Be Angry, But Not at Those with FASD

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By SB_FASD

This is for the parents, carers, guardians, extended families and friends out there who are faced with some very long days as they struggle to support a loved one with a neurodevelopmental disability. It’s for those who bear the brunt of the very hardest realities of the way that underlying atypical brain-wiring in a child can affect daily life. Specifically, this is for those who love and care for people with Foetal Alcohol Spectrum Disorders. In the UK as many as 6% or more may be on this spectrum and yet there is simply not (yet) awareness and support for those who are coping day by day with the social, emotional, sensory, cognitive and physical challenges that can come with this condition.

So very many families are in distress, misunderstood, sometimes judged unfairly, struggling in towns and cities for some sort of joy in a life that can be consuming with so many ups and downs and dangers and uncertainties, especially if the right diagnoses and support aren’t in place.

There are limits to what parents and carers under intense pressure can endure. We are human. Helplines and support groups are full of pleas for help. Collectively, our families and homes are under siege. While there are signs things may be changing at a high policy level, on the ground there still is no visible way forward for far too many. The pain and the heartache in this community are palpable. It run deeps. I get it. I do. I have felt it. I have lived it.

But then I see something that bubbles up time and again and it really sucks the wind out of me. I see parents and carers directing this absolutely understandable angst back at their children. I see the cliff edge where compassion stops. Parents and carers react when their own fight/flight instincts kick in. Sometimes it goes to unhealthy places. In recent days I have seen parents call their children horrific terms I won’t repeat here. I cringe knowing that adults with FASD will have seen those comments too.

I weep inside because those young people in those families will be absorbing all that negativity. It will make it harder for them to self-regulate. It will make it harder for them to learn coping strategies. It will in fact deepen the very behaviours that are fuelling frustrations, behaviours that are due to the underlying hidden disability, not because the person with FASD is being deliberately naughty. As the young person ages and enters adulthood the issues compound and sometimes the gap can widen at home.

So I say to a parent or carer who is at wit’s end, if you’re going to be angry…

…be angry at a system that refuses to see the organic brain damage caused by exposure to alcohol in pregnancy. Be angry that in most places in the UK it’s nearly impossible or can take years to get diagnosed and assessed for a Foetal Alcohol Spectrum Disorder. Be angry at professionals who ignore, belittle or patronise you for fighting for your child’s needs. For professionals who deny this spectrum exists. For practitioners who in their arrogance insist on using therapies and behavioural approaches that do not work and can cause harm to someone with the cognitive processing issues of FASD. Be angry at national, regional and local policy makers who refuse to fund and support people with disabilities and who do not even have FASD on their radar because those definitions of disabilities too often exclude people with FASD. Be angry if someone knows a child was exposed to alcohol in the womb and doesn’t bring that information forward. Be angry when this is minimised to avoid paying for support and services. Be angry when people deny the risks of drinking alcohol in pregnancy and try to confuse public messaging on this. Be angry because an adult with FASD is turned away from benefits. Be angry because a request for an Education, Health and Care Plan assessment is denied. Be angry because a student with FASD was excluded or off-rolled rather than the school trying to support their special educational needs. Be angry at the pub culture in this society and the pressures on pregnant women who are too often confused by inconsistent or conflicting information and who might drink for many reasons, but not to harm a developing child. Be angry when a birth mother is denied the help she is seeking. Or when stigma suffocates progress. Be angry when another young person with FASD ends up on the streets or in prison or dies too young.

Yes, be angry. I get it. I really do. Be so angry you force the system to change. Use that anger to fight for diagnosis, services, benefits, a place at the table.

But…please, please don’t be angry at the person with FASD who is in your life. Don’t be angry at a kid who can’t do what you asked. Who is still not dressed and ready to go. Who threw something. Hard. And maybe even broke it. Don’t be angry if you didn’t get a birthday card. Or if that special treat was eaten. If you were ignored yet again. If the wall was drawn on or the paint spilled. Don’t be angry if you can’t go to a family birthday or if you have been sleepless for too long. Or if you just got hit by fists or maybe words that might even hurt more. If pants were soiled. If new shoes destroyed. If your holiday dreams didn’t pan out because someone got overwhelmed in a new place. If you spend sleepless hours each night because a child can’t settle. If you yet again bear the brunt of yet another impossible day at school. If your teen or adult lacks the ability to handle situations you think they should. Don’t reduce all of that down to anger.

Learn the nuances of those feelings. Train yourself to control those surges. (That is after all what you are asking your child to do. If you can’t, how will they? Where will they learn to do this?)

There’s a whole dictionary of words that can better explain your emotions. You may be frustrated or exhausted or discouraged or afraid. You may be disillusioned or uncertain or overwhelmed or triggered. You might be fearing a never-ending repetition of moments such as these. Looking into that future can grip your guts and bring you to your knees. For all of the reasons above and more you have a right to be angry – but not at that vulnerable person who depends on you. It’s not them against you. You are on the same side. The battle is you together against the system that must yield, that will yield.  You have to form an unbreakable alliance, even if your loved one isn’t always able to hold up their side of that due to whatever additional traumas and attachment issues they may have, even if addictions and secondary mental health challenges make this hard. Your commitment must be so strong that even in the midst of all that can happen, your loved one knows you are present and un-losable, even when you are a tired and worn out and agitated and upset. Even if outside help, involvement of authorities or alternative living arrangements are needed. Especially then.

Because they will know deep inside that love is solid. They won’t internalise that you are angry at them. They will come to know you are instead angry at a system that doesn’t bend for their needs, doesn’t see how hard they try, puts up walls where there should be pathways and steps to help them get to where they have a right to go. And by helping them understand the nuances of your own feelings and by showing them that you understand some of their most confusing actions are due to how their brain works, you will be helping them gain emotional literacy. By redirecting and renaming that ‘anger,’ you will be opening doors for your child’s future rather than forcing them further into themselves. These early lessons will either teach them that adults are always mad at them and there is no way to explain their needs to ‘power’, fuelling a negative spiral, or they will learn that they can trust and engage with authority figures, even when the words and connections are at first hard to find.

They will gain experience needed to become self-advocates.

There are known strategies that can help individuals with FASD learn and grow using their many strengths. People with FASD can and do have positive lives. They can and do acquire individualised coping mechanisms and strategies. They can and do contribute to society in many ways … if they get the right start and support. Just knowing and understanding they have FASD can improve their chances. A stable living environment is also among the most important protective factors as is positive self-esteem.

So, please, please don’t be angry at your children. Be angry at the system but love and celebrate your kids in all their complexity.

If you don’t, who will?

Every child deserves unconditional love. Every. Single. Child. And a person born with a lifelong and incurable neurodevelopmental disability surely has a right to compassion in their own home. Every. Single. Day. Every moment. Throughout their lives. Even when it’s difficult. They need you.

It’s not easy, but you can do this. Just start somewhere. Find a positive and hold onto it. No one is perfect. Don’t beat yourself up over wobbles. We all have them.

Just remember – kids with FASD are trying. And how you read that matters.

 


P.S. – You are not alone.

Help is available via online and local support groups. Google for help near you. Some links are available here. Many areas if they do not have FASD-specific groups have support for those with disabilities and their families. Reach out. Call your GP if you believe you might be depressed or in need of help for yourself.

In the UK, the FASD UK Facebook Support Group involves more than 2,200 families.

This Parent-Advocate Celebrates Messy Trails and Snails

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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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