Wednesday, May 31, 2006

Notice This

“We don’t notice your CP Emma”

“When you’re sat on a regular chair you can’t tell that you’re disabled.”

I prayed and I prayed that my CP you would miss. It seems my prayer was answered. But now I wish it wasn’t.

I am Emma, not CP, but CP still affects me. My Prayer has changed, now I Pray that you will realise this.

What if I said this to you? I organised a trip and I’m sorry but I forget to check before I booked, and it turns out (surprise, surprise) that the boat can’t handle peole who don’t have disabilities. Wheelchairs yes, any sort. Sticks, walkers, mental impairments, mentally ill, hearing disabilities, visual impaired, all welcome. Able-bodied, *sharp intake of breath* no, love i’m sorry we don’t cater for them, no demand you see and the boat is listed - historical artefact can’t be adapted oh and really we just can’t be arsed to do it. The able-bodied just cannot go.

No, a lie they can go if they wish. But they must sit in a corner no bigger than [this] be seen and not heard but not really seen, have no drinks, no eats, no safety from the rain. You can’t get the loo well why did you think you would be able to, don’t you dare complain.

Basically that is what you’ve implied and said to me. If I said that to you it just wouldn’t do. Your shock and disappointment would be something everyone knew. As for me? I am disappointed but I’m not shocked. Somethings never change and so I miss out once again.

I'm an important part of the "team" at work I'm told but somehow you don't act like it. You tell me you wish I could go, that it’ll “Be Ok”. You tell me not to worry about it. But how can I not? Those steps may be only three, they may as well be thirty or three hundred, a step is a step. And that’s not wheelchair access. Oh how I love that concept “We have wheelchair access but three steps into the bar/restaurant/lounge/toilets” it’s not wheelchair access, it’s a barrier to me.

You can go and I can not. I briefly envy you then it comes to me that it’s not worth my grief. I could go if I were like you. But that would mean I didn’t have CP. And if I didn’t have CP, I wouldn’t be ME.

And if that’s what I must be to go, then quite frankly I’d rather not.

Friday, May 19, 2006

building a community for my boy, step one – moms at the school

I am struggling to build a community for my little boy.

It amazes me how scared adults are of a three year old who is 31 inches tall and has the face of an angel.

I went to school to pick up my older daughter. Aaron toddled along beside me, happy to be out to step on cracks in the sidewalk and dig his toes in the playground sand.

The group of mothers standing by the door parted as we approached. Grown women look away, lest they make eye contact with me.

I know they don’t know what to say to me. They are terrified to speak to me because I am a strange creature. I am the mom of a child with a disability.
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I want to tell them that Down syndrome is not contagious. If they dare talk to me, they will not immediately become pregnant with a baby with a disability. I want to tell them that I’m just a regular ole mom, with a bit extra on the side.

My regular mom stuff includes helping with homework, shuttling kids to the mall, making dinners, and doing laundry. My extra mom stuff includes hosting a parade of therapists in my home, sitting on a support group board, taking Aaron to many medical and therapy appointments, and laying awake at night worried sick about his future health and how society will treat him.

Because at only three years old, I am getting glimmers of Aaron’s future. People scared of him because he’s different.

And that breaks my heart right in half.

How do I handle this without becoming neurotic, paranoid or resentful? Am I unconsciously telling people how to treat Aaron…to look away when we approach? Am I so cloaked with concern for him that I push people away?

Only three years into having a child with Down syndrome, I’m finding my way around this new world. Having a 12 year old and a 9 year old, I thought I had this motherhood thing pretty much figured out. But Aaron adds a layer of complexity that puzzles me. I am no longer like the other moms standing in the playground.

When we talk about integration for Aaron, I think I need to be integrated, too. Other moms need to spend time with me to discover I’m not that much different than they are.

Don’t be afraid of us, I want to say. We won’t hurt you.

