Tuesday 21 November, 2017

12 things you ought to know when dealing with parents of disabled kids

Laura Escayg and her husband Francis with their kids. Photo courtesy Rashmi Mathur, People of Trinidad and Tobago

Laura Escayg and her husband Francis with their kids. Photo courtesy Rashmi Mathur, People of Trinidad and Tobago

Being the parent of a child with disabilities is challenging and the last thing that parent needs is insensitivity from the general public. 

Rude comments, illogical assumptions and unsolicited advice is the last thing any parent of a disabled child wants to be faced with.

In a recent Facebook post, Laura Escayg, founder of A Very Special Disabilities Forum, said 99 percent of the time, most assumptions people make about other people and their situations, choices, children are either incorrect or misguided.

"Parents of children with disabilities deal with all sorts of assumptions based on one simple word, ignorance. When people do not ask questions first in order to gain insight into your child’s condition it can be both offensive and exhausting on many levels," she said.

Escayg is the parent of a son who has a rare gene disorder called Incontinentia Pigmenti which causes Global Developmental Delays. He is all round delayed in his development and has sensory issues.

In her case, she said, people often assume that her son, Isaiah, is Autistic when he is not. 

Escayg posted a list of things people should think about when interacting with a child with a disability or their parents for the first time.

With her permission, we are reposting the list here. 

1. It is always a good idea to ask the parents the nature of the child’s condition for e.g. “May I ask what condition your son/daughter has?”

2. Please ask the parents the child’s name and if it is ok to speak with the child before you proceed to interact directly with the child after you are aware of their condition.

3. Please speak to the child with the disability as you would speak with any other typical child. Children with intellectual disabilities are capable of understanding us clearly when we speak with them.

4. When you come into contact with a child or adult in a wheelchair who is cognitively typical but physically challenged please do not assume they are intellectually challenged. Speak with them directly and as you would speak with any other “typical child”.

5. Spare us the sharing of your knowledge about our child’s condition. Most of us will have already read up on our child’s condition and have a working knowledge and understanding of it, plus we tend to mostly trust only the opinions of ourselves, our doctors, therapists and other parents experiencing the same or similar experiences.

6. When we speak about how tired we are from our lack of sleep, ask if there is anything you can do to help instead of making silly suggestions or comments.

7. Stop, I repeat STOP telling people or asking us if our children are possessed by evil spirits. Our children have medical conditions and for various biological reasons, they function differently. If you tell us about possession we may throw some holy water on you to see if we can cast the ignorance out of your thoughts.

8. DO NOT ASSUME that our children who look typical and behave differently just “Need a hot slap!” Behavioral disorders, Autism, ADHD, Sensory Issues in our children, all triggered by chemical and other imbalances in the brain can cause behavioural challenges that the child cannot control on their own. Our children are sometimes very frustrated because they cannot verbalise their discomfort and so “meltdowns” not “tantrums” occur.

9. Stop staring and do not film our children, they are not animals in the wild and you are not in Africa on a Safari adventure. It is rude to stare, sure you can look but do not stare as if you have never seen another human being and please do not make the mistake of staring at our children with scorn unless you want a tongue lashing.

10. Your typical child, cannot, I repeat, cannot contract whatever condition our child has by interacting with them, sitting next to them, playing with them. If anything they are catching YOUR prejudice more than anything else. Every creed and race find an equal place extends to those with disabilities too

11. If we get into your vehicle because you offer to take us somewhere please consider that loud music may trigger some of our children and aggravate them and the polite thing to do will be to ask if you can or should play music in the first place.

12. Stop assuming you should feel sorry for us. Empathy, not sympathy is what we appreciate most. If our children are having their moments in public, ask how you can assist in any way as opposed to judging, staring, grumbling and pitying. Nearly all of us have accepted our fate and we love our children as much as you love yours. We laugh with them, talk with them, offer them physical and emotional affection as much as you do with your children.

For more information on children with disabilities or support visit the A Very Special Disabilities Forum.