New! Audio recording
Yesterday was the second anniversary of the local FASD support group we set up after our son’s diagnosis of a Foetal Alcohol Spectrum Disorder. We had several families new to the group join us.
We had nearly cancelled yesterday’s meeting. We have been stretched and pulled in too many directions lately, with the added pressures of our little one’s operation throwing an already strained house nearly over the edge. We both left the house yesterday without our wallets, I didn’t have my phone – an indication of the mayhem that can be our lives. And yet, two hours later we left the meeting uplifted, glad, invigorated. Being with others who ‘get it’ does that to you.
One mum new to the group said it had taken her a long time to decide if she wanted to come to a support group because she has never done something like this before. She reminded me of me … and the first meeting we attended in September 2015 – two months before we set up our own group.
I wrote then, “It is not easy to come forward and to say you or your family need help, that you can’t do it alone, that you need support. I have always failed those trust tests where you are supposed to fall back and let others catch you. I didn’t know what to expect. I didn’t want to hear more bad news… And yes, as I had dreaded, it was … a room that held some of my worst nightmares – those things you fear for your child when you lay awake, trying to suppress the panic. The vulnerability of our kids laid bare. Prison. Sexual violence. Isolation. Ostracism. Self harm. Rejection. And yet, there it was–the mind-blowing and inspiring resilience of people whose loved ones have suffered through those worst things of all. They were saying, ‘We’re still here, we’re still fighting, and look! Our kids are not only progressing, they are doing well.’ You can come through even great darkness to the other side. I never thought to face down those fears.”
I felt the power of the journey again yesterday as in our imperfect way, our group was bridging those who are in crisis, those whose children are recently diagnosed, and those who have been in crisis but whose lives have entered a calmer period. The polite go-round where everyone gave the most basic of facts about their families, followed by the raw versions as we delved deeper into discussion. Fears. Tears. Frustration. Anger. People who try so hard to do right by their little ones, but who can’t find the support, can’t find the professionals willing to help. The dismay at the lack of understanding of FASD and what this precious time being wasted means to our young ones and their families. It makes you so sick to hear story after story, to know these realities are multiplied by the thousands across the country. To know that there is proof of what can help but the professionals (not all) in their arrogance (some), in their lack of training (most), in their over-stretched and under-resourced structures in which they work (all), refuse to go that extra step. To know that even in places like our local area where there are professionals who want to do more and who have the training to do more, even then The System sometimes takes away their ability to act for short-sighted or ill-informed reasons. That System fails us – and leaves a lonely mum at wit’s end crying silently-strong, but at a loss for how to move forward when every single door gets slammed in her face, and as she sees her lovely child start to crack under the weight of the pressures being put upon him. It is quite simply heartbreaking. And so unfair.
Families across the UK say they wish they had a support. I wish they did too. This situation is outrageous, cruel and dehumanizing. The System certainly steps up fast enough when a young person goes off the rails. They find the resources to toss them in a high-cost prison, but refuse to provide funds to diagnose and help support those with brain damage/brain injury at the formative time in their lives. They cut services, benefits and then come down hard when someone can’t pay rent. The System waits until good people are at breaking point or until after something is broken irretrievably before thinking the situation is bad enough to trigger the services and support that are critical.
No one, NO ONE will EVER be able to justify that to me.
It simply must change. Our kids shouldn’t have to break before The System sees them.
That said, don’t wait. If you don’t have support, you can build it. You don’t need to be an expert. You don’t need to have the answers. You don’t need to be an experienced organizer. You just need a room, some people, and a belief that sharing this journey with others will help you all – a belief that ‘together we are stronger’. Here’s how we did it.*
Be patient with yourself. it can take time to wrap your head around it all. We went into a kind of depression after our son received his diagnosis in spring 2014. We didn’t really grasp the full impact of it. We received a huge 60-page report the following spring 2015. We first started by educating ourselves, and then a tight-knit group of family, friends, our son’s school. It was not until Autumn 2015 that we attended our first support group meeting organized by NOFAS-UK and a couple months later set up our local group.
Who knew then just how much this would change our lives?
At our meeting yesterday people said they were holding back, trying to be ‘polite.’
I humbly suggest, let’s stop being polite. Let’s stay positive. Let’s tell it like it is. Let’s make some noise. Call a local radio station, call a local paper.
Let’s make life uneasy for every bureaucrat who takes the file of a person with FASD and puts it on the ‘not for action until this one breaks too’ pile.
Let’s let love and bloody-mindedness drive us toward the future we know is possible, the future our loved ones deserve. The brighter future we insist upon because we have hope.
Yes, some days are hard. Very hard indeed. Yes, we can provide peer-to-peer support for each other. Yes, we can raise awareness. Yes, we can spread the information and strategies. But at the end of the day there are elected officials in this country responsible for the well-being of people with disabilities, responsible for young people in care and those who are adopted, responsible for ensuring that those with special needs are receiving the education to which they are entitled by law, responsible for the mental health and well-being of our young people and pregnant women, responsible for ensuring adequate diagnosis and medical care is provided to the most vulnerable in our society.
Sadly, it’s up to us to insist that all of these people Do. Their. Bloody. Jobs.
* For those in the UK, the FASD UK Alliance has online support and people like us who have set up groups in various ways across the UK who would be willing to help talk you through setting up local support. For those elsewhere there are networks all around the world. Google! Or send us a message and we will try to help you find a national or local group.
For an insightful overview of the brain-based issues and some strategies, please watch this video by Dr Cassie Jackson from a NOFAS-UK FASD Wellbeing Workshop. For materials for schools, please see the Teaching a Student With FASD handout, also from NOFAS-UK.