Thursday, May 18, 2006

One Half Turn at A Time

I used to do whatever I could just to make my daughter Zoe grin, to hear her laugh. I wanted to erase the hurt of her hospital stays and make the disappointment of her disabilities go away. Until one day we were at a birthday party, and I stood watching Zoe's beaming face as she claimed her prize. She was squealing with excitement as I watched the birthday girl's mother hand Zoe a second "extra" prize. Curious, I moved closer to see the Mom's face and felt the slap of shock as I realized that her face was full of pity.
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Being outside that day had felt great. Zoe was having fun. She was managing her walker independently, and although I was close by her side, she was no different from all of the other little four –year- old girls madly running around the backyard. There I was celebrating Zoe's progress and independence as another woman was mourning Zoe's disabilities.

And that look on her face just wouldn't leave me. It stayed with me like a huge undone task on the top of my to- do list, a few weeks later we celebrated Zoe's birthday. And there were these presents, from our friends, big bags of Disney delight, over the top gifts for your everyday four- year- old birthday. But then again, this was a four- year- old with speech problems, muscle problems, kidney problems, brain abnormalities, a four- year- old who has physical and cognitive disabilities.

That night lying in bed, I thought about the different friends I have who like to praise me for my patience, for simply doing my job, for being Zoe's mother. Were they feeling sorry for me or offering support?

My journey as her mom, in these four short years has been long. When Zoe was a baby, I had more questions than answers. Back then, I wanted other people to see she was different; I wanted them to acknowledge and confirm what I alone saw., what my mothers instinct was telling me.

When Zoe was two, she was diagnosed with a mitochondrial disorder, a complex metabolic disease, and we faced the challenge of managing a progressive disease with no real prognosis. Her delays became more obvious as she began to walk with the use of a walker. She smiled a lot and would attract attention when we went out. I appreciated those kind words, the smiles and waves from strangers. even the "she's so cute" comments. I was still hurting, still grieving. The extra attention was soothing then, like a cool salve on an open wound.

But Zoe soon grew into the little girl she is today, and professionals began to document her "delays" as disabilities. I was the mother of a child with disabilities. A child I wanted to empower and not restrain with limitations; a child smart enough to someday realize that she is being treated differently from her peers, a child smart enough to perceive pity.

I have learned to manage Zoe's calendar of therapy appointments and doctor visits, to allow her time to play Barbie and beauty salon with her sister. I have learned to prepare for Zoe's annual Individual Educational Plan, making long lists of what she can do, to balance the many paragraphs that outline her needs. I have learned where the access parking is available at the local mall , and which parks have rubberized ground cover near their play equipment, so Zoe can navigate her walker as close to the other children as possible. I find myself acknowledging my child's disabilities so that we can utilize resources that will help her to experience normal, everyday life.

And within Zoe's world, I want the emphasis to be on her abilities, not her limitations. I want her to be treated just like any other little girl, without excessive praise or attention. I want to teach Zoe that she can make her own choices and live her life in the most independent way possible. I want to teach her she can do anything, and that isn't always easy, even for me. Last weekend our family went out for dinner. After we ordered our food, Olivia, Zoe's five-year-old big sister, asked to use the bathroom. I immediately took her, completed the task quickly, and we returned to the table. Zoe, still in diapers, greeted me with, "Bathroom, please, Mama?" The restroom was located in the far corner of the restaurant across a large and very full dining room. I hesitated for a second before replying, "Let's go, Zoe!" and off we went. In that second, anxious for dinner, I was dreading the trek through the busy restaurant.

Sometimes though, teaching Zoe she can do anything is completely natural, and I want others to see how easily she can find her own way, like when she plays dance party with Olivia. There they were the other day, dressed in matching dance outfits, feather boas and princess crowns. I watched them dance side by side across the tile on our family- room floor. Zoe, rocking her shoulders back and forth, back and forth to the beat, while Olivia sang, shimmied and twirled around her. And then ,Zoe singing along to the same music, began to spin her walker on the floor, twirling effortlessly, just like her sister, doing it her way, one- half turn at a time.

Submitted by Suzanne,