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Tuesday, April 4, 2017

Talk About It: Seeing What's Hidden ~ Invisible Disorders

I am  not a fan of the word, 'disabilities'. It implies that an individual is incapable of doing things that others can do with ease. I prefer to use, 'disorder' as this, to me, states that there are still hurdles, but they can be faced and overcome by doing things in a different way.

In advocating for individuals who live with invisible disorders, I try to instill that distinction in those I talk to. It is essential to (1) see the person for who they are FIRST, (2) be open-minded enough to 'see' and learn about what isn't obvious and (3) be willing to give the necessary support that the individual needs in order to tackles tasks in the best way they can.

I struggled in this area repeatedly with my children, who both have SPD and Spectrum struggles. I faced many educational professionals who were so stuck in the mindset there was a right and wrong way to do every task, without even trying to understand that my kids could complete an assigned task just with a tweak or two. My daughter doesn't want to finger/hand paint because she hasn't learned how to cope with the tactile discomfort? Give her options so that she can still participate to her comfort level (eg: a bucket of water beside her to wash with or allowing her to use gloves, etc.). My son has trouble writing because his fingers can't hold the pen/pencil properly, or gets frustrated with not 'seeing' the letters the way he's supposed to? Give him the tools he needs to help him focus (eg: a rubber grip on his writing tool; lined paper and traceable letters to 'show' him how they are supposed to look).

I spent many days in the classrooms with the teachers teaching them how to teach my kids. Today, some schools are actually implementing strategies for kids, like mine, and training teachers to see when struggles stem from a not so obvious reason and not just because the child is trying to be disrespectful, defiant or rude. Here in Edmonton, we actually have schools that have SPD rooms and teacher helpers who understand how to work with our kids. I am very impressed with this movement as I had to fight just to get my kids in school AND get support for them.

All of it was very difficult to go through initially, but I perceive it all as a life lesson. Like many other people, I was reactive to others' overt behavior before I had my children. Then one day, as I sat in the SPD therapy gym watching my daughter go through her routine (and getting frustrated with herself), I remembered a fellow student in Grade Six who always seemed to get angry when faced with writing assignments, reading, following what the teacher was saying during oral lessons and freaking out during gym class or recess. Was he just being difficult, or was there something under the surface that no one either took time to dig to or tried to understand him?

So, from someone who has been surrounded by, and helped, family/friends/acquaintances/strangers with invisible conditions her entire life - depression, bipolar, ADHD, OCD, anxiety, chronic pain, diabetes, SPD, Spectrum disorders - try putting judgement aside when you see someone acting/reacting differently than you would. Then be brave enough to figure out what's going on (in the most non-invasive way possible) and what you can do to help, even if it's just listening.

Sometimes listening is the most important and appreciated action you can undertake. Listening leads to understanding and that leads to embracing the whole person.

And THAT, in the end, is all that these children, adults and their families want.

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