Family Stories

Diary of a deaf mom and 10-year old with neurodevelopmental delay and sensory needs

Day 9 of #TheGreatBigLockdown #Coronavirus #FASD

Today was the third day in a row the 10-year old followed me constantly around the house. He wanted to know what I was doing even though he could see what I was doing. He wanted to know instantly if I shuffled my seating position on the sofa, where I was going.

If I left the room he followed asking me if I was going to the toilet, every single time.

I understand a decent amount why he’s acting super clingy and unsure, I understand in these strange unstructured times that his brain is losing sense of where he is in the present, that he’s regressing to repetitive actions hoping he’ll get an answer that makes sense to him, a lot of his questions don’t have an answer. He’s in a Catch 22 situation.

Because I understand this, I have adjusted my responses, my actions and my patience accordingly. I am his rock, his anchor, his trust that he will be ok.

But it is now day NINE……..

I shouted this morning.  

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Hear Our Voices: FASD Stakeholders Speak Out

A new report from the FASD UK Alliance – prepared by NOFAS-UK. Drawing on experiences of more than 50 individuals and families affected by FASD.

Hear Our Voices (PDF)

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Fetal Alcohol: a family story and a campaign

fasd-family-storySusan Fleisher, founder and former executive director of the National Organisation for Foetal Alcohol Syndrome is inspired by her daughter Addie (pictured). She writes:

When I adopted my adorable daughter, Addie, she was almost 3 years old.  I went to the trouble to find and meet her birth parents. I liked them and felt confident that I would like and grow to love their daughter.  Because Addie’s parents were alcoholics with no proper home or income they were not able to care for her. So they gave me their permission to adopt their special daughter.

It wasn’t until Addie was eleven that I found out the true reason for her confused behaviour and learning difficulties. At a conference for adoptive parents I learned that my wonderful daughter had the most widespread, under-diagnosed disability in the world.   I learned that because her birth mother drank alcohol in pregnancy Addie was born with alcohol related birth defects known as Foetal* Alcohol Syndrome (FAS). Continue reading

Lisa’s story

Birth mum, Lisa, drank heavily for the first five months of her pregnancy, because of difficulties in her life at the time. From the beginning, she realised her son, James, was ‘different’.

James was born underweight at 4lbs 11oz.  At school, James consistently underachieved in most areas, especially maths. It was noted that he couldn’t always apply his knowledge to problem solving. There were days when he was unable to do something he had previously learned. He was always losing and forgetting things and resolutely refused to do any homework. Mornings were a nightmare as he had no awareness of time and of the necessity to get washed and dressed for school.

As James got older, his behaviour became increasingly difficult to cope with and eventually, at the age of 14, James went into foster care. He returned home in his late teens and so began the search to find out what was causing James’ difficulties.

Following months of online research of symptoms similar to those that her son was showing, Lisa found out that the potential cause was alcohol consumption during pregnancy and that James was suffering from FAS. Lisa contacted her local GP and even though he was sympathetic he had no knowledge of FAS. Also James’ psychiatrist was adamant that James had a cannabis addiction problem and gave him a label of dissocial personality disorder.

It was only after agreeing to take part in a television documentary about Foetal Alcohol Syndrome that Lisa was put in touch with Dr Raja Mukherjee, the UK’s leading expert in the field and James got a formal diagnosis. It turned out that James had the facial features common with FAS and all the behaviours of FASD.

The majority of children with FASD are not with their birth families. They get adopted or fostered. GPs should record alcohol information in the family history. These records will help the child in school and services later in life.

Lucy’s Story

Casey and John adopted their daughter Lucy when she was four – she is now nine years old. They are devoted to their lively, adorable daughter but no matter what Casey and John did, Lucy’s behaviours became unpredictable and she was getting aggressive and angry and was hitting and hurting herself.

At school the teachers reported that Lucy couldn’t stay in her seat and sometimes hit her classmates without any apparent provocation.

Though she is very verbal, she struggles with maths and telling the time. At home Casey helps Lucy every day with her homework. Lucy would learn her lesson one day and the next day forget everything she was taught. Casey and John had tried many parenting strategies but nothing was working.

When the social worker who had arranged the adoption told them that Lucy’s records noted that her parents were alcoholics, John searched the internet and learned about Foetal Alcohol Spectrum Disorder (FASD) and Foetal Alcohol Syndrome (FAS).

Casey and John took Lucy to their GP, Dr Robbins. She suspected that Lucy may have been exposed to alcohol before birth. Though Dr Robbins did not have experience to diagnose FAS or any other associated disorders she knew that a geneticist could diagnose the facial and physical features of FAS. Dr Robbins wrote a referral to the genetics department of the local hospital requesting that Lucy be given an appointment to be examined for possible FAS.

The geneticists report confirmed that Lucy had the facial features of FAS and a small head circumference. Lucy has unique hand creases, as well as small fifth fingers and toes.

When Lucy got a confirmed FAS diagnosis Casey and John were relieved to know what the problem was but didn’t know what to do about it.

They learned why the parenting skills they had been taught seemed to go wrong. Classic ‘time out’ as punishment made Lucy cry or get angry because she could never remember why she was being punished. She could not connect the consequences with her action.

But now that they knew that FAS was the reason for Lucy’s behaviours at home and at school, they could learn and apply better strategies.

John and Casey shared the best strategies with everyone working with and caring for Lucy. They started an FASD Parent Support Group. They no longer felt alone with a unique problem. They met families who could share their experiences and strategies. With knowledge and support life improved for Lucy, her family and at school.

Asking the prenatal alcohol question led to life-changing positive strategies for Lucy and all who cared for her.