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Sunday, September 28, 2008

Raising Amy

The nomination of Governor Sarah Palin has, to some extent, spotlighted the lives of parents of offspring with Special Needs. Certainly most of those parents do not have the luxury of handing over the care and rearing of their Special Needs child to nannies and caregivers, nor would most of us want to.

I say us because I am the mother of a 37 year old daughter with Down’s Syndrome, the Cadillac of disabilities. I have been blessed. My Amy does not suffer with any of the medical problems that sometimes are part of the package of Down’s Syndrome such as a bad heart. She is funny, loving, artistic and my best friend. She has her step-father wrapped around her little finger and is the delight of her niece and nephew.

When a baby is born with Special Needs, friends and family don’t know what to say or how to behave. Frequently what should be an occasion of joy turns into grief and mourning. Certainly there is grief for the child parents spent nine months anticipating. That baby didn’t arrive. That baby was a dream they dreamt which will swim to the surface of memory from time to time as they get older, but the birth of each flesh and blood child should be celebrated and friends and family, instead of dabbing their eyes or pulling away, can help the parents by creating a cocoon of love and acceptance.

When my daughter was born she was not diagnosed immediately. Her father and I had six days to fall in love with her and I’ve always considered that a blessing. That diagnosis changed everything and nothing. She was still a baby and a very good baby. I remember that the wives of some of my father’s Flight Test buddies came to our apartment to pay a visit. I wasn’t sure if they’d come to condole or to celebrate. It was very uncomfortable. At the time it angered me, but looking back from the vantage of 37 years I am mature enough to realize that they were doing the best they could. Perhaps the notoriety of Trig Palin will change how people handle the birth of all babies.

I cannot speak to disabilities beyond Down’s Syndrome and even at that each child is unique. I have worked with students with a wide range of challenges and found things to love in each of them. Some of those students stretch parents emotionally, physically and financially. That is why the love and understanding of those who love the parents is so important.

In 1987 Emily Kingsley wrote a moving account about what it is like to have a Down’s Syndrome baby. It is easy to substitute any disability for Down’s Syndrome. It so captures my own experience that I share it here.

"Welcome to Holland"
By Emily Perl Kingsley, 1987.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


Mizu Sugimura said...

If the writing in this piece was a mountain top - you have just placed your flag atop Mt. Everest.

Stephanie Frieze said...

If I can help parents, grandparents or friends to view people with Special Needs as human beings instead of a problem, then it will have been worth the climb.

When Amy was tiny we were a part of an Down's Syndrome Infant Stimulation Group at the UW's Child Education Unit. A meeting with parents of older Down Syndrome children was arranged and I will always remember two things that one mother told us. First of all she said, "Right now you may be seeing your baby as a problem, but pretty soon you're going to see them just as a baby." The second things she said was, "You don't know it yet, but you're lucky. You've got the Cadillac of disabilities." I don't think we ever saw Amy as a problem and I never have although her biological father came to feel differently. After 20 yeras of working in Sped I believe that mom's second remark to be true.

VW said...

We have a 15-year-old autistic boy. Many people don't know how to take him or what to say. He's a great kid, very innocent still, but his nieces think he's the bomb!

Great post!


Stephanie Frieze said...

VW, you have my esteem and love for sticking around and being a dad. I know dads, especially dads of Special Needs sons, who couldn’t handle it. I no longer know the statistics, but at one time the estimate of the divorce rate among parents of Special Needs children was 90% so you’ve outstripped the odds. I know many intact families and even though Amy’s dad and I are divorced, I like to think of our family as being fairly intact, but there are lots of moms hoeing the row alone.

Some of the coolest students I’ve worked with have had Autism. Not always, but frequently God seems to compensate people with Autism, especially the boys, with beauty. I’ll bet your son is beautiful.

Lorraine Hart said...

Wonderful post Stephanie!

It's strong families that survive the struggle...any struggle...and the gifts inside the struggle are like no other gifts in this lifetime.

Wherever we wake-up, that's where we are...and the adventure of the day waits in the world.

I cheer Sen. Obama's feminism, when he calls for men to be more present in their homes and families.

JosephMcG said...

Thank you for your wonderful reflection...


Stephanie Frieze said...

It used to be that people like my daughter were institutionalized. Even as recently as when she was born doctors frequently advised parents not to take a baby with Down's Syndrome home from the hospital. We met people who'd had that experience and ignored it. As a country we've made great strides in keeping children with their families and are among the most enlightened of country
ies in that regard, but we still have a way to go in educating the general public in how to treat Special Needs individuals and how to support their families.