I’m Angry And You Are About To Get A Lecture About Spectrum Parents

Three times in as many days, I have read blogs written by parents whose children  have Autistic Spectrum Disorder or Autism.

Three times in as many days, I have been furiously horrified by the comments left by some readers.

It seems to me that a lot of folks, likely without intent (always the benefit of the doubt), are blaming the parents of ASD kids for their children’s issues or behaviors. I’ve read the subtle finger-pointing (It’s a DISCIPLINE problem!) to the overt (If you didn’t do this or that, your kid wouldn’t behave that way, YOU BAD PARENT!). It’s making me really angry.

As someone who has a family member who is somewhere on the spectrum (we know now. When he was a child, the diagnosis didn’t really exist), as someone who has friends with ASD kids and as someone who has trained professionally, and personally worked with children and adults on various levels of the spectrum, I have this to say.

It’s perfectly fine to wax on about how you would handle things if it was your kid, but guess what? Unless you’ve been there to live through a full on meltdown, you have no idea. When someone you love tries to hurt you or themselves, and that child has no control over what they are doing, when you as their caregiver have been down the same road so many times that you know all you can do is wait for the storm to blow itself out in a few hours (hopefully less than eight) how the HELL can you, as an observer, offer any advice? And how dare you pass judgement.

Fine, some of it is well-meaning. Suggesting diet things you’ve read, drugs, brain hemisphere balancing, sensory treatment, blah, blah, so on, is really not helpful because you know what? These parents have likely tried it all, including things you wouldn’t ever think of. Remember this: these are their children, their babies. Can you even imagine how painful it must be to watch your loved child struggle and obsess? To go from happy and functioning one moment to unreachable the next? It’s bad enough when your kid is typical.

Before you comment to these parents, know this. These blogs are being written to educate you and as an emotional release. These writers/parents are the bravest of the brave. They are letting you peek into a world of frustration and triumph, a rollercoaster world of highs and lows even they themselves don’t understand. Please, show some respect.

Have some empathy, some compassion. It’s hard enough being a parent. Harder still parenting a child who has special needs.

If you want to help, educate yourself. Learn. Acceptance and understanding come with knowledge. But don’t judge their parenting. Trust me, they’ve done that enough by themselves.

And always bear in mind; people on the spectrum, physically disabled, mentally challenged, wheelchair bound, brain injured, mentally ill, deaf, blind, mute, one-armed, one-legged, people with Tourette’s, Down Syndrome, PDD, ODD, FASD, dementia, etcetera, etcetera, etcetera, are PEOPLE first.

We’re all here together. That’s never going to change. Be kind.

*drops keyboard, stalks off*

Simply Tricky

I’ve been having wild anxiety lately, to the point it’s almost crippling me. I find it hard to leave my house. My stomach feels as if a cobra is fighting with a … well, another cobra.

Sorry. I couldn’t really come up with anything else that is quite as horrifying to me. I HATE fucking snakes. Don’t even say snake, always say “fucking snake” around me. I’ve said before that the only snake I like is a snake that eats another snake, feels really guilty about it and commits Hari Kari. I don’t hold that god or satan created snakes. I think they fell here from some strange alien planet where the people freaked out and said “Jesusmurphy, those things are scary motherfuckers! Lets get rid of them!” and herded them all onto a meteor that landed here.

Even as I write this, my stomach is churning. Remember my craptastic adventure? Turns out, nothing was wrong. Nothing physical. I phoned the hubby to tell him the results. He said “That’s good, right?”.

No. It’s actually bad. Really bad. An illness would be simple. If this is emotionally related, mentally related, anxiety related, it becomes tricky.

Trickytricky.

With the anxiety comes the depression. With the depression comes the anxiety.

Trickytricky.

I know how it works. I also know that unless I buckle down and buckle up, do the work and tear the shit I’m carrying away from my psyche, I will get worse. That is unthinkable.

I’m ready. I can do this. It’s not going to be that hard.

Some people will have to be purged from my life. Others (my Soph, my Kathy, my Mary) I will hang onto for dear life. And my hubby. I’ve really never met a better man. He doesn’t pretend to understand. But he gets it. And he believes in me like no other.

I’ll share with you folks what I feel comfortable with as I go through this, in trust that just maybe some of it will help you or someone you love.

And don’t worry. I haven’t lost my sense of humour. I’ll still post my nonsensical bullshit to make you smile. I really love it when you laugh. It distracts the snakes. Well, that and rabbits.

I’m ready. I can do this. It’s not going to be that hard.

Be kind to each other.

p.s. As ever, I’m here if you need to talk. lgmoffat@gmail.com, twitter @gustyduck.