Seeing What is Not Seen in the SEND Debate: FASD

Blog SENDMarch

By SB_FASD

On 30 May children and families took to the streets in cities across England to fight for more funding for special educational needs and disabilities (SEND). Petitions were delivered to centres of decision-making. Twitter lit up with the hashtag #SENDNationalCrisis.

In a powerful piece in The Sun, Chair of the Select Committee on Education in the House of Commons Rob Halfon, MP wrote that: “No fewer than 78 per cent of permanent exclusions are issued to those with special educational needs, with 4,000 special needs students being excluded every week.” In another piece it was stated that “According to the NEU teaching union, special needs provision in England has lost out on £1.2 billion since 2015.” It’s a crisis all right.

The reality behind these figures was laid bare in a tweet by @Dyspraxialife: “It’s easy to show compassion for a child who is struggling. They have innocence, purity, vulnerability and the cute-factor. I wonder how many homeless people who get walked past every single day were once struggling children. Instead of love, they now get spat at and demonized.” This isn’t about ‘others’ – it’s about the health of our communities, the kind of society we hope to be, the smart use of limited resources. It’s about political will and choices.

So why do I feel like the air has been knocked out of me?

I see what is not seen, the “pink elephant” in the room as some advocates have started to call it: FASD. Foetal Alcohol Spectrum Disorders.

The best study to date in the UK says more than 6% may be affected by FASD, organic brain damage resulting from exposure to alcohol in the womb. FASD has been called a ‘hidden epidemic’. Statistically it affects more people than autism.

As I scroll through videos from the marches, I hear clusters of diagnoses and symptoms that match a pattern not uncommon among those with FASD: ADHD, ASD, OCD, hypermobility, dyspraxia, etc. I hear parents discussing exclusions from schools due to meltdowns that schools cannot handle.

I fear there are many missing the vital insight needed to put in place appropriate supports for their loved one, a diagnosis of FASD. FASD is a full body diagnosis, more than 400 conditions co-occur. Alternative strategies are needed at home and in school. Kids with FASD are often punished and excluded for behaviours that result from cognitive processing and sensory issues that contribute to a lack of impulse control, an inability to consistently remember what has previously been understood or to link cause and effect. Transitions are hard. The dysmaturity involved means everyone around the young person needs to adapt expectations and change the environment to give that person their best chance to succeed. Without lifelong support, the statistics for people with FASD are truly grim. Homelessness is just one of the possible outcomes.

There is great stigma at play here, fueled by a devastating lack of understanding. To even raise FASD in many parent-advocate or professional forums can bring a barrage of negatives based on the old-school shaming-blaming ethos. But we can frame the discussions differently. As outlined by the late Pip Williams, founder of the UK and EU Birth Mothers Network-FASD, the reasons why women drink in pregnancy are complex. Many pregnancies are unplanned. Most women don’t have the information about the risks of alcohol in pregnancy. Very often pregnant women are not drinking alone. For those who need help quitting, support services are severely lacking.

To help confront this stigma, my husband, son and I marched yesterday carrying huge brightly coloured signs made by the wonderful young people in the E. Herts and Area FASD Club that simply said “FASD” on them, wearing hats that said, “Ask me about FASD.”

One person who did ask was a recently retired Special Educational Needs Coordinator who had worked in two different schools. She didn’t know what FASD was. As she thought more about it, she said she had one child once who had Foetal Alcohol Syndrome (this refers to the 1/10 of those on the FASD spectrum who have certain facial features). A career SENCO would have had many, many students with FASD under her charge. Her question shows the vital importance of increased training on FASD at the frontline of SEND services. People don’t know what they don’t know.

We lasted at the march as long as we could. But there are no pictures of our signs out there in the news reports. To be fair, we left early. Our son with FASD was overwhelmed by the sensory input – the shouting, the whistles, the heat, the stop and go. Cognitively he was overwhelmed, unfamiliar with the march route, his anxieties soared. We didn’t even make it to the centre of the town, but we peeled off from the others, called it a success and came home. That’s the reality of life in our family. And the very many other families who were unable to be out there yesterday.

The tragedy of this absence from the debate is what has knocked the wind out of me. We know that early diagnosis and appropriate support create happier families and brighter futures for those with FASD.

And yet, even on a day when the streets are full of those with special educational needs and disabilities, our kids are still not part of the picture.

But I won’t stay down for long. I know change is coming. In England next year there will be a new NICE Quality Standard on FASD. Soon the health care system will be held accountable to improvements in services for those with FASD. The educational field too will have to wake up to FASD.

There will be no lasting solution to this SEND crisis unless and until FASD is a part of the picture.

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

BLog KEEPCALMSUPPORT ALCOHOL-FREEPREGNANCY-2

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!

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