappropriate videos when their ability to search for material and use a device far exceeds their capacity to understand what they might be about to watch? Is it wise to give hundreds of pounds worth of phone, or tablet, or laptop or console to a child who can suffer from meltdowns at frustration and risk breaking them?

Neither the questions nor the answers are simple, and they vary child by child and across family circumstances. There is no right answer. But, for what it’s worth, here’s how we have managed things with our 14-year-old with FAS.  First of all, we gave him simple rules: not too much skin, no rude words, no violence no talking with people you don’t know in real life. By and large, for the moment these still work. He explores the edges of the rules, but doesn’t jump in and swim past red lines. He internalises what is right and wrong in a fairly rigid way, and has done this also with online life. Even to the extent that, when watching his favourite band Little Mix, he won’t watch videos of them dancing “dressed in porn”, as he puts it. (Not quite sure where he picked up that word, probably an internet safety class at school.)

So, as long as he follows the rules, we let our youngster have more access than many would think is wise. But for him it works. It isn’t perfect. He has, in frustration or in the midst of meltdown for other reasons, broken phones, tablets and bluetooth speakers galore. This is the easy bit. The organic consequence when something gets broken is that he is without it for as long as it takes to replace it. And we don’t hurry replacements. Everything carries replacement insurance. Either the Amazon Fire for Kids (which they really do replace without asking why) or just phone insurance that pays for the next when a phone is broken. The consequence of delayed replacement is important, it follows naturally from the breakage and emphasises that this is something that can be accepted as resulting from a symptom of FASD, but not otherwise. He broke a laptop two years ago and we are just now thinking about replacing it.

For us the type of device acceptable was also easy. All of them. Any of them (within our budget). They each have a purpose, a different use and each can be valuable in its way. The Wii is now an ageing console, but its games still have a place in our son’s life. They tend to less violent, less scary – much more suitable for him than many of those on offer on other consoles. From the simplicity of Wii Sports, to the deductive reasoning needed to complete Lego Harry Potter or one of the Hannah Montana games, it’s amazing to watch as his thought processes strengthen as a result of puzzling out parts of games involving characters he loved. These were, genuinely, life skills he was learning. For fun, he learned to make movies with one game and to sing his favourite songs with others. The Wii will probably soon have to be replaced with a Switch, but its role will be the same.

His tablet, restricted to appropriate content, was a real boon too – before it was broken. (Still not replaced.) For our son, a cartoon like Tom and Jerry can be a tool for building social awareness. He showed us a picture of an angry character with a bright red face – “look, that’s what I feel like sometimes!”. He learns social lessons from his favourite YouTubers. Their extreme actions, looks or sounds show him the boundaries of acceptability. He watches things time and time and time again, figuring out what is socially acceptable and what is not. He also made hundreds of videos of himself making faces, saying things different ways – we believe this was his way of exploring how to act in situations. For a kid who finds social cues hard to read, this kind of education is vital. He doesn’t really watch much TV. He has a mini-DVD player and watches movies at his own pace, in his own way.

From his phone he gets music. The love of his life. Streamed music. He uses it to calm himself. In an evening after school he will rock in his bed to loud, loud music. Calming himself. Erasing the stress of the day. Building down from potential meltdowns. It matters so much. The phone also works to connect him to friends. Being with someone can be hard for him. Sometimes joint activities don’t go well. Social situations can be hard to navigate. Rigid thinking can bring tensions. Kids that both have multiple disabilities can easily misunderstand each other. Being with them across a distance of miles on FaceTime can be easier. We hear him joking, laughing, talking, enjoying friendships. It doesn’t mean it’s always perfect. One friend couldn’t understand that calling repeatedly as late as midnight wasn’t ok. But, overall, it’s a tool that helps build relationships. It could be dangerous. While he doesn’t (yet) break the rule about linking with strangers, he has been very happy when social media accounts linked to popstars or TV personalities have sent him messages, after he left messages for them. The risk of inappropriate contact is there. And for a child with delayed social development, the risk is heightened. So we talk to him about who he is talking to, and we have access to his devices. We work at keeping him safe.

It’s not just at home that technology helps. In school, the use of a netbook in lessons helped our son to focus before lessons. Typing allowed him to get ideas from his head to the page in a way that handwriting never did. Suddenly, instead of a line he could write a paragraph, as he could type quickly enough to express himself, whereas he couldn’t hold an idea in his head long enough to write it out with a pen.

And this is the future too. The role of technology in our society is growing. It surrounds us, penetrates our lives in ever increasing ways. He will use phone apps to manage his life. He will be able to speak to his phone to find recipes, generate a shopping list, buy groceries online, do other shopping. He already relies on YouTube videos for instructional videos for everything from slime to hairstyles to recipes. Microsoft Office has built in voice recognition software he’ll be able to use to read documents, write them, send emails and more. He will be able to manage his prescriptions and doctors’ appointments through an app, we do already. We are at the beginning of mindfulness apps that help people manage stress and anxiety and contribute to reducing the possibility of meltdown. All this will help him build a measure of independence in adult life that would otherwise be impossible. The opportunities are, at present, seemingly almost limitless.

