The intensely vulnerable children hidden in ‘normal’

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In my last article, I talked about the extreme vulnerability of children with sensory difficulties whose needs are hidden because they “look normal”. I am taking a slight detour from the sensory world here (although it will certainly be involved, just try to keep me away from it!) to consider another group of children at even greater risk. Not only are these children’s needs generally not visible to the naked eye but they are also not being recognised by professionals and there is almost no support out there for them.

Presumably these children have some incredibly rare condition, that’s why we haven’t heard of them and that’s why there is so little support available? Because if the condition were common, well of course we would have heard and we would know where to turn to. Sadly not. The condition is foetal alcohol spectrum disorder (FASD) and to give you a comparison to gauge how common it is: autism is currently thought to rate at approx. 1% of live births, whereas foetal alcohol spectrum disorder is estimated to run at between 2-5% of live births.

If it is so common then it cannot be that serious, you may think, because if it was serious we would notice it. Sadly, this is another no! A baby with foetal alcohol spectrum disorder might be considered to be a grizzly child, a toddler with the disorder may be described as difficult. By the time the child has reached primary school, they may have been misdiagnosed with another neurodiverse condition such as ADHD as there is an overlap in symptoms. This can be dangerous, as some of the drugs prescribed for children with ADHD can be damaging or ineffective for children with FASD and different strategies are needed for their support.

In early life, many children with FASD would present with symptoms that we would consider within normal bounds for their age group. However, the outcomes for the condition long term are very depressing, the difference between them and their peers increases through life like the vulnerable children I mentioned in my previous blog. They are likely to pick up a whole host of secondary mental health problems as a result of their primary disability and these worsen with age. To really bring the point home, people with FASD have high rates of mortality in their 30s and 40s when their ability to cope with the mounting challenges they face gives way. Suicide and death by overdose are common.

In the early years, we are best placed to make long-lasting differences. A small change in early life can equate to a massive change down the track. As I write I am travelling on a train (something I do a lot) so my thought is to tracks, a track that begins at a degree’s difference to another track 100 miles down the line is in a totally different place to the first track, even though at the start they appeared to be pretty much the same. By understanding the primary disabilities associated with FASD and providing for the needs arising from these, you can change the course of their lives. It sounds dramatic but it is true. You do this for children every day. You have extraordinary jobs!

FASD comes about through the exposure of an unborn child to alcohol or other substances (it is possible that other causes of chemical change – for example, a mother who experiences stress or trauma during pregnancy – could cause overlapping neurological changes, but that’s another topic!). Exposure to substances during foetal development causes neurological differences in the brain. Be clear this is a physical disability. But it is a physical disability in the brain, so we cannot see it. The precise nature of the differences is influenced by when in pregnancy the foetus was exposed and to what extent and for how long the exposure lasted, this is why it is a spectrum disorder. To learn more about what these differences are you can read another article by me here, or use Google to find support groups near you. Here are some to get you started:

www.fasdtrust.co.uk

www.nofas-uk.org

http://www.fasdnetwork.org/

I want to bust one more myth and another misconception before I go, just in case you encounter them!

The misconception is that children with foetal alcohol spectrum disorder have a distinctive set of facial features in the way that a child with Down’s syndrome will. This is not the case. Less than 10% of children with FASD have the facial features commonly associated with the condition and these children are not those most affected by the condition; the features simply come about as a result of a genetic quirk that some children have and some do not.

And the myth?

The myth is that it is becoming less common, or that it is not a problem in this area.

Foetal alcohol spectrum disorders are on the rise in the UK and are increasing in prevalence across all sections of society. This is down to the changing nature of our social lives – it is the glass of wine after dinner, the legal highs of one section of society as much as it is the binge drinking and drug taking of another. In some areas, an understanding of abstinence during pregnancy is well established, but many people lead lives where exposure will have already happened during the vulnerable first weeks of a pregnancy before the woman knew she was pregnant.

In other areas, alarming advice such as the taking of alcohol to ensure a baby with a smaller head and therefore an easier birth is still handed out. However it happens, we need to concern ourselves with what we do to help. We also need to be aware that the stigma around this condition is one of the greatest barriers these children have to understanding and support, so we must make sure to demonstrate our understanding rather than our judgement.

If you are interested in providing sensory support for young children with the condition, check out this set of FREE activities in the third set of guides on my website here. Many of these target deficits experienced in the brains of children with FASD. The wonderful thing about the brain is its neuroplasticity, by giving them a boost in areas they may struggle in later we may help to tip the balance in their favour.

About the author

Joanna Grace is an international Sensory Engagement and Inclusion Specialist, Trainer, Author, TEDx speaker and Founder of The Sensory Projects.

Consistently rated as Outstanding by Ofsted, Joanna has taught in mainstream and special school settings, connecting with pupils of all ages and abilities. To inform her work, Joanna draws on her own experience from her private and professional life as well as taking in all the information she can from the research archives. Joanna’s private life includes family members with disabilities and diverse conditions and time spent as a registered foster carer for children with profound disabilities. 

Joanna’s books Sensory Stories for children and teens and Sensory-being for Sensory Beings sell globally. She has a further five books due for publication within the next two years, including four children’s books. 

Joanna is a big fan of social media and is always happy to connect with people via FacebookTwitter and Linkedin

 

 

 

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