Fostering Blog – hidden disabilities

3 April 2018

As children grow older and want to explore their independence, as well as the world around them, fostering a young person with a disability can cause unique challenges and questions.

Ultimately as parents or carers of children and young people, we want to keep them safe above all else as well as help them grow into self-sufficient, happy, and responsible adults.

Fostering a young person with a disability is no different but I have found it can pose different challenges especially if the disability is a ‘hidden’ one such as Autism (also called ASD – Autism Spectrum Disorder) , FASD (Foetal Alcohol Spectrum Disorder) or intellectual disabilities amongst others.

If you foster an obviously disabled child such as one like Anthony (see my previous blog), who is obviously profoundly disabled and in a wheelchair, strangers can be kind and understanding if he gets upsets and shouts loudly in public. Some people look away whilst others smile kindly. However, rarely do you get disapproving looks or tuts if he screams and throws himself around.

Now imagine a scenario where your disabled child (who looks non-disabled) throws herself on the floor, screaming or lashing out.

She looks like an average 15-year-old but she has an intellectual disability and brain damage so functions at the age of 5. She doesn’t understand why she can’t let go of your hand and run across the road to pet the dog on the other side, but the people around you don’t know this and start judging you and the young person.

It starts with a few over-long glances, a tut or two, followed by under the breath comments.  Occasionally a member of the public will confront you and tell you what a bad parent you are and that you ought to control your child.

A few years ago, we did respite fostering for a young person for a short time while her regular foster carers had the holiday of a lifetime.

It was prearranged, and I met Ezmie and her carer for a coffee and chat the week before. Ezmie was nearly 15 (taller than me!), pretty with long brown hair. She wore jeans with fashionable trainers and a trendy t-shirt. Her brain damage wasn’t obvious, nor the consequences of it which caused her to have global developmental delays, no social boundaries or fear of strangers, or the ability to think something through before she spoke. She also had problems regulating her emotions such as frustration or anger.

Ezmie’s carer stressed that she loved to be outside, particularly shopping centres and enjoyed the cinema and music which helped to calm her. She was with us for nearly a month and it remains one of my most rewarding and positive fostering experiences but also one of my most challenging at times.

We had a lot of fun; I had no other children with me at the time and we were able to go out and do activities without any time constraints as it was the school summer holidays. Although I drive, we took the bus almost everywhere as Ezmie loved to sit on the top deck and watch the world go by, chatting about what she saw.

She would like to hold my hand when walking and would often skip along beside me. To an uninformed observer it may look a little odd to see a tall teenager holding hands with an adult and we did get the occasional peculiar look which I ignored. Ezmie was generally oblivious to the looks she gathered which is a blessing as I discovered quickly people can be very blunt and, on occasion, rude.

I had a woman ask me what’s wrong with her (as Ezmie stood beside me) in the supermarket to which I replied nothing and stared at her until embarrassment got the better of her.

My biggest challenge with Ezmie was her hormones. She may have been very childlike but she had the body and hormones of an average teenager and this was hard for her, and difficult for me to manage. During that summer, I took her bowling which she loved to do. On the bowling lane next to us were some older teenage boys that Ezmie took an immediate shine to.

She tried to talk to them, smiling and giggling, and they socially blanked her. So, she tried harder.

I tried to distract her but it didn’t work and it was heartbreaking to watch. I intervened quickly when one of the boys started ridiculing her and eventually they were asked to leave by management, but she noticed the looks and understood they were laughing at her and not with her.

Time has passed and I’m aware of a change in the general attitude to all disabilities, but particularly invisible disabilities.

There have been a number of strong campaigns in the media by mental health charities, supported by celebrities and royalty which have significantly improved awareness and understanding as well as the public’s response to those with invisible disabilities.

We now live in times when it’s ok to admit you need support with depression, bipolar disorder, or other mental health problems, and I’m encouraged by the change in our society’s view of mental health problems and disabilities.

I think about Ezmie regularly and love having Anthony with us once a month. Baby S is no longer a baby and is toddling around. I wonder if, when she starts to display some of the characteristics of FASD which she was recently diagnosed with, the general public will be more aware, less judgemental, and more supportive.

I believe they will be.

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