Thursday, April 3, 2008

Shepherding Forward

I just watched the HBO presentation of Autism: The Musical. I hesitate to call it a documentary because it is so much more; it, like the people who star in it, can’t and shouldn’t be labeled.

As I watched I became especially attached to two of the children. One is a teenaged girl, a bit chubby, with a smile that slowly creeps across her face until she shines. There is something about her body language that made me think of younger me. The other child is an incredibly eloquent boy who spoke earnestly about bullies and about wanting a friend who “was never mean”. He lovingly spoke about one of the other children, clearly accepting his new friend for his annoying traits and “for the good things about him too”.

When I was in grammar school I spent some months in a Special Ed class. Because of my scoliosis I had balance problems and the school decided I should be in a “more protected environment”. The thing I didn’t know until I was older was that the protection was for them, not me. The teachers didn’t want to slow the entire class down because I had trouble with the stairs if there wasn’t a railing. The lunch room aides didn’t want to carry my tray or deal with me dropping it. I’m not sure what my parents thought or didn’t think about this change in my education. Remember – they were wolves.

I hated Special Ed. It meant I was retarded. That is all I remember hearing and it is all I remember feeling when I try to touch that 9 year old girl and get her to talk to me now. I don’t recall much of what the curriculum was. All the kids were thrown together so what I remember was a lot of chaos. There were wheelchairs and braces to crash into and fall over. Ironic isn’t it! There was one boy who would jump on me and try to bite my neck, all the time screaming about vampires. Clearly all “special” children were lumped together. In the HBO presentation one of the mothers spoke about all the autistic children being a tribe that needed the elders to come together in order to get them the rights they deserved. She likened it to the civil rights movement. So I tried to remember my grammar school special tribe. I tried to see faces and remember names. I tried to conjure up friendships. I tried to find me.

I became very quiet and detached in Special Ed. I don’t know if the move there brought on the change or just enhanced it. I do know that school had been a sanctuary for me before Special Ed. Every morning I got to leave crazy town and the wolves and I got to be somewhere where reading was a good thing, where the rooms were bright and clean and where I could imagine I was one of the regular kids. Even before the Not So Special Special Ed episode (as we now call it in family folklore) I knew I was different. I was from the only family where the Dad didn’t work, where the Mom never came outside. I lived in the house where the police were called at least once a week. This would work for me in later grades when I took on the sexy persona of the cool tough chick from the fucked up family. But that’s another story …

The grammar school girl was devastated that school had been ruined for her. Now she was with crazy people all the time. The kids were crazy, the teachers were crazy – I remember lots of yelling and lots of “everyone has to be still and be quiet”. This may have been where my caretaker persona really got all her experience. I remember unlocking wheelchairs and picking up crutches. I vividly recall sitting for hours on end wiping the mouth of a boy who slumped in his chair and drooled. I think he smiled at me once. There are no report cards from this period, there is no class picture. I don’t know if that’s because the wolves didn’t bother preserving them or if the Special Ed kids weren’t worthy of remembrances.

One of the parents in Autism: The Musical had a brilliant little meltdown about how the world didn’t value her child. She was my favorite parent, and by coincidence (or not) she is the Mom of the girl who reminds me of younger me.

This is not a sad post. I’m not depressed or angry or upset. I felt it worthwhile to share the memories and feelings that Autism: The Musical evoked in me. My time in Special Ed may be where I started to develop empathy and if it was then good, it was a great place for me to be. If my caretaker abilities where honed there, then good – it was a great place for me to be. If my ability to look at people and actually see them started there then good – it was a great place for me to be. It also makes me feel better about the world to know that we have come far since the days of throwing all the “special” kids into one class and hoping no one got hurt. We have so very far to go I know but sometimes the value of getting older is that you can remind people that moving forward is possible because you are living proof of it.

My favorite Mom in Autism: The Musical – the Mom of the remembered mini-me – said that “we can’t throw these kids away, someone has to be there to shepherd them forward”.

All through my life there were people who shepherded me forward and I like to think I now do the same. I like to think there are many shepherds among us.

