Tuesday, February 19, 2008

(Berkeley) California dreamin'

I lived in Berkeley for fifteen years, and if I could, I'd be living there still. There were so many things I loved about living in there - the blue sky and golden hills, the Asia/Pacific rim culture, the bookstores. But one of the things I liked the best about it, was that everywhere you went, there were people of all abilities and disabilities mixing together with ease and naturalness. There were quadriplegics in the cafes, paraplegics zipping down the sidewalks in their electric wheelchairs, deaf people and their sign interpreters in class with me. There was a Center for Independent Living in Berkely, that allowed every make and model of the human form to make lives for themselves there.

So now I live in a different city and I'm the mother of a special needs child. When i pick her up from her wonderful school each day, I get a bit of that Berkeley feeling. I see kids with flippers instead of arms, kids using walkers or wheelchairs, or kids like mine, who have all their body parts in functioning order, but whose neural pathways are mysteriously tangled. And in this zone of the school, it's a tiny Berkeley-like rainbow republic, where these kids are seen for the lovely, brave little beings that they are. My daughter's autistic hand flaps are just one aspect of her, and don't make the rest of her - her high-spirited giggles, her pretty brown eyes - disappear.

But once we drive out of the parking lot, it's a whole different world. All those other kids disappear, and it's just us - our weird rainbow-coalition family with kids that are differently colored as well as differently abled - out there. And people do stare or ask stupid questions. And there are days I get worn out being the shield and sword for my darling girl, and decide I just can't cope, so we stay home. But mostly we're out and about, getting in the world's face, saying 'We're here, and it's our world too." And I can tell that sometimes, People look on us with pity, and sometimes they hold their own typically developing kid a little closer in sudden gratitude that they're not like my sweetie. Which is fine, even great. Anything that makes people appreciate the gifts they have in their own lives, even if it's me and my special girl, is a good thing.

But here's what I'm wondering (and if any of you have first-hand knowledge, please share); are other families with special-needs kids, perhaps kids with more obvious physical disabilities than my kid has, choosing to stay home, or stay in safe zones? Is it just too tiring to go out and be constantly fending off rude stares? And if so, what would it take to get more of these kids out and about? Special hours at museums, pools, etc. for only special kids and their families? Because I do think that if we go out more, the world will get used to us more. How wonderful it would be if we could all make our own little corners of the world places, like my beloved Berkeley, where all forms and expressions of the human body, of human abilities, could live out in the open, under the sun, which shines on us all, and judges no one.


yellowdog granny said...

you are above all...a mother..and you do what mothers do for their children..protect and love..I wish our world was a better place and everyone was treated as equals..but that doesn't happen..here in west, texas we seem to have a larger amount of special needs kids..but let me tell you...they are enfolded in warm arms by the entire city..since so many are relatives or in laws or next door neighbors...they are like our own children..one of my favorite moments for my little town was about 2 years ago when we had our miss westfest contest..and one beautiful girl won...they talked about her grades, her druming abilities, her after school activities, her family and friends.and never once in the entire article did it mention that she was blind from birth..she was just our new miss westfest..maybe things like this happen all over..but i think in smaller town where you think of each other as more than friends...you treat everyone like their family....kisses to your beautiful daughter...js

Auld Hat said...

For the first 7 years of my life, my sister and I were basically raised in the same household as our youngest uncle (only a few years older than us) who has a severe form of Cerebral Palsy. He was so much like a big brother to us, that we just loved him up. And my gramps was always so good at answering peoples questions or better still, having my uncle answer them his damn self. Being out in public was more an effort to load his wheelchair into the car than of what reactions we might get. Although, I'd wager it was a lot more emotionally difficult for my grand-parents than they ever let on.

citizen jane said...

First of all -- you are amazing, Elizabeth. And a role model for me.

This was a beautiful post -- one that made me think and cry and think some more. I'm guilty of taking the easy way out and shielding Will more than I know I should -- sometimes it's just too tiring and sometimes my skin's just not tough enough. But honestly, he does better out doing standard issue things than I give him credit for. I could take a lesson from him.

