Challenged Hope

Grandmother raising Grandchildren with FASD in Hamilton Ontario Canada


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How to Converse with a Mentally Disabled Child

Recently, there was commercial aired on TV about useless comments people make to those who suffer with depression, such as – snap out of it; you need to get out more; it’s all in your mind; etc. The reason I like the ad is because it outlines the misunderstandings society has about people challenged with a mental illness. As I raise my mentally disabled grandchildren I often hear similar phrases aimed at them by well-meaning people and find them difficult to ignore. So I’ve put together a check-list for people who are uncertain as to how to converse with children with mental disorders or, at least, how to treat my grandchildren should you ever have the pleasure of meeting them.

  • Always make eye contact when you ask them how they are, and speak clearly, but not ultra-slowly. Smile while you count to five, if they haven’t responded within that time, feel free to turn to me for a response.
  • Don’t offer to shake their hands. They are mega-cautious around strangers which makes them fearful of non-familiar physical interaction.
  • Don’t ask too futuristic questions, like – what are your plans for the weekend? Chances are they can’t remember what day it is, so the word weekend is redundant to them. Keep all questions in the moment, like – How was school today? or, What is your teacher’s name?
  • Don’t be offended if they don’t want to talk about you. It’s not because they are disinterested in your likes and dislikes, but rather they are too shy to ask. Instead, relate to them what you like, such as – I love to read books. Do you like books too? But don’t ask them which ones, as they won’t remember titles.
  • Compliment them. To hear you like something about them puts them at ease, like – Wow, nice shoes! or, I like your haircut!
  • Don’t compare them to non-disabled kids, such as – My son loves Math and he’s very good at it. He won an award last year. I know it’s hard not to boast about what your children are doing, but saying it to a mentally disabled child who struggles with every subject at school is just downright insensitive.
  • If you ask them what they enjoy doing, remember to make suggestions as they find it difficult to think on their feet. Don’t ask – What are your interests? Instead, ask – Do you enjoy playing video games? Which kind?- sports? Mario? Can you ride a bike, swim, skateboard, etc? Do you like watching TV? 
  • Don’t overreact if they say something mildly inappropriate. My eldest granddaughter talks way too much about farts without realizing it makes people uncomfortable. If something unacceptable is said, a simple response like – Let’s not talk about that – accompanied by a smile and followed with a quick change of subject will usually put an end to it.
  • Don’t turn to me and begin talking, in front of my grandchildren, about other disabled people you know. For example, don’t say – I know another child who suffers with mental problems. My grandchildren are aware of their disabilities, but not to that extent, and would be offended by such a conversation.
  • Don’t be offended if they suddenly run off while you are talking to them. This is their way of telling you they are finding interaction too difficult. Just smile and call – Bye then!

“It is not our disability that is the problem, but rather it is the way our disabilities are viewed by others.”
…..Drexel Deal

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FASD: Foetal Alcohol Spectrum Disorder

Three of my mentally disabled grandchildren have a confirmed diagnosis of FASD (Foetal Alcohol Syndrome Disorder) a term used to describe the full range of permanent birth defects caused by prenatal exposure to alcohol, FAS being one of them, and knowing the habits of my daughter when she was a pregnant teen, I am sure all of my grandchildren suffer from FAS.

But how to deal with the problems and behaviours associated with this diagnosis?! One of the ways to help my grandchildren with the challenges they faced living with FAS was through a consistent daily routine. It soon became obvious to me that allowing my grandchildren to live each day identically afforded them the reassurance that YES they could cope with the obstacles life placed before them without becoming overanxious or withdrawn. And that YES they could enjoy their playtime with peers as long as they understood the routine and what was expected of them, and that their daily playtime would hold little change, (sorry, but children’s large birthday parties are a huge no-no for children with FAS. They feel out of control and out of their depth re their coping skills). I also discovered that all of my grandchildren needed a solid anchor, which for them was me. As long as I was in view and easily accessible their demeanor told me they at least believed they could cope with daily living.

And even today, many years later, despite the fact that I am usually not more than ten feet away from any one of them, they constantly “check” on my whereabouts with “Hi, Mom!” or “I love you, Mom!” whenever they change rooms, or walk downstairs from their bedrooms. This has become their strategy to confirm their anchor is still well-chained, and firmly fastened! (Giggle: I am blogging in the kitchen and my granddaughter just walked in from the living room and said “Hi, Mom!” even though she saw me just a few minutes before. Which validates I really do know what I’m talking about!) If you are a caregiver to a child with FAS, expect to be “peeked” at many times throughout the day. No, they are not spying on you, or trying to listen in on your telephone conversations, but are just comforting themselves with the fact that you are available should a problem arise that they feel they can’t handle. Without their anchor close by, they will be less likely to try to work things through themselves.

There are many books available on the subject of FASD, and if you feel your child might be suffering the challenges of FASD, call your doctor for an appointment and ask for a referral to a paediatrician who specializes in children’s developmental delays. Although FASD is not an actual diagnostic term, there are three diagnosis that fall under the umbrella of FASD: Foetal Alcohol Syndrome, Partial Foetal Alcohol Syndrome and Alcohol Related Neurodevelopment Disorder. To get a diagnosis under the FASD umbrella means your child could qualify for specialized support programmes and other positive community resources. Ask the paediatrician any questions you have, how to manage your child’s behaviour, and request to be directed to workshops and resources in your area.