We’re not naïve. We are aware of the dangers. We guide our son to use online services and entertainment as safely as possible. We know that for many the use of screens is a huge problem. That obsession with online content is a real risk. That there are predators. That some are unable to have access to games with in-game payment safely. We know that what I have described is our reality, not that of others. If things change, we will change our rules.

We have chosen to work hard to help our son access technology because for our kids technology is the future. It can help them navigate life with FASD. It can be a massive support. They will have to deal with it as it becomes omnipresent in all walks of life. Our job is to help our son do so safely, to help him thrive. In the meantime, if you stumble across his YouTube channel, give him a like and leave a positive comment, it means everything in the world to him.

Shifting Sands

By SB

Once upon a time a little boy used to struggle mightily when going on family holidays. He would become so bewildered by the many changes his brain could not process that he would rail against the world, against us. Strong and fierce in his moments of distress, a sadness shadowed us at these times when we were supposed to be most happy. It was heart wrenching. Deflating. Scary. Lonely. But this year, something magical happened. Sometime between then and now, our little guy passed some unknown threshold. He powered up to the next level, became better armed and was more ready for the challenges.

Yes. We had two whole weeks of a lovely and soul-refreshing holiday at the seaside.

It was spectacular. Glorious. An experience I won’t ever forget.

There was a sign at the top of the steep hill we had to walk down to get to the water. “Apologies, beach steps are temporarily closed due to shifting sands. Please use the alternative beach access.” This in a nutshell explained how we got here.

Our son has a Foetal Alcohol Spectrum Disorder (FASD). His brain wiring was affected by prenatal exposure to alcohol. Like many with his condition, he finds it really hard to control his impulses when he’s under stress, when he processes new information and when his senses are overloaded with unusual sights, smells, textures. In other words, going away on holiday is the perfect storm for a person facing the cognitive challenges of FASD.

Some might think the reasons why our holiday went well this year were just because he’s older now and because we went back to a familiar place. Yes, these things helped immensely. But thinking that was the secret to success would be ignoring the two years of hard work he has done since our last holiday to better understand himself and his needs. It would be ignoring the way we took on board advice and structured this holiday to maximise our chance of a positive outcome.

The game-changer is there are teams of experts helping him, helping us – at the specialist school he now attends, in counselling services for those with intellectual disabilities and with the help of experts who work with him on issues related to gender nonconformity – all of which is coordinated under the guidance of a paediatrician who understands how his FASD and co-occurring conditions all inter-relate. He was diagnosed at 10 and in the time since we as a family have learned alternative strategies via our interactions with experts and others with lived experiences via online and in-person support groups. We have tossed traditional parenting out the window and have tried to create an environment where our little one can relax enough to begin to grow. It has taken years and years to get here.

While each day of our holiday had its challenges and while we have a long way to go, the point is – we did it. We listened. We worked hard. We adapted. And yes, we did it!

I can’t tell you how I want to sing that from the rooftops, now, before we settle back into our less-than-perfect existence. I wish I could send that message back to myself a few years ago, for those days when I thought it would never change. When I looked into the future and all I could see was doubt and fear as to what the tomorrows might hold for our little one.

I want to send out a message to others who might be feeling depressed, like I was then. I want to say, “Hang on. Rattle the system. Make the professionals SEE your child. It’s not easy but it’s possible. If we could do this, so can you. Stay strong. Stay positive. Feed the future with your positivity and belief it can come true. Find a network. Build your support system. Dig deep. Celebrate the successes. They WILL come.”

Special needs parents up and down the country are struggling right now to keep their heads above water, to stay optimistic in the face of some of the most daunting days anyone can experience. There is too little available for children with additional needs during the holidays, too little respite for families who are trying to do the right thing but who need help. For a long time, our son was able to fit into other mainstream summer programmes but as he is getting older the options are less obvious. Facing the lack of an appropriate summer programme for someone with FASD, we are creating a pilot project with some related organisations to see if we can change that too.

What makes me really sad is that the few services that exist function mostly on an emergency basis and too many with FASD are denied access to these services. Our son who had been running away from home, playing with lighters, refusing school, destroying his room and his belongings has now learned some coping strategies and those behaviours are no longer a part of our lives. But he’s still just 14 and there is a long road ahead. Now that he is at a calmer place, surely NOW is the time all these therapists and experts should work more intensively than ever with him to teach strategies for a lifetime – now, when he’s most receptive to learning them. We beg them, please don’t spit him out because he is coping better. His brain damage is not going away. Every bit of support, every coping mechanism he can learn will help him contribute to society in ways big and small. His voice matters in a world that too often refuses to hear or see people who are different. Help us help him.

Everyone is focused on child mental health, at least that’s what the sound bites say. As part of that, let’s really focus on making support available over the long-term for those with FASD. The laughter of a child on a holiday is such a basic rite of passage, but for some it is hard-earned and to be celebrated. Thanks to all who got us to this place and here’s to better tomorrows for all who are struggling to make these summer days shine. The sands do shift, but still it is possible to find alternate routes. And to find joy along the way.

(This post also appeared 15 August 2018 in the Huffington Post UK under the title, “Shifting Sands and Special Needs Parenting”.)

 

 

Holidays Are Not Vacations

By SB

“Holidays are not vacations. Try not to confuse the two.”

This advice was passed along to us at some point way too late in our parenting adventures. We are still trying to absorb this wisdom.

