FASD (Foetal Alcohol Spectrum Disorder)

I realise that this issue will not affect every adopter but it is a disability that is very close to my own heart.

September 9th is recognised as international FASD day and the date was chosen to represent the 9 months that a baby is developing in the womb. According to the National Organisation for FASD it is a hidden disability that could be affecting as many as 4 to 6 million people in the UK. The IAS have suggested that the UK rate is one of the highest in the world at 61.3 per 10,000 births.

So, what is FASD?

FASD or Foetal Alcohol Spectrum Disorder occurs when alcohol exposure affects the developing brain and body of a baby in the womb. As the condition is recognised on a spectrum, each child can be affected differently. It is now also accepted that more than 400 other conditions can occur alongside FASD which is a lifelong neurodevelopmental condition.

One of the best guides I have found for easily explaining a very complex diagnosis can be found on the following link.

https://www.sign.ac.uk/patient-and-public-involvement/patient-publications/fetal-alcohol-spectrum-disorder-fasd/

How does it affect our child?

Well as already mentioned, it is on a spectrum and getting a full diagnosis is very difficult unless you have very clear cut evidence that a birth mother drank during the pregnancy. That unfortunately is not that clear cut with Sproglet so we have only been able to secure a diagnosis that confirms learning difficulties as a likely exposure to drugs and alcohol during pregnancy. This does somewhat limit the support we are able to get for him in school but we are pursuing a fuller assessment and other enquiries that may be able to support him better.

As to how it affects our child on a daily basis…

  1. We struggle with poor memory which means we can’t always rely on him to give us accurate information if he needs to relay a message to us from school. It also means that on Monday he will be able to tie his shoelaces but on Wednesday it is like the knowledge and memory of how to do that has fallen out of his brain and he cannot complete the same task. While I don’t wish to demean other serious medical conditions, I have heard FASD likened to Alzheimers but without the continuing deterioration. This can make it very frustrating as a parent when you think your child has learned a skill only to find that a week later you need to re-teach the process all over again or wait for the memory to return.
  2. We also struggle with an inability to understand cause and effect, which makes discipline, boundaries and consequences very challenging. You can clearly explain to your child that they need to adapt or modify their behaviour or stop doing something or it will result in them losing access to their Ipad or some other treat, but they are not able to link the 2 things together. When they then lose their Ipad they are not able to understand what that had to do with the thing they were asked to stop doing 5 minutes ago. That means that a lot of traditional parenting methods do not work effectively. I would love to say we have found all the most effective ways to handle this but the resources, tips and tools are in fairly short supply so when we’ve identified all the skills we need, we’ll write a book to help other parents.
  3. Learning at school is very challenging for us particularly in the area of maths as following through processes is very hard for his brain to do. This means that even the simple processes for division, addition and subtraction are difficult. This is very common and we have found that lots of repetition and looking for more creative ways to do learn division using bowls and your own body weight in smarties can be effective (albeit that you will then need to embark on a weight loss programme once you eat all the smarties after successfully completing the division homework.)
  4. Our overall behaviour can also be challenging as meltdowns happen after exposure to anxiety inducing activities or frustration that doesn’t get regulated quickly enough. Due to a struggle regulating emotional behaviour we have experienced both violent and aggresive behaviour. I do believe that we are fortunate as these are not daily or even weekly occurences but they are scary and damaging when they happen.

So, is there hope?

I would have to shout a resounding YES!

FASD and the associated conditions will be a lifelong challenge for any child and their family affected by it, diagnosed or not. However, as much as there are many challenges to be met head on, we do see some of the strengths that our child displays on a regular basis.

He may be slightly slower at achieving appropriate levels of independence, but we have taught him how to cross a road safely, with encouragement he is getting himself ready for school of a morning using a prepared checklist that he just has to follow, he has developed social skills which means he does have a group of friends at school. His poor memory does mean that he doesn’t hold anger, angst or judgement for very long as he is capable of rebounding and moving on (sometimes at such a rapid rate, that we are still recovering ourselves). When he is well regulated emotionally, he really is the most loving, caring and fun boy to be around. His sense of humour is something that most people comment on.

Our other blessing is that now he is a little bit older and more able to understand most of his adoption story, he realises that this is not his fault and that he will always need to work harder than most of his peers while still not always achieving the same level of success as them. We also believe that he will be able to live fairly independently although may need some continuing help with money related issues. There are also certain occupations that he is already interested in that we believe are well within his capabilities.

We don’t know what his future holds, but we do know that he can dream big and with the right support and cheer leaders it will be a great one.

Where can I look for more information?

If you or anyone you know are affected as a result of alcohol being used during pregnancy, there is help and information available.

My favourite ‘go to’ websites at the moment are

If reading is more your thing, then I definitely recommend the following 2 books

  • Understanding Fetal Alcohol Spectrum Disorder by Maria Catterick and Liam Curran
  • Foetal Alcohol Spectrum Disorder: Parenting a child with an invisible disability by Julia Brown and Dr Mary Mather.

I can only hope that this is helpful to some but if you are at the start of your journey of discovery or want to offer me any tips on those behaviour challenges, please feel free to drop a comment below or send me an email via the contact page.

As for me, I will today be wearing red which is the colour to represent FASD awareness and celebrating my very special boy!

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