November 19, 2009

Life in Holland

I am a serious researcher. I always have been. Term papers were never a problem for me because I get obsessed to the point of madness when I want to learn about something. So when we learned about Noah's sensory processing disorder, I threw myself into researching and learning everything I could. But no matter how much research you do, nothing can prepared you for what it feels like to have a child with special needs. It feels hard. It feels like sometimes your heart is being ripped out of your chest. It feels like sometimes you want to find the nearest heavy object and throw it. It feels like you live on a different planet. And sometimes, it feels amazing and rewarding and feels like how parenting is supposed to feel. (For previous posts about Noah's SPD click HERE.) Noah is finally coming down off of a crazy, 10 day, out-of-whack, drive your mama crazy period. He seriously can not control the volume of his voice and the sound of him in the past week has just about made me blow my stack. He also decided around this same time that he can only tolerate sweatpants and pajamas. He absolutely will not tolerate underwear or jeans or turtlenecks or just about any other article of clothing. It makes him scream bloody murder. I felt like the biggest BI@*H when I was giving instructions to people who wanted to buy him clothes for his birthday. "No denim. Only fleece or jersey material. And it can't have elastic bands on the bottom of the legs, etc. etc." I realize that it makes me sound like a crazy, pushy mom, but I have to do what I think is best for my son. Yesterday he informed me, as he strutted naked all day, that he had "quit his clothes." And yet, I realize that because SPD is so misunderstood, many people look at Noah's crazy behaviors and quirks and think that he is this way because of a lack of "good parenting" or that we "just need to make him do what we want him to do." Believe me- if it was that easy, I would have done it by now! It is sometimes really hard for me to not get mad at him for things that he can not control. I know that Noah would not choose to be "different" if he could help it. But at times, I still lose it. I find myself wondering what our lives would be like without all the yelling and the meltdowns and the fights about putting on coats and clothes. Then I ran into a story that helped me put it into perspective. I saw this on another blog that I love ( and I wanted to repost it because it just helped me tremendously to read it. I think that this story is so applicable to just about anyone who is a parent of a child who has any kind of special needs- be it RAD, SPD, ADHD, PTSD, cancer, diabetes or any other kind of thing that makes our kids unique. Because, even though it's a lot of work and it's a lot different than I anticipated, I've come to LOVE living in 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.

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