We have been there. The over-scheduled holidays. The overstimulating holidays. The attempting to act like all is ‘normal’ holidays. The ‘we-really-need-this-so-we-are-going-to-try-this-even-if-it-kills-us’ holidays. The ‘ready-to-go-home-after-two-days’ holidays.

Every kid loves to go to a theme park, right? Every kid loves to play at the beach, right? Every kid loves the excitement of a road trip, right? I did when I was a kid. They were some of the best memories of my life. I want our children to have those memories too. And so goes the record in my head.

Until there you are, too many miles down a highway with a child in full meltdown in a car. Kicking, screaming, throwing things. You stop at the first stop you see – a place advertising a garden café…and then you see this garden doesn’t have grass but little stones. Your 12-year old fully dysregulated child picks up hands full of them and you really don’t know what to do as they are sailing through the air while other customers stare at your horrible parenting.  Or there’s the time you stop because driving is no longer safe and your little one is walking with purpose along the side of a highway, refusing to get back into the car, for miles with your husband slowly creeping the car forward behind you both. Or the time when he threw a big rock so hard outside a 400-year old cottage your extended family members had kindly rented, hitting your husband in the face and you had to run off after your child to make sure he didn’t get lost in this new place while your husband was still bleeding.  Or the time he went missing at a cliffside theatre and you found him, just moments before they called the helicopter search team. He was in your car blasting music and rocking – he had found a quite space and was using calming techniques you had taught. People wondered why he was not punished that day that scores of people were looking for him. You were just glad he was alive and you let him see you were proud of him for finding a calm space.

These are just a few snapshots. For those raising children with Foetal Alcohol Spectrum Disorders, most of us have these stories. FASD makes it hard for our little ones to adapt to new places, to process all the alien input and to understand the new expectations. They become overloaded by sensory input and anxieties to a point where they simply can’t do it anymore. And then wham. We have liftoff. Or for some, it’s shutdown.

I keep remembering a work trip I took to Japan. I was traveling by train, but something was wrong with my ticket. I got stopped at a gate and there was no one there who could answer my question – none of the signs were understandable to me. No one in authority spoke English. It was all completely confusing and overwhelming. The only thing that kept me from panicking was one person I knew who just waited for me on the other side of the gate. He said he wasn’t going anywhere until he knew I was okay. He didn’t care if he missed his train. He reassured me it would be okay. I remember that day and I try to be like that for my son when I know he’s having trouble. To let him know I am there and waiting for him, to reassure him this moment will pass, we’ll find a way forward.

Children with FASD need structure. They need to know what to expect. One year, long before our son’s FASD diagnosis, there was a blackboard in one of the cottages we rented. Our little one started writing a timetable each day in chalk, just as if we were in school. He was showing us what he needed, just as he always has done. We didn’t get it. We didn’t listen to his needs. We had a truly dangerous car trip one day during that holiday, where he kicked so hard he almost made contact with his dad’s head as he was driving. Now we print out pictures of where we are going. We show him on maps. We go back to the same place. We will never repeat the disaster of the trip where we stayed in five different places so we could do touristy things that we thought would be fun. How wrong we were. Of course, cash-strapped, we were only too aware that we were paying hundreds of pounds for the disaster that was unfolding. That fuelled our stress, his stress, the negative cycle. We needed to learn to slow down. To keep it simple. To take cues from our son with FASD.

We have finally learned just how anxious our son gets in a car. Now that he has the words to tell us, it’s humbling. No wonder he was melting down in the cars. I would be too if every unexpected swerve, every beep, every light, every car heightened my danger alert, if even the direction of the windscreen wipers mattered to me. This year, we are trying something new. Every other family member has already driven to our destination at the tip of Cornwall. Tomorrow, my son and I will take the train.

It will either be the best idea ever or it will be a disaster.

Ever hopeful, I am counting on a win.

We also for the first have one of his younger friends staying with us, so hopefully it will help to have someone to play with. Her mum is staying with us too, someone who ‘gets’ our son and his needs.

I also did something a bit bonkers. I have chopped my hair and it’s dyed bright pink and blue. I was too hot on too many London commutes. I thought this might be good for a bit of fun for the holidays. But walking through town today I realised there is a side benefit. People are staring at me and my iridescent hair and ignoring my son’s long hair and skirt for once. Interesting indeed.

This morning, while the first pictures started appearing on social media of dad, brother and friends at the beaches in Cornwall, we were sitting in a familiar local café in our hometown. I was trying to ignore the side glances that my son didn’t notice. I was thankful that at least he was eating, even if it was a burger at 10.00 am with cheese on it, which he’s not supposed to have due to a milk protein allergy (I weighed the slight tummy upset versus the protein boost and took a chance). And as we chatted, the anxieties started pouring out. He doesn’t want to go. He wants to stay here. He’s been to this one town in Cornwall too many times. There are no shops there. It’s boring. He needs to stay in another place. The last place he stayed in Cornwall with his school had ants in it. He’s never staying there again. We need a schedule. How are we getting there? Did Dad bring his stuff too? Am I sure? How are we getting to the train station? That’s too long on a train. Let’s just stay here. What about the dog? What if she’s lonely. And on. And on. And on.

Honestly, what I really need is a vacation. With umbrellas in icy cool drinks. The sound of nothing but lapping water at the pool’s edge. Sleeping late. Going nowhere. Just silence. Peace. I really need a break. I admit that.

