The View From A Wheelchair

Imagine if no one spoke to you directly, choosing to direct all questions and conversation at the people around you as if you didn’t exist, just because you were wearing black shoes? Or what if you couldn’t be included in the class photograph with all of your classmates and friends at school because you were wearing black shoes and couldn't fit on the podium?

This has nothing to do with black shoes obviously.

Sadly these are real and common examples of how people of all ages, but in particular children, are treated if they use a wheelchair for mobility.

There is a common misconception that because you rely on a mobility aid, in particular a wheelchair, then your intellectual and communication capacity must also be impaired. Add the ‘burden’ of youth or childhood to that scenario and you could be downright invisible.

So to add to the limitations of living at seat height and being unable to do simple things that most of us take for granted, like to stand and make eye contact to chat, or ask for assistance over a high counter, you are treated as a non person and talked about as though you are not even there.

It’s a pretty bleak picture, but it doesn’t need to be that way and by using a little common sense and understanding you can help break down the barriers for people of all ages who happen to use a wheelchair and make a lot of difference.

Don’t make assumptions about the person’s mobility or intellectual capacity. Speak to them as you would any other new person you meet, but don’t ask rude questions either!

Greet them as you would anybody else with a handshake and a smile. And for heaven’s sake don’t pat them on the head as one high profile politician did recently.

Don’t touch the person or the chair without permission. Would you touch any other stranger in such a way? The chair is an extension of their personal space. Try to get down to their level and make conversation at their eye height whenever possible.

Don’t stand too close in a group situation and block the person in the wheelchair from others in the conversation. Widen the circle and include them.

In a perfect world, any person in a wheelchair, regardless of their financial circumstances, could choose to have a standing wheelchair if they wish, allowing them to navigate the world at different heights depending on their activities. 

(image via https://www.facebook.com/StopDiscriminationagainstSpecialNeeds)

Perhaps that perfect world exists after 2018, when DisabilityCare Australia is expected to have been rolled out to all those eligible. At least it would be nice to think that one day this could be the case if they so choose!

How Does Our Sensory System Work?

We often talk about Sensory Processing Disorder but how often do we think about our senses and where they get their stimuli.

A sensory system is made up of sensory receptors, neural pathways and different sections of the brain involved in sensory perception. Commonly recognised sensory systems are those for vision, hearing, somatic sensation (touch), taste and olfaction (smell). Receptive fields have been identified for the visual system, auditory system and somatosensory system, so far.

Sensory processing is the ability to interpret the information the brain has received.

Throughout the day your brain is receiving information related to all the senses and its job is to work out which is important and which is not. The brain has a tough job to do and, depending on our emotions, our response to each of the stimuli can vary.

There is some excellent information in this clip entitled Sensory System which will help explain how the senses work and how to “make sense” of them. We hope it gives you some more insight into how and why your child reacts when his or her senses are triggered.

Words Can Hurt As Well As Sticks And Stones

“Sticks and stones may break my bones, but words will never hurt me,” is a rhyme that many of us may have heard when we were children. Sadly, research shows that there is little truth to this rhyme, as name calling and other forms of bullying often result in negative effects for young children, teenagers, and even adults. The detrimental consequences of bullying are felt by both the victim of an act of bullying, as well as the perpetrator.  

Research currently shows that one in four children in Australia become victims of bullying, and victims can be as young as three years of age.  According to a recent article in the UK’s Birmingham Mail, research also shows that autistic children are more likely to be victims of bullying, and that this tendency to be bullied actually increases for autistic children as they grow older. Bullying can be an especially distressing event for children along the autism spectrum as well as their families.

Bullying is not just “empty and meaningless” words. Words can in fact have harmful short and long term effects. The effects of being bullied are devastating, as research also shows that bullied children are more likely to exhibit symptoms of depression, are nine times more likely to contemplate suicide, and girls that are bullied as young children are especially likely to continue a pattern of victimization into adulthood.  

News reports from around the world are also often filled with stories about children or teenagers who have committed suicide after being bullied, but bullying is not confined to childhood, as it can happen in the workplace, and even adult friends and neighbours can bully other adults and even children.

The world was recently shocked by reports of a letter that an unidentified neighbour wrote to a lady who was caring for an autistic child calling him a “wild animal” and advising her that she should euthanise him because of his autism.

So, in a world where teasing and bullying are commonplace, how does one raise a child that is resilient to the effects of bullying, especially if one has a child with a disorder along the autism spectrum?

Get Involved – As a parent or primary caregiver you may already feel “involved” just dealing and coping with the day to day challenges of raising a child with autism, but it is imperative that you interact with your child’s teachers and others in the classroom to both educate them about autism as well as to be on the lookout for signs that your child is being bullied. This is true whether or not your child attends a “mainstream” school, or a school that is centred on the education of those with special needs.  

Seek Support – As awareness of autism spectrum disorders increases, local and regional support groups have been forming all across the globe that seek to provide a place for members to learn about autism, as well as to learn about coping strategies and to seek and provide emotional support for one another. These groups are invaluable to help members acquire the tools that they need to support one another in their efforts to raise their children.

Advocate – There are now several groups in Australia and across the world that are seeking to educate others about the real harm caused by bullying as well as to come together to work for positive change. Bullying No Way is just one of the many groups that have resources for parents, kids and others to come together to end bullying for all Australians. No Bullying is another group that can provide information about bullying and efforts to end this deadly practice. This site has information that is also especially for children and adults who have disabilities and are victims of bullying and other forms of discrimination. 

A greater awareness of the subject can go a long way in stopping bullying before it becomes a major problem in a child's life.

Waiting In Line

I am not a fan of standing in long queues no matter where I am but usually they are fairly orderly lines, made up of bored adults.

If we are bored, you can imagine how a child would feel after a few minutes. If the child has a sensory disorder standing in line is like torture. It’s not just the time spent waiting, which drags on and on and on… It’s the noise, the closeness to the people behind or in front of you, the bumping of others into their bodies and the pressure to stand there quietly while it’s all happening.

Waiting quietly in line is part of the normal school day so it’s something your child will have to cope with often.

Over at A Sensory Life you will find a fabulous sheet to print out and hand to your child’s teacher. It explains why your child has difficulty standing in line and offers some tips on how to make it easier for him or her to cope.

It’s a very useful tool to keep on hand and I encourage you to pop over and download your copy.