Friday, October 5, 2012

Guest Post: On Raising a Special Needs Child - "Welcome to Holland"

For this second in what I plan to be a series of guest posts, Aysha Tapp writes about the challenges and triumphs she faces in raising her son, who has cerebral palsy. It is hard for those of us with "typical" or "normal" children to understand what it's like to know that your child isn't going to develop along the same timeline as your friends' kids. Aysha describes the highs and lows of parenting a child with disabilities and shares a poem at the end that she feels best expresses how her life has changed since the birth of her son.

Raising a child with a disability is one of the most difficult and most rewarding things a person can ever go through. 

My son is two and has cerebral palsy. He got stuck during birth and lost oxygen. After what seemed like forever, but was probably only 2-3 minutes, the midwives had broken his clavicle and pulled him out. He wasn’t breathing, was a whitish-purple, and had a very weak heartbeat. For the first thirty minutes we did not know if he was even alive. After two days, we were told that, on a scale of 1 to 10, where 1 was completely normal and 10 was in a wheelchair unable to eat or speak, he would be an 8. We were devastated. We had spent nine months preparing to have this perfectly healthy baby boy. My husband dreamed of playing baseball and soccer with him; I dreamed of helping him with his first steps and playing with all of his other friends. All of those dreams came crashing to a halt in a matter of minutes. We felt so alone and devastated. We had friends tell us that “all babies develop on their own time scale,” and it frustrated us. I wanted to scream, “How can you say that?  How can you possibly understand?” It became a white elephant in the room isolating us from our friends, and we knew they were tired of us talking about it. Since then we have worked very hard, through therapies and surgeries, to get him to be able to do the things we were told he would never do. He started eating when he was 2 months, started pulling himself up at 2 years, and can say two or three words as well as saying about 10 in sign language. 

He is still nowhere near “normal” though. We had to get a handicapped sticker for our car because, even though he is only two, and a lot of other parents carry their two-year-olds, he cannot stand or sit on his own, and there IS NO putting him down while I do something else. We had to get a handicapped stroller for him, which looks like a wheelchair but without the giant wheels. As happy we all are that he has it, it’s still one more thing that makes us different, and it’s one more piece of hope gone.

The hardest thing to deal with is the obviousness of his disability as he gets older. When he was a year old it wasn’t so unusual that he wasn't walking yet. At two years, it feels pretty bad. He gets really frustrated when we are around other kids because he wants to be doing the things they are doing, but he can’t. He can’t play on a playground or slide down a slide without my help. He can’t get on a riding toy, or off a riding toy, or continuously on and off a riding toy, without my help. I have to be there for him in order for him to play with anything that isn’t on the floor. It is frustrating for him and frustrating for us as parents.

One of the awesome things is what the brain does in a situation like this. When faced with an injury where parts of the brain are severely damaged, the brain overcompensates in other areas. He is smart - like, really smart. He is testing cognitively as a three year old while his motor skills are stuck at 12 months or less. For example: He figured out how those singing greeting cards work after he intentionally took one apart (he was 16 months at the time). That was annoying. His brain is working to figure things out, but his hands and body won’t do what he wants them to do. He. Gets. So. MAD. So mad. A lot. As his mother, I am not sure how to help him. I don’t want to overcompensate by doing things for him, but at the same time I still want to help him. Where is that line, and have we already crossed it?

As difficult as it can be, I honestly believe people who do not have the experience of having handicapped children are missing something special. They don’t know what it’s like, on top of everything else a normal person does in a day, to go through hours of therapy every day so your child can do a simple task. You learn to celebrate the little things that most children breeze through. When our son drank from a straw for the first time we cheered and just about threw a party!! After three months of intensive therapy, bribing him with milkshakes and other yummy treats, he finally got it, and we could move on to the next thing. It was so beautiful! We have a bottle of champagne set aside for the day he walks on his own, which we probably won’t be opening for a few years, but I know it will happen someday. We have to know he will, because we can’t show him how to doubt.

It’s not easy having a disabled child. You break down, you feel hopeless, you blame yourself, and you isolate yourself from your friends. You get inducted into a new group of people who are thrown together through unfortunate events. When A was first born, someone I knew sent me a poem. It’s the best way I have found for describing what it feels like to be a parent of a disabled child. It still makes me cry. I'd like to share it with you.

Welcome to Holland
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.

If you would like to write a guest post for Jessica on Babies, please email Jessica at jshaham (at) gmail (dot) com with your topic. See this post for subjects we'd especially like to see covered and for additional information on guest posting. You retain all rights to your article and may repost or re-publish in other venues if you desire. Posts will be proofread and edited only for minor grammatical and spelling errors or for clarity.

1 comment:

  1. What a beautiful writing from a beautiful caring mother.....Surely going to Holland makes us appreciate Holland and what Holland can offer....
    Thank you for sharing your thoughts.