But I am still glad for a holiday. I know there will be moments of exhilaration by the sea. I know that forbidden Cornish ice cream will bring a huge smile to our son’s face and that might just make up for the sensory discomfort of sand between toes and gooey sun cream (and tummy upsets from too much milk). I pray (even as I am not the praying type) that this time we will have fun. And maybe, just maybe as a family we will relax. I am hoping I come back replenished.

What I will never do is blame our son if this goes wrong. Because it will not be his fault.

He has already expressed his worries and his concerns. There is no doubt, this holiday is about me, about us, our needs and our desires. It is simply not fair to blame him if he is unable to cope. I will give him every tool I know how to help him, but this…this is on me if it goes pear-shaped.

And if it works as we hope it will, it will be because he has excelled himself with immense effort and increasing skill at self-regulation. If we do indeed have a good holiday it will be due to the understanding of all around us, to the structure we have put in place to give him the best chance to succeed. It’s not just going to ‘happen’. This new approach has been in the planning phases for two years, since our last holiday and all the work we have done over many slow days trying to build up to a place where he is able to state his needs and suggest strategies to cope. It’s a work in progress.

Stay tuned.

And if you see someone on a train or a plane or in a cafe or convenience station who is struggling. Just keep walking. And give them all a little smile of encouragement.

But if the mum has bright blue and pink hair, please stop and say hi.

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Check out this Oregon Behavior Consultation video for tips on preparing for holidays for those with FASD. They also have a holiday planning worksheet. It’s focused on winter holidays, but the advice is golden for any time of the year.

 

 

 

Gender Identity, FASD and Parenting in Uncharted Waters

By SB_FASD

What can you say to a bright soul who just simply ‘is’ – beautifully, wonderfully ‘is’ despite being pressured by the world every day in 10,000 ways to conform, to fit in, to adapt? What can you say to a child who doesn’t see the boundaries others hold dear and whose perspective is governed by a strong and vibrant vision of what is right for them?

What do you say to a toddler who puts pyjama bottoms on his head for ‘hair’? Who models himself after a long list of female performers from Cher, to Hannah Montana (but most definitely NOT Miley Cyrus), to Sophie in Mamma Mia, to the ever-charming Miranda Sings? What do you say to a child who for years yearned for a wig, who made anything he could find into a headdress that would have hair hanging down his face, who asked for night caps that he pretended were wigs, who asked you to crochet fake wigs, who would cry and sometimes rage when he could not go out looking like he wanted to look? What would you say to the kid who in every charity shop you went into headed straight for the skirts, seeking the ones that flow and twirl, preferably pink and possibly sparkly? For years and years. This didn’t just crop up. It’s been constant and steady.

We didn’t get it. We redirected. We had a stock of ‘dress up’ clothes in the house for performing. But still the displeasure and unhappiness and sometimes meltdowns as we were leaving the house – the sneaking ‘hair’ into school bags, the wearing sparkly clothes under more boring clothes.

We were scared. Our son has a brain-based disability. He has a Foetal Alcohol Spectrum Disorder (though we didn’t know that until he was 10). He is at risk out there in the world. We worried he would be simply too vulnerable if we allowed him out of the house dressed the way he wanted to dress.

And then in the post-Brexit-vote days a young gay man was brutally attacked in our town by six people. Yes, we were reminded we have a reason to be scared, to want to protect our son.

But over time we realised that the best protection we could give him is a positive self-image. My mom used to teach me to cross roads confidently and to “smile like you own the world.” “If you hesitate or look like you might run off in a different direction,” she said, “that’s when you get run over.” We lifted the protective dome. Our son at nearly 14 now walks through town dressed in outfits he chooses. Because of his needs he’s never alone – we are always there by his side, staring down anyone who chooses to give ‘the look.’

The mainstream discussions about gender fluidity, gender diversity, trans issues (whatever words are the right ones to use, I am still not sure) seem to not have a place for a kid like our son. We see some really insightful and courageous young people pushing forward their rights to be who they are – these young trans leaders are bright lights in a world that is all too grim.

I am thinking now of a whole forgotten group of others who struggle doubly – people who are gender non-conforming who can’t really understand in what way they are different let alone find words to describe how they feel. Kids who due to the way their brains are wired simply can’t comprehend why people have a problem with them, who don’t understand the sexual or social connotations that others might be tossing their way. Professionals tell us this is in fact a protective factor for the gender non-conforming young person with an intellectual disability. But they can’t really know the desperation of wanting to protect your child – the impact of parental hyper-vigilance on your health and the health of your relationship with your child.

Experts believe that the alcohol that flooded our child’s system while he was in the womb likely impacted parts of his brain that influence hormones and gender identity and the way he understands these things. FASD is itself very under-studied and this aspect is even less so. We are out there in uncharted territory. (We have started a closed Facebook support group on FASD and Gender Identity to try to fill this gap.)

