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.

FASD – Not All News is Good News: Speculation about the Florida Shooter is Divisive

Blog_NewsBy SB_FASD

Far from the media spotlight, in Facebook groups and living rooms around the world, people with Foetal Alcohol Spectrum Disorders and those who support them are debating a news report that speculated as to whether or not the Florida shooter might have undiagnosed FASD. A major news outlet used this raw moment to highlight the too-often overlooked effects of prenatal exposure to alcohol. Better understanding FASD is an important topic. Earlier this month a US study showed that more people have brain-based disabilities due to FASD than have autism. Days ago an Australian study showed that people with FASD are a disproportionate segment of the prison population.

But I have never subscribed to the idea that ‘all media is good media.’ Some articles play straight into the anti-disability prejudice and stigma that exists. Our colleagues in the autism community know this well and are feeling this backlash once again, since reports are also circulating that the shooter had an autism diagnosis. Linking any condition with violent acts in this way ignores society’s failures which are by far the more salient issue in such cases. It’s easier to identify the ‘other’ – someone not like us – as being ‘flawed’ and therefore prone to such heinous acts. Whatever condition this shooter may or may not have had is not the reason why he did what he did.

An adult with FASD summed up why it is harmful to link a condition so quickly to such an emotive news event: “I don’t want this to be the general public’s mental association to FASD. ‘Oh, you have FASD? Uh-wait; isn’t that what they said that school shooter in Florida had?’ YES because from now on NOT ONLY will I be seen as ‘stupid’ or ‘retarded’ now I get to be seen as having the potential to kill and EVERYTIME I get upset about ANYTHING I will be under heavy scrutiny because ‘They said this this and this about FASD.’  I don’t understand HOW this is REMOTELY a good thing! It makes me afraid to be open about it because I don’t want to frighten people; what people fear-they destroy.”

Myles Himmelreich wrote, “This is leading to a misunderstanding, judgement and incorrect information about FASD. I am a motivational speaker, FASD consultant and FASD trainer and as such I shake my head and say ‘we still have work ahead of us’ this shows a blanket statement and will continue to misguide people to believe individuals with FASD will automatically be violent, NOT TRUE. Oh and I’m also an individual with FASD and as such I say ‘please see me, know me, support me and join me in truly understand the struggles but also the success I face every day.’”

All around the world people with FASD live lives of courage and accomplish amazing things. There are many examples of FASD role models. Sadly, the media rarely takes the time to acknowledge the good work they and others like them are doing. Instead it wakes up when it can sensationalise a story. This comes at great cost.

The US National Organisation on Fetal Alcohol Syndrome issued a statement that said in part: “We see no good reason for FASD to be discussed at all in the context of this shooting. There is no evidence of any connection between FASD and violent behavior. In fact, individuals living with FASD are disproportionally likely to be victims of violent crime, not perpetrators.”

The Minnesota Organisation on Fetal Alcohol Syndrome also responded: “Many people with an FASD and their families find it upsetting, stigmatizing, and dehumanizing to read media stories linking FASD and violence. It’s worth noting that countries with similar, and even higher rates, of FASD do not have the same issues with mass shootings that we have in the United States. This strongly suggests FASD is not the issue.”
People with FASD can have more than 400 related conditions due to damage done to developing systems while in utero and secondary issues can kick in if their primary needs are unmet. It’s a complicated mix. While FASD does not equal violence, we also should not ignore the fact that some with FASD need help with channelling aggressive and impulsive behaviours that can sometimes become quite consuming.

Savanna Pietrantonio, an adult with FASD who co-chairs one of the longest-serving support groups in Canada and who helps run an international FASD online support group Flying With Broken Wings, thinks it’s important that we use this moment for developing a deeper understanding of FASD and the powerful impact that proper supports can have on someone’s life. She said, “We’ve been the less and the least and the left out for too long. It’s too bad not everyone and even most people don’t have the all the information from which to make this event into a meaningful conversation. We can overcome and cope with the trauma involved with having brain damage due to FASD when we have support. It makes all the difference with acceptance and unconditional love and someone who isn’t afraid of our brain or mistakes!”

She and others in Ontario are pushing Bill 191 to amend the Education Act to “promote awareness and understanding” of FASD and “best practices” to meet their needs to reinforce the tremendous responsibility schools have to provide awareness, understanding and support to meet these needs, rather than punishing, suspending or excluding troubled students. As Mark Courtepatte, co-chair of the Hamilton support group said, “For people with neurological disabilities, their actions are communication. Whatever his condition may be, the Florida shooter’s actions communicated that he was overwhelmed, his brain was not able to comprehend or deal with his environment of continuous non-support and not being understood. He ‘snapped.’” He noted that discussion about the culpability of Cruz’s school is missing from the media.

Raewyn Mutch, one of the researchers from the Australian study, is quoted as saying, “The longer you leave someone unrecognised with a neurocognitive impairment, the more frequently they experience negative repercussions from not having their impairment recognised…They experience more often punitive responses to their behaviours rather than reflective responses based on the fact that you understand they have a cognitive brain impairment.” In other words, it matters greatly that we recognise and address the needs of people with FASD.

FASD is as prevalent here in the UK as it is in other countries, if not more so due to having one of the highest rates of drinking alcohol during pregnancy. We have seen recent UK reports about many adoptive families experiencing child-on-parent violence. These stats may include undiagnosed cases of FASD. (In the aforementioned US study only 2 of the 222 cases of FASD found were previously diagnosed.)

The good news is research shows that using known strategies to support those with FASD can create brighter futures. This positive approach is the basis of the FASD UK Alliance which runs an online support group for more than 1,600 families. NOFAS-UK promotes FASD Wellbeing by working with those with FASD, families, policy makers and practitioners.

The bad news is there are parts of the UK where it is not possible to get a diagnosis for those on the FASD spectrum, where people are denied support by the NHS and schools despite the fact they have brain damage. If the person doesn’t have the dignity of a diagnosis, that all-important insight into the ‘why-s’ of their struggles, tools and strategies are not put in place: the support, the assessments, the Education and Health Care Plans they deserve, the benefits that are increasingly denied to those who need them most.

Here in the UK adults with FASD are seeking to create change. As Lee Harvey-Heath, Chair of the FASD Advisory Committee said on the launch of the committee last year, “It is vital that those affected by FASD have a voice. Individuals with FASD need to be heard in order to gain the support that they so desperately need and deserve.  My own undiagnosed FASD took me to a place that many neurotypical adults don’t come back from. That is what I want to prevent happening to anyone else affected by prenatal exposure to alcohol.”

How to prevent this from happening is the task for us all. It takes political will, prioritising a vulnerable and too-often overlooked segment of our society, and compassion not sensationalism. We must not stigmatise the very same people we are trying to help. We have to hear their voices too. We have to seek change together.

This is personal. I am American, though I have lived in the UK for nearly 12 years. I am mum to a teen with FASD. The reason why I would not move back to the USA has nothing to do with the fact that there are people there with FASD, just as I would not leave England because there are people here who have FASD. I would not move our family back to the USA because of the guns, the increasingly militarised and polarised society, the failing health system, the lack of safety nets for the vulnerable, the fact the sitting US president openly mocked disabled people. I most certainly do not fear people with FASD, nor should you. Fear – if you must – prejudice, stigma, and inaction. Those are the killers. Fear another generation bearing the weight of this hidden epidemic because our political leaders didn’t think we cared enough to make it a priority.