Posted in Autism, Uncategorized

Neurodiversity Now

1autism8Autism is isolating. Not just for those that have it, but for their loved ones. It’s not always obvious or deliberate, it’s just there. People get tired of hearing excuses why you’re not available or why your child acts a certain way. Many try to be patient, but it’s a long haul.

The most subtle one I’ve noticed is being excluded from parental chats about children. Your child has special needs, therefore any pregnancy, birth and child-rearing experiences became null and void. Most don’t want to hear your experiences, advice, or memories. I have to guess they don’t pertain to them or they don’t want to think they ever could.

My understanding is this is mostly true for parents with other special needs children as well.  I suppose that is why parents, grandparents, etc. of children with disabilities end up talking to each other, form groups, etc. because they have a better understanding of each others needs.

I suppose it’s a fear factor or a subconscious furrowed brow that says why would I, with my normal child want to hear about your child?  It’s rarely intentionally rude, but it’s as though somehow if I give advice their child will magically get Autism.

I’ve generally learnt to shut my mouth (a difficult feat for me). Though apparently I have to listen about how ‘perfect’ and ‘adorable’ their child is each time they eat, drink, walk, talk, smile, and burp.  I guess I feel the same way about my child.

Somehow, some people believe my child is less because of his Asperger’s Syndrome. And yes, I’ve had people ask me if I would rather have a ‘normal’ child, not many, but it’s happened.

I don’t like to put people into boxes. What is normal? My child is different, but never, ever less. I suppose similar protective feelings cause their ignorant reaction, but why not just accept neurodiversity and stop making painful distinctions?

The intent of more acceptance by opening the world through communications, travel, knowledge, etc. was a noble aim, but I’m afraid intolerance is still very powerful. I hope it’s just habit, not our nature.

People with special needs or differences, challenges seem to arouse two reactions in people: one, a caring or protecting instinct. This is ideal, but not as common as we would wish. I am always thankful for these people as they add so much to our world, and the world.

Then there is the second reaction that is not exclusive to special needs and seen way too often: predatory.  They bully, victimize, abuse, demean, demoralize and are generally maltreat those they consider weak. This is wrong on so many levels.bullying1

Why the polar opposites? Their differences are like the canary in the coal mine for character, you can tell a lot about a person by how they treat the most vulnerable members of a society. As it happens, those few sad apples don’t usually spoil the bunch.

Neurodiversity now.

Posted in Autism, Fibromyalgia, Uncategorized

Fibromyalgia is a Four Letter Word

This isn’t a whiny post (at least I’ll try, no promises), or a ‘it can be fixed blog’, or whatever. Just a few thoughts about why people think Fibromyalgia isn’t a real syndrome, that it’s just lazy, unmotivated people and mostly, why I don’t have all the answers.

 

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Let’s begin at the end, I don’t have all the answers because I don’t sleep enough.  Also, I’m not a million years old.  In addition, I’m certainly not a super genius.  Oh, did I mention I don’t sleep enough?

People prefer to think people with disorders such as Fibromyalgia are lazy because they don’t want to accept that you could wake up one morning and have something like that or Chronic Fatigue Syndrome or Lyme Disease and so on.

Instead of doing the whole there-but-for-the-grace-of-God-go-I thing, many people just decide that people with these illnesses could do better if they just got up and did something, or they just aren’t motivated, or they’re lazy, or they’re not trying.

It’s easier to believe that than believe someone who was full of energy and often an A Type Personality can suddenly be fatigued, full of pain, insomnia, frustrated, sad, have massive struggles to function, and so on.

fhfif4Therefore, Fibro becomes a joke, a stain, a dirty word because otherwise people would have to accept the reality that people get sick.  They get chronic illnesses, they get terminal illnesses, and they live a life of agony and sometimes, they die.

It’s people saying someone with cancer should fight the cancer as though that will fix everything.  I wonder if people ever thought of how that makes people feel when you’ve lost a loved one to cancer?  Oh, so my loved one just didn’t fight hard enough, well, thanks, that makes me feel so much better.

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The same goes for those who’ve lost a loved one to suicide. I’m sure they feel horrible enough without others implying their loved ones gave up, chose to leave, or just didn’t fight hard enough.  Yes, poking a toothpick at a dragon works so well.

I don’t live in someones head so I can’t say if they tried, if they fought, or if they chose, but neither does anyone else so why are so many people qualified to make these judgmental statements?

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Instead of mocking someone with an illness, try having empathy for him or her.  I’m sure there are some pitiable individuals who would prefer to be ill than well, but come on, does anyone seriously believe that’s a majority?  Most people would choose to be well. 

Most people would choose to have a full life, a life free of pain.  Most people would choose to beat cancer. Hell, most people would choose not to get cancer at all.  Most people would choose not to have a mental illness.  If there was a choice involved.

People are finally coming around to the belief that people who lead a homosexual lifestyle didn’t chose to be that way, it’s just the way they are. It has taken a long time and there are still haters out there, but I bet so many people are happy to see a light at the end of that rainbow.

asgoodas5I wonder when that day will come for people with chronic illnesses like Fibromyalgia, or people with mental health issues, or people with Autism, etc.  I wonder if or when people will see them, really see them, for who they really are:  your Mom, your child, your sister, your friend, your co-worker, your Dad, your teacher, your brother, your minister, your neighbour – just people.

Don’t judge people.

Have a little empathy.

Those people might be interesting, or fun, or brilliant, a hope for the future, a good friend, but you’d never know because you made assumptions.

Don’t miss out.