Kids with disabilities need to learn…

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Adult with disabilities shares what kids with disabilities need to learn, by Andrew Pulrang.

What skills do children with disabilities need to become independent adults? There are plenty of transition planning guides and parenting tips to help answer this question. I would like to offer some ideas to consider, as an adult who was once a child with disabilities.

At times it may seem like independence is determined by the type and level of disability a person has, but it isn’t. People with all kinds of disabilities live independently. What they have in common is a set of key skills and habits… (very sensible and practical list!)

Judith Heumann, one of the leaders of the disability rights movement, helped define Independent Living, when she said, “Independence is not about doing things for yourself. It is about having control over how things are done.” You can be independent and in control, even if you literally can’t lift a finger or speak an audible word. You just need the right tools and supports.

Church and disability inclusion

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When Church Hurts, by Shawna Wingert (Not the former things blog), and Why Church Is a Burden for Special Needs Parents, by Sheri Dacon. This is a subject not often discussed, but it needs to be! People with disabilities often struggle to find churches that are willing to accommodate, accept, engage with, integrate and welcome them. Shawna writes a very descriptive account of her son’s sensory overload at church- crowds of people, various smells, loud and louder sounds. She also gave examples of judgment for non-attendance, judgment of parenting abilities, and exclusion from Sunday school. Sheri recounts her tears, when her son’s new Sunday school teacher treated him as a child, not a problem- and she learned that it was okay to expect love and acceptance.

We have not often attended church as a family, since our youngest, “Abi”, was little. She finds the noise and quantity of people difficult- we have spent several services walking circuits around the carpark, or laps up and down the stairs. She’s not always quiet and still, so although I did monitor her noise/activity level, I’ve been “invited” to spend the service in the creche, which had no video/audio input, more times than I’d care to remember. I’ve accompanied her to Sunday school, but there was nothing in the lessons that she could participate in. In the end, we figured it would be more comfortable for one parent to stay at home with her- because neither she nor her accompanying parent were actually participating in the service.

These experiences were across multiple churches. Two of the churches we’ve been to were very willing to work with us to include Abi- but weren’t the right fit for other members of our family. In particular, our older daughter, “Hannah”, is wanting solid teaching and discussions and connections with likeminded peers- yet the Sunday children’s/youth ministry at many churches ends as children finish primary school. Those churches were a great source of healing to me- to know that there were churches where we were welcomed, and could attend as a family.

The last few years have been an intensive immersion in learning about autism, for me. As evidenced by this blog, I’ve done a lot of reading, and have also attended numerous courses. And I’ve come to the realisation that just as Abi has the right to an academic education, she also has the right to a spiritual education. But more than just an education- I believe she has the right to be loved, accepted and included as a member of God’s community. However, in order to access that for her, I will need to advocate and educate.

While I can’t speak for all Christians or all churches- in most cases, I don’t think that the exclusion that many people with disabilities have experienced is deliberate. I think that many Christians/churches simply don’t know how to engage with and integrate people with disabilities. They may not be aware that their programs/services aren’t disability-friendly. Sadly though, there are some churches that are unwilling to integrate people with disabilities- therefore they’re not places I’d want to be, anyway.

The problem is, I don’t have the energy for education or advocacy of this magnitude at the moment. If I’m going to do it well, it will be a big job. I don’t want to start, then it all end up a failure because I wasn’t able to follow it through. There’s a lot of big things that have happened in our lives- some related to autism, some not- but we have learned that we can’t do everything immediately, so we’ve had to prioritise.

In the meantime, as I ponder the specifics of what inclusion could look like for Abi, I came across a wonderful program run by Christian Blind Mission in Australia, called Luke14. Luke14 is a CBM Australia initiative equipping churches to be places of welcome and belonging for people and families living with disability.
“When you give a banquet, invite the poor, the crippled, the lame and the blind… and you will be blessed.” (Luke 14:12-13)
I could easily link to every page on the Luke14 site, because there is so much good information! It’s nice to know that there are programs available to help churches learn how to welcome people with disability- and really integrate them.

I hope to see such programs implemented in many churches in the not-too-distant future.

Describing Disability

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29 ways to describe a disability to someone who doesn’t understand it (The Mighty).

Describing a disability, disease or disorder to someone who doesn’t understand it can be tricky — particularly if the condition isn’t common or visible. Overly scientific descriptions aren’t usually easily understood and ignoring the topic entirely isn’t an option.

Some great informative and creative descriptions here, covering a wide variety of disabilities, eg:

“My son has apraxia, which I explain [like this]: ‘It’s like a marble in a drain. Sometimes the water can pass, other times it gets stuck.’ His speech processing is exactly like that.”

Picky Eater Strategies

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3 Picky Eater Strategies that Work, by Sarah Remmer. They may work for you … they may not, but they’re practical and simple, and similar to what we’ve used in feeding therapy (SOS approach by Dr Kay Toomey- Sequential Oral Sensory).

Just for interest, this post has the 32 steps to eating chart, plus some description about how it was implemented.

Progressive Muscle Relaxation

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Progressive Muscle Relaxation Script (SkinNurse blog). While I understand the benefits of progressive muscle relaxation, I haven’t found too many scripts that appeal to me. I really like this one- it’s very practical, and something that children could easily relate to, eg squeezing a lemon, stretching like a cat, chewing a hard carrot, squishing toes in mud etc.

Supporting people with invisible disabilities

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4 ways to be an ally to people with invisible disabilities, by Sara Whitestone (Everyday Feminism).

As someone who lives with an invisible disability, I struggle on a daily basis to live with my ever-changing abilities. My condition reacts to a variety of factors, so my symptoms vary on any given day. It’s a constant juggle between wanting to do as much as I can without hurting myself while dealing with the social repercussions of my fluctuating abilities. In my experience, strangers confront me every time I go out in public to validate my disability to them in some way – and this is a common experience.

I appreciated reading her experiences and recommendations, especially:

It’s safe to assume that if someone has a certain accommodation, they received it for a reason – but we can never assume what that reason is. It’s important not to police people when they use these accommodations – or if they don’t.