Thursday, May 6, 2010

What happens when the child you're given isn't the child you expected?

Recently, sister H's daughter, baby C, was diagnosed with autism. She's just 19 months old, which is very young for a diagnosis and that's encouraging.

Most of the autistic children I've met have what they call a "regressive" form of the condition. Everything seems perfectly as it should be, with baby reaching milestones on or before "schedule", and then sometime between 15 months and two years the child begins losing previously mastered skills and milestones.

This is not baby C. For us, her family, it was very obvious almost from birth that something wasn't quite right. Sister H was blind to it, but my mother, other sisters and I could see. She never looked at you. It always seemed as though she lived in a the rest of us. She used her feet as most children would use their hands and could sit for hours opening and closing a drawer. She just began walking at 17 months and spins in circles frequently, and still isn't speaking beyond the babbling you hear in a 6-7 month old baby.

As I said, we could all see that baby C needed help, but we were afraid of insulting sister H. No matter how gently you suggest something like that, what most mothers would hear you say is, "your kid's messed up." Thankfully, sister A sees the same pediatrician as sister H, so she mentioned our concerns to the doctor, and the doctor (who also has an autistic child) brought up the subject with sister H at baby C's 18 month well-child visit.

The diagnosis hit sister H very hard. She became deflated, a shell of her normal self. It was so hard to watch. Surely she must have suspected something before, but to be confronted with it finally...

She's very sensitive in general, but even more so about baby C now. It's hard to talk to her about anything related to C's autism. There's so much I want to tell her. I want to tell her that we all love baby C to death, if not as much then even more than before. I want to tell her that every mother experiences the "death" of the baby she'd imagined. The baby birthed from a woman's womb is never the baby she conceived in her mind. For some of us, the differences are minor but for some they're dramatic. I want to tell her that baby C is precious in the eyes of the Lord and that she is "beautifully and wonderfully made," just as we all are. I want give her my whole body for support; arms to wrap around them both, shoulders to cry on, ears to listen, mouth to speak encouragement, eyes to view every victory and feet that are swift to run to her side.


Kate said...

Before I had my son I spent 6 years working with special needs children, primarily ones on the spectrum. A parent once shared this with me; maybe it will help your sister.

by Emily Perl Kingsley.

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.

c1987 by Emily Perl Kingsley.

Kate said...

I'm leaving this as a separate comment because I didn't want it to get lost.

It's ok for your sister to grieve but it's important that she stays strong. She needs to be a mama bear and fight for the services and therapies her daughter needs. I know that your niece is very young but early intervention is critical and it can take months (if not years) to get these things going. The good news is that there is a large community of parents out there who are ready and waiting to help guide her through the system; she doesn't have to go it alone.

Everyday Song said...

Wow. Interesting post. My sister just had her 4th baby at 3AM this morning. I think that news would rock her world. Great topic.

Juenna said...

You're just one of the chosen few to be given a special blessing. You'll do fine. By the way, this home protection devices for women like us might interest you. Thanks and more power!