You are so right in saying that if we go out more, the world will get used to us more. I'm going to take that to heart -- it most likely will be a one step forward, two steps back scenario at first, but practice makes perfect.

One step at a time -- for both me and Will.

Elizabeth said...

Granny: your town sounds wonderful! I guess that's one of the upsides of living in a small community - you're all part of each other's world.

Hat: Such a lovely story for me to hear. I worry, of course, about the future for my girl. I love that he was your adored "big brother." Thanks.

Citizen J: Oh sweetie, I'm just a struggling mom, like you. Far from perfect. I had a full depressive nervous breakdown when my daughter was first diagnosed. I've come a long way since then, but I don't want to make anyone feel that the choices they make are wrong. We all do the best we can, and I don't know what choices I would make if my kid had a more obvious physical disability. But mainly, the thing that matters is that you love your kid - however and where ever.

Also, I'm thinking about working with my daughter's school, trying to make disability-friendly zones, either by having the museums, etc. here have a special day for our kids, or having area businesses be designated as "friendly" and welcoming to us. What do you think? I'd love to hear.

D-Man said...

My beautiful nephew is autistic, and I haven't seen him in years. My brother and his wife are unable to constructively deal with many aspects of living with an autistic child. They withheld treatment for him for years. Anytime anyone mentioned the word autism my sister in-law would run around the house with her hands over her ears and then lock herself in her room.

Pat yourself on the back, dear - or I'll do it for you.

Elizabeth said...

d-man: So sad, for all of them, but especially your nephew. Though it is good for parents like Citizen Jane and myself to remember that, though we could always be doing better, we could also do a lot worse.

citizen jane said...

Oh, d-man, that breaks my heart. For your nephew, for not having the opportunity to maximize his potential and for his parents, for not being able to accept and enjoy who their beautiful son is.

It's tough, but as Elizabeth said, there's always someone in a tougher spot than we are.

Susan at One-Woman Show said...

Elizabeth, I have no experience in this area, but I would think that the museums in our area would be open to your idea -- especially considering that we have wonderful, established, child-focused institutions like the Children's Institute, Children's Hospital and others. A few years ago I saw that the zoo (or it might have been the Carnegie museums) had special days set aside for homeschooled children. Why wouldn't they set aside time for other children to see these same things, even if they might need special instruction or assistance? Definitely check it out. (And I don't want to be crass, but if people are willing to pay the entry/program fees, I can't see much argument from them.)

SubtleKnife said...

I was thinking about something similar recently. Thinking about my time at university, I only ever remember seeing one person in a wheelchair and maybe two blind people.

SubtleKnife said...

Hit send too quickly, what I was going to add is that I understand there are extra problems for people with physical disabilities, but those are in the practical sense, nothing to do with their academic potential.

Also, I remember as a child playing with a boy with Down's syndrome sometimes. But he went to a different school (I was only vaguely aware why) and he wasn't home to play with us that often.

mumbliss said...

Dear E,
Your feelings and struggles are familiar in so many ways even though the specifics are different. Being a mother, a good mother, stretches all our capabilities sometimes, leaving invisible stretch marks that only we can feel. We can't quit the job, even when we think that someone else might do it better. All I know it that your very blessed little people chose the right family.
As they say, "no operating instructions". You are really breaking new ground. You have my admiration and always my love and applause. It doesn't really help with the day to day struggles and choices, but add it to the love bead necklace that is wrapped around you. I think your idea of a day for differently abled people is a good one, but then again you don't have to do something on a grand scale to make a difference or stretch the world a little. Take care of yourself, we and they all need you. That is plenty to do right now. Sometimes allowing yourself to sit this dance out is just the right thing to do, but it is often very hard to give oneself permission. Love to your beautiful family.

(Sometimes, when I am feeling very frustrated, but not to the point where I have completely lost my sense of humor, I have crossed my arms and announced through my frowns to whichever rotton child I am being unreasonable to, with..." I'm not perfect, but I'M PERFECT FOR YOU." Sometimes I stomp off, and sometimes they do, but sometimes it helps.