But to the greater world, as a parent in this unknown space you might as well be from Mars. It’s a double stigma. It holds you back. You’re already judged as a special needs parent (someone recently said to me “IF FASD exists…”) and on top of all that denial, people project onto you their own hang-ups about issues related to gender. You try to sweep away all the criticism before it comes. You don’t post pictures of that outfit or an angle that might show just how long his hair has grown. Not because you are ashamed, but because you really don’t have time or mental space for other peoples’ baggage. Your every moment as a special needs parent is spent trying to keep your own home in balance. You’re exhausted. And muddling through. Doing the best you know how to do in this land far, far beyond the traditional rule books.

Let’s face it. The lingo and even some of the politics of the LGBTQ+ community are intimidating. You don’t want to get it wrong. It’s too important. There is no way in the world your little one can begin to access and comprehend the nuances represented by these different terms. No way. At least not yet and not likely before puberty comes through like Miley’s wrecking ball. Just the concept of possibly using different pronouns would be nearly impossible at this stage for your little one to understand. The impact would be impossible for him to gauge since those with FASD have challenges linking cause and effect.

You dwell on issues related to informed consent. It’s a minefield. You have a child whose emotional and social age is half their developmental age. You learn about theory of mind and discover that the reason why your child has a remarkable ability to be who they are is that they are not developmentally able to fully understand that different people experience the world different than they do. You learn from experts that your teenager does not have the same concept of what it means to be ‘a boy’ or ‘a girl’ that others have. You start to worry that your child’s physical clock is ticking much faster than their social clock.

Puberty hits and your kid with the angelic voice literally stops singing because his voice cracks. Your heart breaks.

You are asked by a leading psychologist, “Who’s got the problem?” He’s saying to you that your child is confident and comfortable with his gender non-conformity. He shows you pictures your child has drawn with happy faces and love hearts. Your little one seems happy in himself. That’s what you want as a parent. You hope those smiles survive when facial hair grows. You desperately wish that voice will sing again and you’re simply not yet sure it will.

People think it’s the parents and carers pushing their own ‘agenda’ onto their child. They tell you what they’d do. (Save your breath, if it was as easy as cutting his hair, we’d have done it.) Anyone who knows me knows I am anti-lipstick, anti-heels, anti-sparkle (though I have to admit my repulsion for sparkles has weakened considerably in face of the onslaught). This is NOT me pushing an agenda. But by gosh if I have to, I WILL spend hours watching YouTube videos of various hairstyles and help practice them on the styling heads we now have under our roof – because the thing is, a child with FASD learns in unusual ways. A lot of it is multisensory. If the child has a particular interest, it really helps to develop that, to use it as a bridge. To connect. It’s doubly hard to know at what point this is an obsession versus something deeper. For years we thought the hair and skirts were about sensory needs. Most likely it’s an unknowable combination of factors.

Honestly, I have no idea where all of this is heading. We are pushing no one anywhere. We would rather opt on the side of allowing our child informed consent, even if that means moving conservatively. We understand that perhaps might be compounding anxiety and limiting future options unnecessarily.

But then we hear, now that he’s in a supportive specialist school where staff have specific Stonewall training in these issues, that our child is a leader (their term). That he is helping other children in being more comfortable in their gender expression. That they have never had a student with gender identity issues as comfortable with themselves as our little one is. We get comments on school reports like, “he has managed to express his colourful personality” and “he is not at all afraid of thinking outside of the box.” We feel relief that his protective shield is growing stronger.

Just last week his school went to see “Everyone’s Talking About Jamie.” We were nervous about letting our son go on this trip since the theme deals with a teen who dresses in drag – possibilities we have not discussed yet with our son. At the end of the day, the kids came off that bus in a group. Our long haired, bright eyed, beautiful son was in the middle of them. They were elated. They were all together. And he blasted the theme music that night as he fell asleep. He was content.

There is everything to gain from being open to our little one’s magnificence. And by “everything” I mean keeping that sparkle alive in his eyes. That is the goal. Keeping our guy alive and full of life. His life. His very own unique and awesome life.

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For information or support:

Stonewall has some great resources, including for schools
Gendered intelligence 
Mermaids
FASD and Gender Identity Facebook Support Group (you will be asked to fill out some questions before becoming a member of the closed group)

 

 

 

Begging for Support

By SB

There have been times in this FASD journey where I have literally been reduced to begging for the help that our son deserves and needs. Yesterday was another such day. Some boxes had been ticked somewhere in The System. I had been feeling really good for the first time in ages at the support that is in place around our child. It’s been working. It makes sense. The people involved are getting to know each other. There is a common language developing across the teams.

So, of course, without warning, yet another service had decided that because our son was doing well enough (despite having been referred here not long ago due to a series of crises) and because he had had x number of sessions, it was time to boot him out of their system.

Hold on. Wait? What?

Oh no you don’t.

Not yet.

Mamma Bear woke up and with the nicest smile she could manage laid out 10,000 reasons why this was not a good idea. We’d be happy to put all this in writing, of course, not as a complaint, but as a compliment, she said, because your service has made such an important contribution to our son’s wellbeing and because we know statistically he’s just entering the hardest years for those with FASD. You matter. This matters. Too few people out there ‘get’ FASD. We shouldn’t have to waste key NHS resources to help others who might not be familiar with our family and our son’s needs get up to speed on these things. Too often for people with FASD, it takes years for the supports to be finally put in place. Then, when they start working, they are removed. We don’t want that to happen to our son at such a critical time in his life – he’s just turning 14. We could share the stats with you if you like of the addictions, the problems with the law, the homelessness, the vulnerability he is facing as teen with FASD preparing to enter adulthood.

