A recent report by Adoption Scotland found that more than one in three adopted children in Scotland are either diagnosed with or suspected to have fetal alcohol spectrum disorder (FASD). Now two mums from the Tayside area, whose adopted children both have the condition, have shared their stories.
Marina Campbell, 54, has fostered Dionne since she was 10. Now aged 18, the teen was first diagnosed with FASD, which occurs in a person whose mother drank alcohol during pregnancy, when she was five years old.
Dionne finds it very difficult to follow conversations if they are going too fast, Marina says, and has stock phrases that she can use to make it seem as if she is keeping up with the discussions – especially with her friends.
“It’s very stressful for her, it’s very hard work,” Marina, who lives in the Coupar Angus area, explains.
“She very much will do what’s suggested so she’s quite vulnerable. If a stranger spoke to her on the bus they would be her best friend, so she doesn’t get out alone.
“She finds it difficult to remember her tasks all the time, so there is a very tight daily routine of what she does. Simple tasks that she knows can, some days, be completely forgotten.”
Although Dionne is 18 years old, her mental age – some days – can be around four or five years old.
“She’s not great at reading,” Marina says.
“She will read a book while listening to the audio tape or she will watch a movie repeatedly.
“She is 18 but she will chill with CBeebies and that’s never going to change. This is who she will still be when she is in her 40s.”
Marina became her permanent foster carer two years ago and says that Dionne is currently attending a life skills course at college.
“That’s fantastic because it gives her the feeling of further education, it gives her life skills,” she explains.
“They have a flat where they teach them cookery, they talk about social skills, they talk about safety and that lasts three or four years.
“They will also identify if your child has any strengths and if they would manage something like a photography course in college.
“Dionne’s passion seems to be geared towards gardening, growing vegetables and things. Fingers crossed she will find something once her course is finished.”
Speaking about some of the challenges of her condition, Dionne said: “Some of my friends talk about things and I don’t understand what they are talking about. I just have to go with what they are saying.
“I did gardening in the high school and at the college. I like just being outside, learning and growing vegetables. I do the gardening at the house.”
Dionne also enjoys visiting the cinema with her friends.
Marina adds: “She makes a mean apple crumble. She’s also very competent at cutting the grass and all those kinds of things. It’s not just growing fruit and veg, it’s everything in the garden.”
Over the last year Marina has benefitted from support from the FASD Hub Scotland, launched by Adoption Scotland in June 2018 to support parents or carers of people who have been, or may have been, affected by prenatal alcohol exposure (PAE).
Marina says: “I joined them pretty quickly, the minute they kind of appeared and that was even just to be with parents who were going though similar things.”
Before the hub was established she says she had to do a lot of reading up about the condition herself and, since joining, has been able to connect with other adoptive parents in the same boat and share advice.
“The hub is going to make it so much easier for a lot of parents because I think there are a lot of adoptive parents out there that don’t know anything about FASD,” she said.
“It helps within the family as well. The group ran a learning course about FASD and I was able to take her brother to that so he could learn more about it in a group environment.”
The Adoption Barometer report states that 53% of people polled in Scotland felt that healthcare professionals lacked basic knowledge about FASD, even though the condition is thought to be more common than autism.
“It horrifies me how little is known about the condition,” says Marina.
“When I go to see a health professional with her I have to sit with my daughter and explain to that health professional what the difficulties are because they look at her and make an assumption of her capabilities.
“Sometimes they look at me like, ‘what are you doing in here, she’s 18?’ and I have to explain the difficulties and they could just read it in the file and they don’t.
“It really is an invisible condition and very well masked, certainly by my daughter. If you spoke to her socially you would have no idea.
“I’m hoping that the hub will just grow and grow because there are so many children out there with it. I hope that the numbers just keep dropping as people become aware of it, because it’s preventable.
Marina is also keen to stress the importance of teaching school children not to drink when they are pregnant or trying to get pregnant.
“It’s something that they are completely unaware of really, I know I was when I was their age,” she says. “I don’t think much has changed in school when it comes to alcohol and pregnancy.
