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Words Matter

I was working with a group of women recently demonstrating little techniques to help with grounding and calming. Most of the women in the group either had a son or daughter with learning differences or worked with someone who had. The conversation of course as usual got onto all sorts of things to do with persons with intellectual learning challenges.

your words matter living with autism

One person described her son as a person who was ‘living with autism’. I had to stop her in her tracks and say that I thought her description was so beautiful and really apt. She described the person first and the condition second.

This is a bugbear of mine since I had my own son who has Down syndrome. He has been described as a Down syndrome boy so many times and it irritated the hell out of me. The stereotypical concept that all persons with Down syndrome are so loveable drives me nuts.

Language is so important, it can cut you in two or lift you up. I often think that it is not the message that holds the problem, but rather how it is delivered and the language used to do so.

The condition is that of a learning disability but all persons with trisomy 21 have different personalities. I have met many persons with Down syndrome since we had Geoff and some are bubbly, some are shy, some are inquisitive, and some are not. That’s how the world turns, they are not how they are perceived to be and they are most definitely not all the same!

Maybe people who do not have a family member think that saying that they are loveable is their way of expressing their awkwardness. If they say something good, then that takes the pain out of the situation. But in reality, it doesn’t.

When a family member went to train in psychology, she came home one day and said she found the lecturers very insensitive as they described autistic children, downs children and that was really very upsetting for her as she remembered that we had always said to our older children, that the person comes first and the condition second.

It is such a pity that those in authority use these antiquated ways to describe our very valuable persons with learning differences. I always thought that my son was well capable of learning, he just does it a different way.

I learned so much at that workshop, how parents are so brave and stand up for their persons, for one thing, and a new way to describe people with autism for another. Most of all they had a platform where they could describe their feelings, their experiences, and their concerns and be supported by other women in the same situation.

However, thankfully I have left the anger and frustration long behind me, as we have been in the ‘system’ for thirty-five years now. But it did cause me a lot of stress at one time. In the very beginning when Geoff was about six months old, a consultant asked us at a meeting how many children we had. When I said four, he said as well as Geoffrey. Here I was holding our six-month-old baby on my lap being asked this question. I nearly went over the desk at him. I said why what is Geoffrey a specimen from outer space. My husband kicked me under the table and made a face for me to stop. Well, I didn’t then and I haven't yet!!

The ignorance of those in authority took me totally by surprise. How insensitive some were. That’s probably another book!!

your words matter living with autism

The conversation at that workshop, triggered in me all those old feelings of being disempowered, wanting a better experience for my son, and most of all needing to be heard. I’m so glad I can acknowledge they were old feelings and I see how far I have come in dealing with them now.

Working with parents who have family members with learning differences, has always held a special place in my heart. I want to help them to empower themselves because knowledge is power no doubt about it. But so is being able to regulate your own emotions and keep yourself healthy and well.

The courage of parents like me is so overwhelming. We go above and beyond for our people with learning differences, who don’t have a voice of their own. We are required to grow another skin, (which some people at the workshop found interesting), stay on top of research, and look at what's new and more to the point what’s acceptable for our son or daughter. Oh and keep house, cook dinners, wash clothes, manage budgets, ferry kids to and from school and clubs, and work in between, etc., etc., We are the best supporters of each other that is for sure. Lots of information I know I got from other parents. We are so powerful.

Keep shining your light oh powerful ones.

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