Please, please don’t discharge him from your service. Look – it’s been working.  We just shared with you several examples of how what you have taught him has worked. But let’s be honest, this is work you would normally do with a much younger child. What would normally come next? There are a whole host of other skills he will need to learn and master, other conversations he will need to practice. You can’t honestly believe that we are out of the woods and no other crises are likely to come up?  This service has the ability to see him until he is 19, why discharge him now?  Let’s spread out the sessions…just keep him on the books in case something else heats up. C’mon, let’s think this through.

Please, he needs you.  We need you. Not because what we are learning with you is rocket science, but because he’s now used to you, to this. It’s working. Do you need me to lie and say it’s not? He has a language he uses here. Why should he have to spend a year or more waiting for a different referral, building trust and a way of interacting with another therapist? It makes no sense. Sorry, we know you are not the one who makes the rules, but please don’t discharge him until we can speak with whomever it is who does.

I know I am begging. I am shameless about this. We are literally fighting for our child’s life. I don’t say that lightly, I mean it. We have a few years here to get this right – to give him the tools and the words he will need as he turns toward adulthood. I can tell you stories of people with FASD who we know who didn’t have support and who had to overcome things we don’t want any young person to have to cope with. This support and help matters. How is it possible that a young person with a brain-based disability who is vulnerable in many ways, who has receptive language problems, who is grappling with some of the major issues of puberty magnified by an intellectual disability that makes these years even more of a minefield could NOT qualify for your help?

Absolutely we can help identify specific goals! Absolutely we can work with you on a targeted plan. Absolutely we agree it would be good to get all the professionals around one table to make sure his transition into adulthood is getting in place now while there is time to get it right.

…and so it went…

Another reprieve. Sixteen more weeks. We calculate in our head. This will get him at least into Key Stage 4. This gets us well into the new school year. We will see what happens as these coming months unfold.

For too many, today might have been the end of the sessions. For too many, they don’t even make it this far.

Why is this such a battle all the time? This, in a country that says it is trying to tackle child mental health in a serious way while simultaneously making it so hard to access services?

How is it not a better use of resources to give people skills to be able to help them cope with a lifelong disability rather than waiting until a crisis hits, at great cost to the child/young person and the family? How is it not worthwhile to do more training for all professionals in this condition that experts believe affects more than autism?

How can we possibly leave people with FASD and their families struggling on their own when there are known strategies that can help?

Caring societies are meant to care. They are meant to open doors, make the way easier for those who need an extra hand. They are supposed to enrich the lives of those vulnerable individuals who deserve support, encouragement and understanding.

Not slam doors in the faces of those parents seeking help for a struggling child. Not tell someone whose child has a brain-based disability that it’s their parenting and not compromised brain wiring that is causing the problems. Not kick students out of schools because the educators haven’t educated themselves on the executive functioning and cognitive issues that occur with FASD. These last two haven’t happened to us but they certainly do happen all too often, in too many places.

Yes, today we had a small victory in clinging onto a service that does give us strategies. But we really shouldn’t have to beg.

Seriously, society … we shouldn’t have to beg.

 

 

Always On – Hypervigilance and FASD

By SB_FASD

Hypervigilance is a term that keeps cropping up lately.

I first used it in consciously last month in a meeting with two therapists where my husband and I were discussing our son when he wasn’t present. I was relaying a story about going through charity shops in the town with our little one with FASD. I was talking about how I feel the need to be hypervigilant to anticipate how to deflect the negatives that might come his way – perhaps due to how he is dressed or the way he might be acting. It’s like trying to extend a big protective bubble around my son as he walks through the world, worried that it could pop at any moment.

Mirriam-Webster defines hypervigilance as “the state of being highly or abnormally alert to potential danger or threat.” Yep. That’s me.  It can be linked to post-traumatic stress disorders but that is not what affects me. I just live nearly all of every day in a super alert state, listening, anticipating, waiting, trying to deflect a negative outcome or some situation from spiralling into a fully heightened scene. An article, “Hypervigilance in Autism Parents” struck home for many of us raising children with FASD.

I do not relax. Or very rarely. I realised THIS is why I wake up and watch mindless TV in the middle of the night – it’s the only time at home when I can relax. Everyone is asleep. There is no chance of things going from zero to 100 at 3.00 am.

I am not writing this to complain. It makes me empathise. This feeling that I have is nothing compared to what my son experiences. Yes, I am constantly anticipating, analysing, assessing where things are and where they are going – living on edge of a possible meltdown coming from who-knows-what stimuli next. It is exhausting. It’s not a very nice way to be. How I would like to kick back my heels and sit in the garden with a good book and just relax. This is not going to happen. I’ll survive.

But my 13-year old son, he lives in this sort of state multiplied by 100 or 1,000 times.  His anxieties are through the roof. At different times someone’s breath on a strawberry panics him. A buzzing fly or a pan on the stove sizzling too loudly or a low-petrol reading in the car or whatever it is at that moment – things I do not even notice – can raise his internal alarms so high that he cannot contain himself, let alone explain his fears or his worries. His behaviours escalate and he loses all impulse control. It can be quick and forceful and things can be smashed in the process.

