Recognising Invisible Disabilities

There are so many things I like about this post! It starts with a Youtube clip called “I’m Brianna Couture”, three girls all posing as 15-year old Brianna Couture, who all describe Brianna’s invisible disability- but it’s not till the end of the clip that the girls divulge which of them is the “real” Brianna Couture.

Too often, when discussing inclusion in faith communities, I have heard: “We don’t have any members (of our congregation) with disabilities, so we don’t really need to think about inclusion.” Really? There are NO members with disabilities? Watch the video again.

We don’t “do inclusion” for our members. Rather, creating an inclusive community is about being ready. When we wait until someone comes through our doors, often it is too late and the accommodations become reactive. True inclusion is proactive.

ASD/NT Communication differences

I didn’t mean to be rude- communication differences and Autism“, by Jeanette Purkis.  After giving a couple of examples, she writes:

The reason these misunderstandings occur is usually a differences in communication styles. There is nothing wrong with either of these styles, they are just different. The issues seem to arise when one group interprets the other as if they were using the same style. Sadly, due to these communication differences, we [Autistic people] are often thought to be unpleasant when we are not.

I am a very kind and respectful person. The idea of upsetting or offending anyone fills me with horror. I want my impact on the world to be positive. I want to help people and make their lives better. I am respectful and inclusive to a fault. The idea of hurting anyone’s feelings appalls me. So how do you suppose I feel when through no fault of my own I say something which is deemed offensive or rude simply because I communicate differently? 

It might go some way to explaining why Autistic people can be overly apologetic and socially anxious.

Children’s books about tough stuff

So many parents turn to books to help explain some of the more difficult aspects of life to their children, so I’m always on the lookout for lists of books that tackle the tough subjects.  This list contains books about divorce, potty training (this one has a lot of good reviews on Amazon), anxieties, death, being different (several books), bullying, bad behaviour, moving, cancer, etc.

Supporting competence

Supporting Competence: the parent’s journey (Profectum). This presentation features Ido Kedar, his mother Tracy Kedar, and Elaine Hall.  Ido wrote a very insightful book called “Ido in Autismland”, which I have reviewed here, and Elaine is the author of “Now I see the moon”.  For those who can’t access Ido’s book, this is a great summary/introduction to his story, and his passion to see parents, therapists and teachers presume competence in non-verbal Autistic people, and Tracy and Elaine tell similar stories.

Advice to parents of newly-diagnosed

Advice to parents after an autism diagnosis, by ASD Dad. A very positive list!  Includes tips like:

  • nothing about your child has changed- they can just access services and support,
  • presume competence,
  • get to know teens and adults who have autism- they have great insights,
  • let go of your expectations and live in the present,
  • remember that your love and acceptance for your child is what matters most.

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.

Picky Eater Strategies

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.

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.

Presume competence, in me

Presume competence, in me (Autism Bubble blog).

I’m tired of seeing great, loving parents, who never stop looking for ways they can do better for their kids being beaten down, and feeling like they can never be who, or what their children need.

We struggle to accept compliments, or encouragement as parents without feeling obligated to be offended on our child’s behalf, when usually all the person is saying is, “Hey, you’re doing a great job, keep it up” without meaning anything derogatory about our kids, or about autism for that matter. I say that all the time to my friends with neurotypical kids, because parenting is hard, and their response is usually ‘Thank you, I really needed to hear that today.”. So why is it so wrong for us to need and accept the same validation as parents from others?

Stigma of invisible disability

6 things you must know about the disabilities we can’t see, by Julie Zeilinger.  The needs of people with invisible disabilities aren’t always considered, their experience is frequently questioned, and sometimes they are accused of lying or making excuses.  This can lead people with invisible disabilities to downplay their experiences, which perpetuates the invisibility and stigma.