“When you see how successful the Autism Awareness campaign has been, that needs to be where FASD is. Unlike autism, FASD is 100% preventable. Awareness from a young age is essential.
“Throughout school there is this kind of shame that goes with it you know? Because you are supposed to be protected by your mother.
“To have something like FASD, there shouldn’t be shame about it because I think so many woman drink at the beginning of a pregnancy not knowing they were pregnant. We should all be allowed to talk about it.
“I think that’s why Dionne wanted to be in the article – because she wants young folk to talk about it more.
“It took Dionne a long time to talk to her friends about it, and what her difficulty was, and when she did tell them she was crying, but once she had done it once she found it much easier to talk about.”
The Tele spoke to another mother from the Tayside area who wishes to keep herself and her adopted son’s identities anonymous. We will refer to her as Kelly and him as Kieran.
Kelly adopted Kieran when he was three years old. It wasn’t until shortly before his seventh birthday that Kieran was diagnosed with FASD, following a year of tests.
Kelly says that Kieran is “actually quite light on the spectrum” and “doesn’t have some of the big kick-off behaviour issues that some of the kids do”.
“There are other parents that I know of who have kids with FASD and they have huge meltdowns and things like that. He doesn’t – he goes the opposite way, he goes into himself.
“He has problems recalling words, not even difficult words, things like leg, things that even toddlers would know. He can’t recall that word fast enough.
“He’s got poor memory. Home schooling proved to me just how difficult that is for him as he could do something one day and the next day he has completely forgotten it.
“When he was little he had sensory issues. He ate his uniform, in effect, literally ate it from the collar downwards and the cuffs upwards. He becomes oversensitive to some things or he seeks sensory input by chewing.
“The year before we moved here, he literally ate his way through eight school jumpers in a year.”
Kelly says Kieran also made his way through four school t-shirts, a cap, and his school bag.
“He ate the straps on his school bags until they frayed off, he literally would just chew anything he could get in his mouth,” she explains.
Having previously lived in England, the family moved to the Dundee area a year ago, which Kelly said was partly due to the fact that Scotland is further ahead in its knowledge of the condition than down south.
Since moving, Kelly says that Kieran’s sensory issues have calmed down as he is not as anxious at school.
“One of the issues with his previous school, which this school manage fine with, is that he used to get told off because he wasn’t doing things he had been told to do.
“With him you have got to say his name first, so if the class says ‘go get your coats on’, he wouldn’t put his coat on because the teacher didn’t say ‘Kieran put your coat on’.
“So it’s very simple little changes like that that this school have made that his previous school wouldn’t and he would get wrong because he wasn’t doing as he was told so, therefore, he was seen and labelled as a naughty child when he is anything but.”
Kelly says she “battled for years” as she knew within six months of Kieran moving in that there was something more going on.
She says she was branded a “worried first time mother” despite the fact that she had been a stepmother to four boys who had lived with her previously.
“I think because it can look like a variety of other spectrums, you often find that a kid who eventually has an FASD diagnosis, will have other diagnoses first.”
The report by Adoption Scotland states that almost two thirds of families (63%) polled in Scotland had waited two years or longer for a diagnosis, something Kelly says does not surprise her.
She says: “I would say that is quite quick. He was six when I got annoyed enough and got all of the evidence together and went and confronted the paediatrician from the adoption agency.
“She referred him straight away. So I kind of bypassed the normal way because I was so annoyed at that point, because I had been saying for two years, and was told it was attachment difficulty, it was this, it was that, it was the other, I was like ‘nah it’s not it’s FASD – I can see it’.”
Kelly adds that children with FASD are good at masking their condition. She says he is very skilled at negotiating with adults and will avoid answering something by asking another question.
Before Kieran’s diagnosis Kelly read several books about the condition. However she recommends the book Foetal Alcohol Spectrum Disorder – Parenting a child with an invisible disability.
“That book makes the most sense about FASD and about the spectrums of it as opposed to the extremes of it,” she says.
“That’s absolutely brilliant and that will describe the spectrum as such. So you could have a child that is oversensitive in one aspect but seeks sensory input in another. I would say that’s almost like a dummies guide to FASD.”
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