You can see Autism: The Musical on HBO throughout the month of April and on HBO – On Demand. For more info check Here

I thought there was a way to view it online but that link doesn’t work at the moment.

I really recommend it. It is smart and real and earnest and endearing.

Thanks to a weird schedule at the giant-ass store and a feeble attempt to have a social life my wordzzle for Saturday will probably be posted late but I’m gonna do it. Don’t forget to check out this weeks words and give it a whirl.


KG said...

This was a really touching post. How sad that there is a "one size fits all" approach to education even with "normal" kids despite common knowledge that girls learn differently from boys, and that some learn visually while some learn orally.

It's sad. I know that educators in this country really try with the resources they have. It's hard for them to treat each individual differently and yet teach them all. But it's still sad.

Good for you for "making it!"

Jo said...

You have this incredible ability to choke me up & make me want to dance at the same time. I could be very angry over your Not-so-special experience, but your eloquence reminds me to see it as you do--here you are, so beautiful, the very particular result of the path you have walked, what you did with what you were given, what you were inspired to create. It all dazzles dazzle me.

Well, and I think you make a marvelous shepherd. You have the big stick-thingy, right?

I'm going to look for the Autism show...

Ramblings of a Villas Girl said...

Hi Dianne! When I was reading the part about your childhood, I felt really sad for you. But it sounds like this has molded you into a understanding compassionate person. Sometimes what at the time is a tough situation and why I am here? molds us into the people we are today. I think because of this we are better people. Lisa

fermicat said...

Everything I've read from fellow bloggers and what I have heard from people in real life has made me rethink my attitudes toward autism.

Casdok said...

Very touching post.
And it is an interesting musical. :)

Anonymous said...

great posts on autism, dianne. your sould just shines!

Anonymous said...

dear blog editor,
can you please fix the typo/spello in my comment above? sorry but my eyes were all blurry from reading it!

Dianne said...

law student ... - my experience was over 40 years ago. And it comforts me a bit to know we have come so far even if it has taken forever. I hope, with a new President perhaps, that we will pick up the pace.

jo - it's raining here this morning, until I read your comment of course.
I do have the big stick thingie - in many colors!

lisa - thanks. I don't feel much sadness anymore over most of my childhood, there are moments of course but as you say, it makes us who we are and we must move forward.

fermicat - rethining is always a good thing :)

casdock - means a lot to me that my post touched you, thank you.

LOL Cathy - blog editor is sleeping it off somewhere. I though "sould" was a brilliant invented word. Like a soiled soul perhaps?

tt said...

YOU are a good shephard. You're post reflect that. Empathy...that's my favorite word. I'm always striving for leaves me every once and a while but I usually get at least one visual reminder during my day. If there were more of it the world would be a much nicer place. I wish it were taught in school.
Interesting how if we allow our hearts to open up...the things we can learn throughout our lives is limitless.
You are our shiney girl!

Akelamalu said...

An interesting, if a little sad, post. I hate the way children are 'lumped' together but I suppose the education system doesn't allow for too much individualism. :(

Odat said...

Well, it looks like you turned out just fine, in spite of your Not So Special Special Ed!!!!!!

Dianne said...

tt - I get visual reminders too. that's why I was so touched by your post about the elderly man driving, he was your reminder and your post was mine.
and on we go ...

akelamalu - sad is OK especially if it opens a person's heart which it did for me. My school experience was 40+ years ago (Oy! I'm old) - much has improved.

thanks odat!

Shelly said...

Another truly amazing post.
Sadly, not much has changed. My autistic nephew (think Rainman) has a computer brain with an amazing way with numbers and calendars...but at the local school they had him folding washcloths. He's sixteen and his saint mother found a wonderful place for him two hours away. She misses him terribly but she says it's best for him, he's in a place where they really care about him and he's learning.

Jeni said...

Your post and the above comments have done something that many who know me would say is impossible to do - left me relatively speechless!
You said it all so well and everyone else said just about everything I was thinking too so for me to put in more than a pure and simple "Thank you" would be redundant and also, quite trite and boring. See what I mean about still not being quite speechless but darned near!

