Hurdles and happiness...

Ali with Eva, Frankie and Jasmine (left to right)
My husband, Barry, and I have adopted three children with Foetal Alcohol Spectrum Disorder (FASD), all with the same diagnosis, all affected in different ways. They all have Attention Deficit Hyperactivity Disorder (ADHD), two are autistic, two poor sighted, two have heart conditions, one is developmentally delayed. One never ever sleeps or stops talking, one is very fragile, none of them understands danger, two have difficulty with short-term memory, two have defiant behaviour, all are small in size, one is at special school and one in a special Autistic Spectrum Disorders (ASD) unit at school. But the most common thing is that they are all lovely, gorgeous children who deserve to be loved and to live in a family like any child.

We adopted our first child, Jasmine, when she was five. She had suffered a traumatic early life and an adoption breakdown at the age of three, through no fault of hers. Her psychiatrist said that “consistency was as alien to Jasmine as walking was to a fish”. We were told that, once she settled into the right caring family, she would blossom. The behaviours she displayed were challenging and unusual, but due to her past, not a disability. In fact, Foetal Alcohol Syndrome (FAS) was ruled out as she had a ‘normal’ IQ, even though her birthmother was a heavy drinker.

Jasmine was a delightful, bubbly, happy child who also showed a ‘darker’, unpredictable side. She showed no fear and we lost her in shops as quick as a blink. Sitting still in class was difficult for her. She had not been able to learn due to her problems, even though she was a bright child. None of the behaviour techniques we tried worked: unlike the other children I had cared for (two birth children, adopted twin boys, and 34 fostered children), Jasmine didn’t respond to anything.

I realised after some time that there was a problem and I tried to get support. No one could help us so I researched her behaviours on the internet. I came across Foetal Alcohol Syndrome (FAS) and, amazingly, everything Jasmine did fitted exactly! Our GP knew nothing of FAS and we tried hard to find someone who could help us. A consultant paediatrician assessed her and a diagnosis of FAS was made – which shocked her placing authority.

A year after Jasmine joined us, her sister, Eva, was placed with us by another agency at the age of 13 months after a long re-assessment and going to panel. It was very clear to me that she had the same disability, but more severe. Her agency was adamant that there was nothing ‘wrong’ with her, even though her foster carers said that she was the most difficult baby they had ever cared for: she screamed 24/7, never slept and looked very much like a baby with Down’s syndrome. She had been removed at birth due to her birth mum’s heavy drinking.

As soon as Eva was placed with us she was diagnosed as having FAS. Her placing agency refused to believe she had a disability, even though she was a ‘textbook’ baby with FAS. We had to fight for her rights and support from her authority as they had so little insight into her needs.

Life with two young children with FAS was difficult. Everything the children needed from agencies required energy to get. We had to educate professionals on FAS before it was accepted that the children needed help. We found this as exhausting as caring for two such complex children. I quickly became ‘an expert’ on their needs and ways to make people understand their disability. I wrote articles on FAS and used my social work knowledge to gain justice for my own children.

Eva’s FAS was more severe than Jasmine’s: she had extensive physical difficulties, so much so that we were warned that these may be life-limiting. She was deaf, used Makaton, failed to thrive, didn’t sleep, was frustrated, delayed, had poor interaction with peers, chronic eczema and asthma, and required a strict diet. At one stage she was seeing 11 consultants! Skills required to parent her tested our devotion and exhaustion levels as she just didn’t understand or act like any other toddler I had come across.

The agency didn’t seem to understand what we were going through and questioned our parenting until we decided to complain – our complaint was upheld. The first two years were very difficult, spent trying to manage and to gain correct services. Both girls were statemented for their educational needs.

When Eva had been with us for less than a year and we felt like we were just coming through the ‘dark days’, we received a phone call from another agency asking if we would like to adopt the girls’ brother, Frankie, who was two months old. I actually laughed and said, “you’ve got to be joking!” We were assured that he didn’t have any disabilities – even though he had spent the first two weeks of his life in the special care baby unit having fits. After some time we realised that we could offer this little baby a good home with his sisters, and accept his unsure future because we now had the expertise to care for him. It was not an easy decision, but in the end we knew that we wanted him.

Jasmine, Frankie and Eva Being over 45 with three children with complex needs was a challenge, and still is. Frankie did have problems and he was also diagnosed as having FASD. He isn’t as severely affected as the girls, but his first two years involved hospital admissions, epileptic-type fits, partial sight, poor behaviour, lots of falling, lots of things... We tried to get help from his agency but they denied there being anything wrong with him. He has been diagnosed as having Alcohol-Related Neurodevelopmental Disorder (ARND)for almost a year and, to this day, we still have received no support whatsoever from the placing authority other than a very menial adoption allowance.

We both now care full time for our three children. Working would not be an option: every day we have a meeting or medical appointment for the children. Sleep deprivation is the hardest to overcome and we have now been assessed for respite care for the girls, although there are not enough carers who could cope with our children. Eva went for respite after her carers were trained for four months and it broke down after one night. We have become experts in caring for our children and others are not able to manage them separately, let alone the three together.

The reality is that we are older parents and in for along time of hard work, caring for three complex children who exacerbate each other’s behaviour. We are facing up to the fact that we should never have had them all together: their needs are so complex that each of them would ideally need all of our time and attention. We have painfully told the social services this, but they didn’t accept our honesty as constructive.

Our children have a disability which will live with them forever. We love them and will continue to advocate and care for them as long as we are able to do so. Nothing will get in the way of us standing up for their rights or getting the best for them and giving them the love that they deserve. It doesn’t get easier, it gets ‘different’. But despite the huge hurdles we climb every day, we love them and they are happy.

Ali McCormick

The children’s names have been changed to protect their confidentiality.

Ali has recently set up the eastern England branch of FASawareUK, an organisation which aims to raise awareness, give informed choice, provide information and support for people affected by or interested in FAS. Ali is keen to hear from families of children with FAS/FASD or who maybe wrongly diagnosed, in order to set up support groups for them. Contact Ali at fasawareukeast@btinternet.com

Originally published in the Be My Parent newspaper in January 2009.

This article is published with the kind permission of the people involved. You may download it for your own reference but if you wish to use it for any other purpose, please contact Be My Parent for authorisation: Be My Parent, BAAF, Saffron House, 6-10 Kirby Street, London EC1N 8TS. Telephone: 020 7421 2666/5/4.

Last updated: 08 January 09

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