Pave the Way info session

Focal are hosting a free information session for parents and carers, on Sat 14 Nov, from 10am-1pm at their Ipswich office.  Focal arrange multiple different information sessions throughout the year- I have attended several, and have found them to be very well-organised and helpful.  I recommend joining their email list to keep up-to-date with what’s on.

This information session is run by Pave the Way, and is called “Planning for Now, Tomorrow and the Future”.  This presentation is available frequently throughout the year, in different places as listed on their website.  I found the information shared to be very useful- rather than playing ostrich about our loved one’s future, it is possible to plan a good life for them, and Aimee explained about some of the tools available to help with this, including normal and Enduring Powers of Attorney, Guardianship and Administration, wills, trusts, Special Disability Trusts etc.

Full information available in the flyer below.

Pave the Way Flyer _2015-10-14

Communication about disabilities

Disability Services Queensland has put together some great resources about how to communicate with people with disabilities, and additional tips about guide/hearing/assistance dogs.  Towards the bottom of the page, there are several links- two in particular are exceptional.

The first is “A way with words: Guidelines for the portrayal of people with a disability”.

The purpose of this booklet is to promote inclusiveness and the fair and accurate portrayal of people with a disability.  It is intended as an aid for professional communicators, such as journalists, writers, producers and broadcasters, and provides suggestions for appropriate language, interviewing techniques and media coverage involving people with a disability.  

While that description does sound rather dry, the booklet is very engaging and readable, with great cartoon illustrations throughout.  Some of the recommendations include emphasising individuality (eg emotions, interests, problems, talents, frustrations, faults and roles), not disability; avoiding superhuman or excessively emotive portrayals, and not focusing on the person’s disability unless it is important to the story. There is also a list of words to avoid, with acceptable alternatives.  One suggestion given was to use the phrase “uses a wheelchair” instead of “confined to a wheelchair” or “wheelchair bound”, because a wheelchair provides mobility, not restriction.

The other link that I found useful was the Medical Signing Board.  There are Yes/No/I Don’t Know options across the top, front and back models of the body in the middle, 15 options for medical issues on the left (eg hot, cold, vomit, headache, bleeding, broken, seizure), 12 communication options on the right (eg need more information, call someone, worried, too loud, hungry), and a visual 1-10 pain scale at the bottom.  The second page lists some things paramedics might do (eg blood pressure, take temperature, bandage, medicine), a short social story, visuals for wait/be still/calm down, and some interaction tips for the paramedics.  Very thorough- wish I’d had this for Abi’s last admission!

Buddy Bench

This lovely idea is a great way to minimise bullying and increase inclusion.  A young boy, having seen a similar idea at a school overseas, raised it with his principal and school board, who agreed to implement it.  Kids who feel lonely at recess can sit on this bench, and be invited to play or walk with others.  The website has several different strategies with which the benches can be used- Christian’s Buddy Bench.

Brisbane subsidised shared cabs

Brisbane City Council organises shared taxis at scheduled times for residents who find it difficult to get to their local shops.  To be eligible for this service, you must be over 60, mobility impaired, or a Pensioner/Senior Card holder- and you may be accompanied by a carer or a child under your care.  Costs $1-$3 each way, and covers many suburbs and shopping centres.  Looks like a very helpful scheme- may be worth asking if similar opportunities are available in other cities.

Autism and SN Guides Qld and beyond

One of the incredibly resourceful ladies I’ve had the privilege of “meeting” through Facebook has put together two very indepth resource guides that she is keen for people to share wherever they would be useful.

A Resource Guide & Ideas for Therapists, Teachers, Parents and Carers working with people with Special Needs- covers a multitude of topics, and is well worth checking out.

The Queensland Autism Parents Handbook is 101 pages and is a comprehensive guide to autism services, support, tips and ideas for Qld. The book is most relevant to Qld but is a valuable source of info wherever you live.

When life sucks for kids

When life sucks for kids, by Kirrilie Smout. Subtitled “Ideas and tips for when you feel mad, worried or sad- or life gets kind of messy”. While I haven’t read this entire book, I was impressed enough with the content of the sample chapters (link is just over halfway down the page, under the Buy Now button and cover images) to link to it here.  This book is suited for 8-13 year olds, and the author has a previously-published book called “When life sucks for teens”.  In the sample chapters, I particularly liked the SHOPS acronym for how to initiate conversations- ask questions about Screens, Hobbies, Other People and School- with half a dozen examples of each.

Church and disability inclusion

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.