Gonna Show My Crazy…

Sorry that I have not been around much these past few days. I have been intensely busy. My son that teaches in China is home for a month holiday, which of course throws PanKwake’s routine off. So I am dealing with all that…plus trying to finish up that novella for the anthology…and clean the house.

But I took a break on Friday to do something ‘different.’ I took PanKwake to Comic Con. Yes, I was crazy enough to take a nine year old Aspie little girl to a convention of sci-fi fans. And you know what? She loved it. Hell, probably half the people there were on the spectrum somewhere. I swear geeks are going to rule the world in a few years.

In fact, one of my wildest theories of Asperger’s/autism is that it is actually a Darwinian evolutionary jump of the human species. I teach PanKwake that she is a super hero, like Jean Grey of X-Men fame. That her brain simply works different. That we need to train it the way that Professor Xavier did Jean’s. That she is in fact as Magneto says…the next jump in human evolution.

And before you think I am completely crazy…consider the world in which we live. Society, its structures and rules are archaic. We live in world that continues to be ruled by Industrial Age conventions such as time clocks, offices and corporations that use and abuse their workers. We have and continue to destroy our planet, raping her of the precious resources we need to survive. We continue to let petty squabbles and differences divide us into religions, factions and nations that are at times more arbitrary than real.

Worst of all, we have a hundred years of psychiatry, psychology and child development research that shows us what it takes to create happy, healthy and emotional functional adults. Yet we insist upon repeating the mistakes of the past. Doing to our children what our parents did to us. All in the name of perpetuating those screwed up societies.

BUT our kids see through all that. They refuse to follow rules that do not make sense anymore. And they have the guts we lack to say…NO. They have meltdowns rather than tolerate stupid rules. They tell the truth…all the time…even when we would use little white lies. They refuse to be broken and re-molded into something that is no longer useful.

HeroesThat makes them TRUE super heroes in my book. And us? Their parents? Maybe instead of trying to force them into those molds of what society and other people think they ought to be…we too need to say…NO! Or better yet as PanKwake coined…Asperger’s: Deal Wif It.

Oh, did I mention that I went as Wonder Woman? Yes, that is right. I even was crazy enough to sew a costume (except for the red corset top and socks that is) and get on the London Underground dressed as the 70s iconic female super hero. By the end of that day, I felt like I had earned it too. Managing my princess and the Tube?!?!

Like the meme that inspired this latest craziness says…She needed a hero. So she became one.

Seeing RED…

I wasted my morning. Two plus hours of my special ME time while PanKwake is with her carers. I could have been shopping, cleaning, sewing or most importantly writing. How did I waste it, you ask? By attending a support group meeting for parents with autistic children. But wait, how can that be a waste, you say? Because as I have said before…Asperger’s or as the ‘idiot experts’ now call it ‘high-functioning’ is NOT the same thing as ASD. I have no more in common with the mothers around that table, whose children are non-verbal than I do with parents of ‘normal’ kids. In fact, I probably have more in common and get along better with the ‘normal’ ones.

I gave up this group three or four months ago when every single meeting was about statements and special schools, a path we have decided is not right for Pankwake. But every month the organization that runs the meeting asks you to feel out a feedback form…and every time I asked for information on ASPERGER’S. So this week I got both an email and a reminder call that it was time for the next meeting and that they were having a speaker from an Asperger’s group. Since it was at the same time as one of PanKwake’s regularly scheduled carers, I figured after pestering these folks for months, I at least owed them one more chance.

And boy do I wish I had not. Despite the title and the fact that this person was from an Asperger’s group, she spent more time talk about her other son that was further on the spectrum, and the same old crap about statements pre-dominated the meeting. To make it worse one of the staff members of the organization that hosts the group talked more about blooming statements than any thing about Asperger’s.

I am trying to think of ONE thing that I learned about Asperger’s and I cannot. At the end of the meeting, the woman from the ASPERGER’S organization spoke to me on the side and said she felt that the group was just so diverse that she needed to make it more general. I impolitely informed her…that those parents got what they needed at every other meeting I had ever attended and I was horribly disappointed that the one time it was supposed to be relevant to my situation…it was not. The organization that hosts these meetings receives massive funding from the council to provide support to all families of special needs children in the borough. I am beginning to understand that Asperger’s just is not special enough for them.

Aspie is not somewhere in the middle between non-verbal and 'normal.'
Aspie is not somewhere in the middle between non-verbal and ‘normal.’

As I said in that other post, the problem with removing the distinction of Asperger’s and lumping our kids in with the Autistic Spectrum is…that  our issues are different. I do not struggle with what is going to happen to my child after I die. I know that she will eventually be able to attend university…with support. And find her own place in this world, contribute to society, even if she is not a nine-to-fiver. My struggle is how to manage her behaviors in the here and now…until she matures and learns better coping skills. My frustration is with a society that automatically assumes my child is naughty and I am a bad mother…those other mothers never will know what that feels like because their kids LOOK autistic and as a result those same mean people go out of their way to help the poor ‘disabled’ child. And don’t even get me going on how skewed the education and social care systems are to meeting their needs and leaving us to sink or swim on our own.

Is it too much to ask for even ONE organization that can offer true support with the issues relevant to families coping with ASPERGER’S? Obviously it must be when even one carrying that name sends a speaker more concerned with autism than Asperger’s. And thanks especially to the ‘geniuses’ at the APA (American Psychiatric Association) for erasing our very existence from the DSM-V (Diagnostic and Statistical Manual…the bible of all thing mental health). It just makes our lives all the more difficult when we ask for support from these types of groups, the council or education.

The Leg Game…

Transitioning is always a challenge for those with Asperger’s. For PanKwake one of the hardest has always been saying ‘good-bye.’ For the longest time, she would simply run off without doing it…no matter how hard I tried to get her to. These days she has her own tradition. It is called the ‘leg game.’ If she likes you, then you are obligated to play it as you leave. She wraps herself around your leg. Her little arms about your knees and her legs about your ankle. Then it is a matter of pulling her off while you try to shake or pull your leg back. It is comical at times. Especially when she demands a ‘do-over’ because you or I did not follow her rules…no tickling, no shaking…and they are getting progressively higher standards…to the point that sometimes it is impossible. Usually it takes two or three goes to get out the door. But it is only way this child can transition without one of her meltdowns.

What creative solutions have you come up with to manage difficult transitions such as good-bye?

Oh the things we will do for our kids…

I put my money and time where my mouth is today and took PanKwake to Clissold park where we played in the wadding pool including a fight with water guns and then went to the play area for her fav…the zip line. I am reminded of the down side of that philosophy about keep’em busy…it tires you out as much as them.

But I did want to show you a pic from earlier this month…my 50th birthday in fact. We went to the zoo…and I climbed through the tunnels in the meerkat exhibit after her.

Zoo

Of course, there must always be limits and boundaries. Mine include…heights, spinning, going fast, roller coasters, water slides… Oh wait…maybe I titled this one wrong. Maybe it should be ‘The Things I Won’t Do for My Child.’