He has been getting some counselling lately that is helping. He’s working with therapists who help him have the words and awareness to identify how he is feeling, to spot when his anxieties are increasing, to put in place strategies for each of those different stages. Where once he only knew two states of being – happy or angry – now he has been learnings there are steps along the way and things he can do (and that we can all do) to help him move down that ladder.

It’s not rocket science – and it is absurd that these sorts of tools are not made more available early on when a child starts showing these sorts of problems. And it is really tragic that many if not most families affected by FASD are not able to access these kind of therapeutic settings that can really change things around.

This week, I have been learning that the therapies help us as much as they help our son by giving us all a common language.

We’ve had a bit of a rocky road this week. Our son’s school went off timetable for a special “Arts Week.” They are doing absolutely amazing things. But it pushed our guy to the edge, if not over. We had a car ride to an evening event at the school where he was starting to become dangerous – the first journey like this in a very long time. In between cursing and bad language and taking off his seat belt and throwing things, he was telling us “I can’t handle it.” “I’m too tired.” “I just want to go home.” “I want to play with slime, that will help me.” In the past we would have kept going, pushing him too far. This night, we honoured him – we listened to what he was saying. We turned around. We went home. He played with slime. He danced in a body sock. We didn’t have a meltdown.

I felt oddly good.

What’s the point of encouraging him to use his words to tell us how he feels if we don’t act on that and show him that his opinion and feelings matter? He identified his feelings, stated his needs, came up with a solution for how to self-regulate. Progress!

The next night, again after a day off their normal schedule, our son was becoming dysregulated at home. I was frustrated, tired, alarmed that things were starting to fly – always worried about breakage, but also fighting that sense of disappointment and fear for the future that bubbles up when I am feeling weaker than usual.  I lost it. I heard myself saying, probably too loudly, “That’s enough! I am stressed. If I had a scale of 0-6 like you do, I would be a 7 right now. I am going to explode. I need quiet. We are both going to sit here, quietly. Don’t say anything. Just sit!”  And you know what? He did. I ignored what others might have interpreted as smirks, because I could see these facial expressions were signs he was nervous and trying to register this unexpected new information. I sat there on his bed with him without either of us saying a word for about 30 minutes – he was on his phone, I was on my computer. Every once in a while, he’d move his leg a bit closer to mine for a scratch. And the scene that had been horrible became calm.

I sat there thinking about what had been staring me in the face – we need to use these tools too for our own stress levels. To build a common language with our son. Why should he be the only one in the family with a stress chart with identified strategies for how to cope? He needs a guidebook for how to help us as well. He is the one with trouble reading others – of course he needs a road map too. I can’t assume he understands instinctively what I am feeling.

I have been learning more about theory of mind. It’s tied up with developmental stages – when a person begins to understand that other people experience the world differently than they do. Some people with various disabilities struggle with this.

I remember our son on the phone when he was smaller, holding up something that my husband couldn’t see on the other end of the audio call – “Here Dad, it’s this one.” One of my favourites was “No Mummy, not there – scratch where it’s itchy.”  He didn’t get it that I couldn’t know where the itch was. Lately I have been increasingly direct with him, saying things others might think are “obvious”. “I am tired and I am going to bed now. Please don’t ask me again tonight for another snack.” Telling him what I am feeling and therefore what I expect from him is working.

I have been taking cues from adults with FASD who find help in mindfulness. It helps me with the hypervigilance to recognise that I have the power in a moment– any moment – to find something to focus on, if only for a short time, to help me ground myself, to slow my breathing. I hope our son will eventually learn more about these techniques. But in the meantime, I can invite him to come sit by the dog and feel how soft her ears are. I can comment on how soft the breeze feels on my face. Or point out how very blue the sky looks. Building blocks. Little moments lead to big breakthroughs. Step by step. I believe we have to see progress and celebrate it, no matter how small.

As I am realising I am in a hypervigilant state most of the time, I am using this understanding to help me better understand my son. I am trying to use the tools we are learning to help him understand not just himself but others too.  But I guess I need to do more to understand me too and what I need. So, yes, the word of the week is “hypervigilance.”

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Some additional resources:

Emotional thermometers and other printable resources from here (there are lots of interesting resources on this site):  http://do2learn.com/…/SocialSkil…/Stress/StressTriggers.html

This ‘brain house’ model is also helpful to teach children about the ‘upstairs brain’ and the ‘downstairs brain’: https://www.heysigmund.com/how-to-teach-kids-about-the-bra…/

 

 

 

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This Parent-Advocate Celebrates Messy Trails and Snails

By SB_FASD

Our son’s taxi was late. He was all ready for school. He had in his bag photo albums from when he was a baby and a clipping of a news story about our local FASD support group. I had work to do, I was feeling pressure. Our son hadn’t eaten breakfast again. We were waiting outside so the dog would not become further excited. It was raining. I was in my pjs. I wasn’t in my mum-of-the-year mindset. I wasn’t there. I wasn’t in the moment.

And then my son noticed three snails.

They were climbing a post by our door. Three different sizes. The biggest one (the mum, he said) was lagging behind.  We stood there, my son and I, for nearly 30 minutes discussing those snails, where they were going, what they were seeing, what they might be thinking. I hate snails. But on this morning, I loved them and was fascinated by them, totally engrossed by them – right there with my son. In his moment. I even learned something watching them come out of their shells when making what seemed like lateral moves around corners from up high.