Raven said...

sheparding forward - what a good phrase... This is a wonderful and moving piece as always. My brain is on strike this morning so that's all the comment I can cough out...

Looking forward to your wordzzle. Hope the giant-ass store and it's patrons treat you well tomorrow.

Dianne said...

shelly - I'm sorry your nephew has to be far away from home to get the education he deserves. In the HBO presentation one of the Moms talked about the school expected nothing for her child but to push a broom - that hurt me to hear.

jeni - thank me? wow! I'm so humbled by how many people are all networking and learning and sharing from each other.

Dianne said...

raven - I hate when my brain is on strike. It really has impossible demands and I just can't deliver on all of them!
I'm going to a party tonight and then the store early tomorrow. This will be a test of my stamina LOL

pink dogwood said...

"This is not a sad post. I’m not depressed or angry or upset"

I still feel like coming over and giving you a hug - here is a virtual one for you:


Kerry said...

I know you said this wasn't a sad post, but it still made me sad. Something similar happened to my brother because he had mild epilepsy - he was stuck in the Special Ed system the whole time he was in school, until his last two years of high school, and ended up developing more problems (of the behavioral sort) because he was being treated like he had no intelligence. When a "normal" child acts out because they're understimulated academically, they'll move him forward a grade. When a "special" child acts out, they send him to a different school so they don't have to deal with him anymore.
Well anyway...I think it's awesome that you have such an amazing attitude about it. You continue to inspire me.

bobbie said...

Your ability to gain so much good from an experience like that is typical of you - as I have come to know you since I began blogging in January. You are, indeed, a good shepherd.

Dianne said...

pink dogwood - a hug is always good and always welcome.

kerry - thanks for the kind words. sorry about your brother's experiences, it's so unfair.

bobbie - "a good shepherd" - thank you, I try.

Minnesotablue said...

Dianne: You know about my grandson. He has been in special ed from his first years in school. He to has always had a special empathy for folks less fortunate than him. He's always the first to offer help, defend other when needed and he told me that even if others teased him about being in Special Ed he knew that he did need special help.I know that it would have been better if he hadn't needed the helpbut in his case it has made him a kinder more loving person

Linda Murphy said...

Wow-that is quite a post. And I think you are amazing-and look how many people you are affecting by your experiences and words. Myself included.

I have to check out Autism the Musical. I'll do that this weekend.

Dianne said...

minnesotablue - your grandson sounds like a wonderful person but of course he would be, look at the people he has around him.

snoopmurph - thank you! I decided a long time ago to just be all the parts of me. My sister struggled for years to pull of an image that denied our childhood and it was her undoing (is that a word!?) - one of my brothers turned into a plastic replica of a person trying the same stunt. I chose the path of this is all of me and I won't hide or apologize. I'll just be. I used to think that was a mistake but as I get older I think it's the smartest decision I ever made.

CG said...

You are a very remarkable woman. There is never an iota of self pity in anything you write.

Sparkling Red said...

You have overcome so much, and your attitude is so positive! I loved reading this post - it's inspirational, and I've been in a mood today that needed some inspiration. So, Thank You! :-)

Dianne said...

cg - used to be the Queen of the Pity Party circuit but it got old and it never helped or changed anything. although I do find myself having a wee party every now and then, just for old time's sake ;)

sparkling red - wow, thank you. I love that I could write something that would lift your mood. thank you so much for telling me that.

Anonymous said...

--wish to share these lines with u ma'm[they refer to autism]--

Expression in slow motion..

Many lilies and hollyhocks
gerberas and chrysanthymums
scents of muffled up fancies flowed
musky wishful imaginings,flowered

and blossomed in the enclosures
of my mind.
A canopy of reason
to escape the acid rain

A hedge of hawthorn,
to resist being trampled upon
and that done,
a good ol' garden gate,

which however,
those tresspassing thoughts
to mingle and congregate.

my hedge of hawthorn,
took a long long while
to find its full expression,

joked someone
is it autistic,
artistic,may be!
and yet i got drawn

to a moment, bygone
when a crown, the Christ had worn
of the thorns of hawthorn !../original/z.g/