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.
accommodations
Simple description of SPD
Getting “used to it”- how SPD affects me, by The Dreamer (Totally Abnormal blog).
Since I read a lot of blog posts related to Sensory Processing Disorder (SPD), I have seen many people’s descriptions of what SPD is:
“The sensory sliders in my brain are all over the place.”
“My sensory cup is too big for some senses and too small for others.”
“Everything is multiplied for me.”
These are all good descriptions of SPD, but I wanted to think of a quick one. A simple one. One that would help people that had no prior knowledge of SPD know how oversensitivity feels.
I don’t get used to things.
Driving and AS
Driving and Asperger Syndrome (The ASC Good Practice Guide). This article, which begins towards the bottom of page 7, is very thorough! Covers difficulties likely to arise (eg dyspraxia, multi-tasking, rule application etc) and tips to help overcome them, and some tips for instructors (eg being aware of the effect of using literal language, difficulties with generalisations etc).
Kids with disabilities need to learn…
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
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.
Supporting people with invisible disabilities
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.
The kindness effect
To the hairdresser who change how people saw my child with special needs, by Meredith Howell (The Mighty). The author relates a story of the judgment she and her child experienced in the hairdresser’s waiting room- and how the hairdresser’s kindness and accommodation of her child’s needs changed the attitude of the entire waiting room. I have seen this happen myself- it only takes one person to stand alongside the family, to change that toxic group mentality.
Mum-advocates
Famous Special Needs Moms, by Kerith (Brielleandme blog). In the absence of famous special needs moms to use their celebrity to highlight disability causes and make an impact, Kerith writes:
We aren’t famous, but as special needs moms, we are all role models. We teach people how to treat our children. We extend the cause of disability rights with every IEP meeting and every time we question why a business isn’t more accessible.
We have to work harder. Every public act we make. Every battle with our child’s school. Every blog post we write. Every book we write. They all make a difference, no matter how minute they may seem.
I am not a famous special needs mom. But, I am contributing to the cause.
I learned very quickly that advocacy wasn’t optional. Tiring, but worth the effort (our children are always worth the effort!). Like Kerith, I hope that my many little acts of advocacy will eventually add up too!
Changing sensory systems
Autism and a changing sensory system, by Judy Endow.
Regardless of age, all autistics need to be kind to themselves when their sensory system changes. It isn’t easy because sensory differences, whether overload, not enough input, distorted input or a processing, storing or retrieving difference – all of it winds up affecting the way we behave.
A good reminder that sensory needs for autistic people change over time, and the sensory regulation strategies that worked in the past may not be what’s required now.
Healthcare Toolkit
AASPIRE Healthcare Toolkit: Primary Care Resources for Adults on the Autism Spectrum and their Primary Care Providers. There are two key sections- one for Patients & Supports, and the other for Healthcare Providers. The first section contains forms and worksheets, that outline the steps required for different parts of accessing healthcare (eg making an appointment, what to bring to the appointment, symptoms worksheet, things to do after the appointment)- in detail, using simple language. The Autism Healthcare Accommodations Tool (AHAT) creates a customised accommodations report for individuals to give to their healthcare providers. There is also step-by-step information for navigating the primary healthcare system, tips for staying healthy, explanations about an individual’s rights in healthcare etc.
In the Healthcare Providers section, I particularly liked the section about Caring for Patients on the Autism Spectrum. So many of the issues raised in articles like this and this are addressed here, eg don’t rely on spoken communication, use precise language, allow time for slower processing speed and real-time communication, minimise distracting sensory inputs etc- all with practical tips accompanying the description.
A very useful resource!
lovenlearning 