Sometimes we don’t know where we are going or what it takes to get there. But you do what you have to do. You improvise even if you are not sure exactly where things are headed. You just keep moving.

The taxi came and our little one went off to school. I started thinking about mindfulness and the advice we often receive to simply (!) slow down. I was thinking about the many times our son shows us that due to his FASD, he is mindful of things I often don’t notice. I thanked him before he went to school for being so observant. I told him without him there I never would have noticed those snails today.

I have been busy. Good busy. But busy. The kind of busy that means you go to work early and miss seeing your kids off to school. The kind of busy that when you come home from work, your face is still in the computer when the kids are looking for a chat or the dog wants a cuddle or your husband’s in the kitchen cursing the stove yet again while trying to feed us all. The wake-up-in-the-middle-of-the-night-and-do-more kind of busy. And it was worth it. Probably if I had it to do over, I would do all of that again. I will do all of that again.

But I came across this quote in the midst of this week and it spoke to me about how we define our terms.

I lied and said I was busy.
I was busy;
but not in a way most people understand.

I was busy taking deeper breaths.
I was busy silencing irrational thoughts.
I was busy calming a racing heart.
I was busy telling myself I am okay. 

Sometimes, this is my busy –
and I will not apologize for it.”
                ― Brittin Oakman

 There are lots of ways to be ‘busy.’

There was another piece doing its rounds in social media this week, by Alethea Mshar “Dear Special Needs Mom Who Feels Invisible”:

I want you to know that I see you…I know you feel invisible, like nobody notices any of it. But I want you to know I notice you. I see you relentlessly pushing onward. I see you keep choosing to do everything in your power to give your child the best possible care at home, in school, at therapy and the doctor. What you’re doing matters. It’s worth it.

On those days when you wonder if you can do it another minute, I want you to know I see you. I want you to know you’re beautiful. I want you to know it’s worth it. I want you to know you aren’t alone. I want you to know love is what matters most, and you have that nailed.

And on those days when you have breakthroughs, those times when the hard work pays off and success is yours to cherish, I see you then too, and I am proud of you. Whichever day today is, you’re worthy, you’re good and I see you.

This week some of us brought the voices of many of us to Parliament and to the Royal Society of Medicine. We stood side by side with each other and with medical, educational and epidemiological experts to share the truths that we have learned in our combined experiences as people with FASD, birth parents, adoptive parents, foster carers. We are strong, we are warriors, we are standing firm. Hear Our Voices was the simple but powerful message we carried with us from the thousands in our networks.

There have been some unexpected moves, some lateral moves. Times when we have come out of our shells and out of our comfort zones. We are not entirely sure where we are going. We sometimes feel like we are too busy trying to simply keep breathing that we are not accomplishing what we hope to accomplish. Sometimes it is enough to be seen. But the goal in the end is to be heard and for the messages we are saying to be acted upon.

My son lives in the moment – or as Dr Cassie Jackson calls it, the ‘Here and Now.”  There is beauty in entering into his world – this is what I tried to say to the doctors and psychiatrists at the Royal Society of Medicine. While the medical community and the policy makers and the number crunchers all try to assess FASD from their undeniably important analytical perspectives, we have to take pride in the messiness of being parent advocates. And we honour and deeply respect those of us with FASD who are self-advocates. The most powerful moment of this week was when a teen with FASD spoke her truth to parliamentarians and when they spoke back directly to her, affirming the impact she had made.

We have a right to be at these tables even if we are a bit crumpled around the edges, less smooth than we’d like to be. As real as that life-worn Velveteen Rabbit we tell our kids about.

I’ll admit here among friends that I had to dig the dress trousers I wore that day from the bottom of a dirty laundry pile and my shoes were not shined as I walked into Parliament.  I am sure there is still some sort of liquid vegetable at the bottom of our refrigerator drawer and the freezer cannot close properly because it so desperately needs defrosting. This life is messy.

Being a parent advocate is not always pretty and it is not straightforward. It feels slow. Sometimes it can seem like an impossible juggling act when the demands at home are so intense and those moments away from my children feel like I am failing them.

But when my little one proudly tucked into his school bag so he could show his friends and teachers a positively framed news article titled “Calling All Superheroes” that highlighted “support for those with a brain condition” – I knew, I KNEW this journey is worthwhile.  We will get there, even if it feels at times like a snail’s pace. This next generation is strong and with our help they will be better equipped than those who have gone before them. They have FASD role models paving the way. We all are standing on the shoulders of giants. We are not fighting the same old battles. We are moving this into a whole new playing field.

And my son who sees more than I do reminded me this week that even a snail’s pace can be a fascinating journey.

I suspect that once we break out of our comfort zones further – bringing with us to static rooms our messy lives and our powerful truths – change can come faster and with more innovation than we can imagine now.

And as we who live it all all know, where ever we FASD families go the trails we leave sparkle and glitter. 🤣

For anyone who doubts that, I have proof. In this one snail- and slime-loving house – I have yet to scrape the remaining glitter slime off our dining room table…and the snails are out there again on this wet morning. Yes, this weekend’s task is to tidy up around here after a busy week of being both seen and heard…reality calls…

 

 

 

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