Disabled?!?

I have been battling with my local community center over my Aspie (high-functioning autism) daughter attending the trampolining class for ‘normal’ kids her age even though they offer ones separately for the ‘disabled.’ PanKwake has been attending for about three months now and it was mostly fine.

Except for one mother and grandmother, who resent and complain about the one modification necessary for my child to access them…she is fixated on one specific trampoline. The other week they instigated a horrendous meltdown by putting their child on ‘her’ trampoline even though there were two others open. As a result there has been escalating issues (which hopefully are now solved…fingers crossed). The kicker…these people have ‘disabled’ children themselves…a girl with severe cerebral palsy and two boys who attend the same class that are also Aspie. Problem is that this woman demands my child attend that ‘disabled’ class. And I refuse.

Why? Because the greatest hope for my child is mainstreaming. Not the crappy stuff that schools do, where they force our Aspie square pegs to fit into the round holes of society. But true integration whereby my child is able to access as many activities as she can comfortably manage with some modifications. Equally though where the ‘normal’ children are taught understanding and compassion. Where being different is not frowned upon or some secret to be hidden but rather something to be celebrated…not just PanKwake’s differences but the other children’s as well. In other words…a place where acceptance and tolerance are the norm. In this way, PanKwake’s limits are pushed and she is challenged to be her best. And at the core, the next generation are taught values for the 21st century.

This is not to say that we do not support special disability classes. We utilize the Thursday night swim sessions for the disabled almost weekly. In that case, the swimming pool is simple to crowded, loud and chaotic for her to enjoy in a general swim session. These twice weekly ‘special needs’ sessions have only a couple dozen people and PanKwake benefits from the more relaxed set of rules. But it in no way offers the same quality of socialization. She virtually ignores most of the other people in the pool for one simple reason…

12009603_1642281972654190_8146444174564625368_nFor those with Asperger’s or high-functioning autism they have far more in common with ‘normal’ people than others lower on the autistic spectrum. And with some understanding and a modicum of accommodations all can benefit from an inclusive environment. PanKwake by learning and practicing those hard to understand social cues that will allow her to become all that she can be…and those ‘normal’ kids by having core values such as compassion, understanding and acceptance modelled for them. Values that apply not just to the disabled but to…race, religion, sexual orientation and a hundred other things.

Next Monday I will take this a bit deeper and explain why I think that it is not PanKwake who is ‘disabled’ but our society.

Tough Summer…

The one thing that even high-functioning autistic (Asperger’s) kids need is routine. Unfortunately, summer sucks for that. Nothing is the same for them. Their normal routines are shot. Even for homeschooled ones like PanKwake. Which, of course, means one thing…more meltdowns.

This summer was no exception between….

  • the brother, who teaches in China, visiting for a whole month, which meant not even the refuge of her home was the same….
  • friends, who attend school suddenly wanting to spend more time with her…
  • so many activities…
  • even the hot, sunny weather that was a blessed break from the normally gloom London rain, cool and fog.

It was all just a bit overwhelming. But we survived…and considering where PanKwake was a couple of years ago, I think we did remarkably well. Some days really stand out like…

  • going to a fete in a local park with one of her best friends…and NOT being the one who sent us into panic when she wandered off.
  • just  the fact that she has managed to keep not one but TWO friends for months now…who would have imagined such a thing a year or two ago?
  • REAL Wonder Womanheck, we went to Comic Con…can you believe it? Hundreds of people, mostly adults, all kinds of ‘things’ she wanted, bright florescent lights, and constant noise that sounded like a beehive! And she found her zone…playing Minecraft on a computer for the first time. We bought one stuffed toy and had to get a pizza for her afterwards…walked a bit to find the only kind she will eat of course. Oh, and had a bit of buggy trouble when elevators broke down. I really earned my Wonder Woman stripes that day.
  • but by far the BEST was going to Legoland with her brother, the day before he went back to China. All day…and it was a typical rainy British one…and not a meltdown out of her (brother had a couple of minor ones…not easy having a sibling with special needs, even when you are an adult).

So all in all…well done to PanKwake. Mommy is so proud of the young woman you are becoming. I can’t wait until next summer…think we will be up to an RV tour of America with your friends?

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.’

Great Expectations…

I saw this meme on my Facebook friends’ feed the other day and I knew there was a blog in there. It reminded me of something my older kids’ dad and I used to jokingly tell them when they got rowdy… “sit still and don’t learn anything.”

It says two...but the truth is that applies WELL past that age...especially to our Aspie/autistic kiddos.
It says two…but the truth is that applies WELL past that age…especially to our Aspie/autistic kiddos.

I want to say more, but I am not sure that I need to with this one. Other than two…ten…or sixteen…age is a number. We need to instead focus upon brain development and judge our children not against others of the same age but against where they were last month, last year or sometimes two or even five years ago. I believe that given time and that chance to learn through play they will get there. In their time and at their pace, PanKwake’s recent growth spurt in her development validate this assumption.

This message is especially appropriate now that summer is here. Kids are meant to be out and about. As much as mine loves her iPad, television and YouTube, I make sure that it is alternated with loads of running, jumping, swimming, ice skating, climbing and building. I went to a conference three or four years ago before we had the autism (Aspie) diagnosis. It was on epilepsy (her co-morbidity) and behaviors. One of the speakers, a doctor and researcher, gave the best advice I have ever heard…get them out and get them moving. He did not believe that any discipline method could truly work with these children. Instead he advocated proactive management of their behaviors by keeping them too worn out to act out. You know what…there is lots to be said for his methodology.

So this summer when your Aspie, autie, ADHD or just plain old ‘normal’ kid whines I’m bored, before things escalate to the point of no return…meltdowns or punishments…give’em something to do. Here are some of our free or cheap ideas…

  • Bubbles…keep them on hand or make them yourself with dish detergent and water.
  • Water balloon fights…form teams even…just be sure to pick up the broken balloons as they can be very bad for fish and marine life if they make it into the oceans.
  • Water guns…Super soakers, especially on a hot day.
  • Walks…in the woods, to the park, around the neighborhood.
  • Hide-n-seek…and this one teaches them counting too.
  • Tag…oh, boy do we know this one.

Get’em out, get’em movin’ and keep’em happy, tired and learnin’. Or that is my theory anyway.