We took PanKwake to the American embassy today to renew her passport. that meant getting up at 6AM. Two bus rides totally almost an hour. Standing in line outside for about half an hour. Then waiting in various lines inside for another hour. Then getting back home, which was a bit more tricky. But we managed it ALL without a meltdown…and set up for role play for her carer tomorrow…AND went ice skating with her friend.
If you have ‘normal’ or neurotypical kids that may seem like nothing compared to scouts, little league, band and soccer practice. But to an autism Mom…today was a MIRACLE.
I can remember having to leave my shopping in the store because she could not wait one more minute in the line. The florescent lights, cold food/freezer aisle, the bakery smells and so many people making so much noise.
But on Saturday while we were getting our passport pictures, I needed to pick up just a couple of things in the store. The moment I stepped inside I was like…OH NO! Busy does not cover it…it was enough to hit all my crowd buttons. I almost turned around and left…and I was prepared to leave the shopping once again…but we made that too.
Another autism family was not so lucky. I had noticed them when we first went in. Their teen daughter was already agitated…arguing about a purchase. Ten minutes later as we stood in line they were in one near us…and she lost it. Throwing some things down, screaming and cussing.
My heart went out to her parents. If I had been alone I would have offered to run interference…but I could not risk turning it into a double meltdown. But I did what I could explaining autism to the store guard and couple others.
This says it all…
In case you have not guessed it…I am a militant. And I make my voice heard. I do not tolerate…stares…nasty comments…heavy sighs…or rolled eyes. I will call your ass on it every time. I have had screaming matches, quote bible verses and yes…told people to FUCK OFF.
You see the cold hard truth is that we are not much better than Nazi Germany when it comes to the way we treat those who are different or challenged. Because before Hitler went after the Jews, he came for the disabled first. Our own history is not much better. Even just two decades ago, the severely autistic were often institutionalized…and in many case prison camps were nicer than those.
Maybe we want to pat ourselves on the back and think we have come so far since then.
Most people still treat you like you are bad/evil for not keeping your ‘problem’ at home…behind closed doors. I have been told…well, then why do you take her out? My answer is all REAL Tara…Because my child has as much fucking right to ride a bus as you or anyone else. And if you don’t like it…piss off.
I have gone head to head with the local gym to have her included in the ‘normal’ trampoline classes and not forced to use the ‘special needs’ ones. I don’t back down or off.
But I also do my best to try education first…informing others of autism…and helping them to understand what it is and is not. As I have with this blog for April is #AutismAwarenessMonth.
The thing is that being AWARE is not enough. What we want and need is ACCEPTANCE. Awareness is to Acceptance what Like is to Love. And how many of you out there have ever cringed when a lover said…I really ‘like’ you. At that point, most women (the ones with dignity anyway) walk. It just ain’t good enough, folks.
So what DOES acceptance look like though? Something like this…
Let’s go through those one by one…
Ask questions. That is one thing about autism…we lack the usual socially polite filters. One of the first things I worked with PanKwake on when I took her out of school was…appropriate and inappropriate. I drew the line at teaching her to lie even white ones or at stopping her questions. She was told that as long as she asked politely then it was okay. And that applies to all of you too. Instead of snide comments about her being too big a girl for a buggy, try asking her why she needs one. She will explain ALL about how tired her legs get sometimes. And I do mean…ALL.
Understand. This one may not be the best way of saying it. No one truly understands another person’s trials. I readily admit that I do not ‘understand’ what it is like to parent a more severely, non-verbal child on the spectrum. Apples and oranges. But that is different than BEING UNDERSTANDING. Simply said…stop judging me…or anyone else for that matter.
Tell a friend. And not just in the month of April either. Autism is not leprosy. But we need to stop treating it like some dirty secret. The latest figure that some people are tossing around is 1 in 50. That is 2% of people on the spectrum. The most important thing we can start doing, folks, is BREAKING the silence. Let’s start talking about it…not just with other parents of autistic children but with friends and neighbors…and strangers.
Include. Inclusion or mainstreaming is a big word…and being honest it is NOT always possible. I wasted a whole Saturday afternoon and upset PanKwake’s routine for three days by trying to include her in a friend’s birthday party. Sometimes the most important thing is not going to prom…those dresses are expensive, only the ‘in’ crowd have fun and oh, who needs it anyway. But damn, it sure was nice to be asked. That is what including is…reaching out, trying and being willing to meet half way. That’s all we want…and we will learn to say ‘thank you but not right now’ one day.
Show your support. This could be anything from running a marathon for an autism charity to voting at the PTA to making dinner or taking kids to the park for a family. Maybe doing a load of laundry. Or even just listening and offering a shoulder to cry on. Just be genuine is all.
Make a difference. If you did all those things…trust me, you would make a hell of a difference in the lives of families on the spectrum…our communities and this world.