Elizabeth said...

Subtle Knife: Because of the Center for Independent living, Berkeley was an amazing place, and University, in that way. As you so rightly point out, limited use of ones limbs, eyes, or ears, doesn't mean limited use of ones mind, though sadly, many assume mental disability when they see physical disability.

MumBliss: I get so many ideas that, now, when I announce to the husby, "Hey! I have an idea!" he automatically groans. So your point is well taken; I know that sometimes I should file them away for another day (or another person). I'll let this one bubble around in my mind for a while, and see where it goes. Thanks for being a link in the chain of love that makes all the struggles worth while.
Love you too. E

Jan said...

Dear Elizabeth,

Thank so much for letting me know about the blog! I have been working my way back from the present, to get a real sense of your history and what makes the Elizabeth I know now, so special to so many people!

My son, Ethan as you know has Asperger's Syndrome, a high-functioning type of autism, and he is 16 years-old. He was just diagnosed a few months ago, all the while knowing that his ADHD (inattentive type) diagnosis was only a part of what the real story. We took him to Children's Hospital here in Seattle for years, and they never came up with the diagnosis until my own research and the prodding of some his teachers made me dig further.

Ethan is an a public high school, and is on an IEP for the Asperger's, and motor apraxia( which mostly manifests through speech and a noticeable hand tremor). He does have some special services, and as a strong advocate, I have the school responding to his every need.

The problem is the cruelty of so many other kids his age. Ethan knows that he is different from "typical" kids, and he is not just intuitive, he really lives it..every day of his life. It is harder on him because he knows he is not accepted into the fold, but just tolerated at school. Kids like him well enough as a nice kid in the class, but is he invited to parties? No. Do girls give him phony phone numbers? Yes. He has all the "normal" desires and interests that other teenagers have, and that is the hardest part of the whole scenario!

He has developed a world of friends in cyberspace through his gaming at home. After his homework, I allow him this pleasure because it is his chance to have the friends he does not have in school...in cyberspace, he's on a level playing field! There are no kids to look at him as though he's different...he's equal in their eyes. When he's out in the "real" world, he is excluded by other teens, and naturally gravitates to adults. He is an only child, so he lives in an adult world, and feels safe and accepted.

Do people stare?...most certainly...are they obvious?...sometimes...the worst thing they do is just walk away from him as he's trying to verbally articulate something that they don't understand...I can't tell you the times I have felt like picking up a baseball bat and really nailing another human being for their cruelties...

I choose to shelter him from the hurt as often as I can, and let him have his freedom in a cyberspace world where he can write about music, laugh about Bush, and talk endlessly about the World of Warcraft. It's often times much healthier than making him get out and get some fresh air.

People often tell me that I may not be preparing him for the real world. The real world is so frightening sometimes, and even though he's 16, he really is emotionally much younger. It is such a paradox, because his IQ is very high,yet his production is doesn't match his intellect. It makes him appear like an under-achiever until you know the real story. I think slowly get him used to the real world out there will be difficult, and it is coming close to the time when he needs to acclimate...

Berkeley is sounding better and better to me all the time.

Elizabeth said...

Jan, First, thanks SO much for visiting the blog. As I told Stevie, in my note to him, I don't want either of you to feel that you have to read it, much less comment. But getting to know both of you has been a pleasure, and it just felt right to let you both know, in a wider way, who I am.

Also, I hope you know that I don't judge any parent who has a loving relationship with their child. (Those that don't, well that's another story...) Each of us knows best what our child needs and doesn't need to grow up straight and strong. My daughter is in a school for special-needs kids, a really loving and accepting place. If she had to go, every day, to a place that avoided/judged/hurt her, I know I would want the rest of her day to be completely swaddled in happiness and love. As you do with Ethan.

And, oh, Berkeley! It is such a wonderful place. I miss it so much, even now. And I'm willing to bet that there's no place that it's nicer to be a person with special needs.