Thursday, July 19, 2018

Welcome to "Holland"


Have you ever heard of the "Welcome to Holland" story? I had heard of it, but never read it until about a week ago. It is written by Emily Perl Kingsley, a mom to a son with special needs. It is not specific to Autism, it can apply to any disability. Here it is:

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks 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 some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy a new guidebook. 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, 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." The pain of that will never, ever, go away, because the loss of that dream is a 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.


Okay, let the story sink in a bit. When I was pregnant with Dominic, I was stressed out every single day. I had two miscarriages between Lauren and Dominic, so I was petrified that I would have another one. I went into labor about two weeks early (he was born on July 25, 2004)  and Dominic's birth was relatively uneventful, though the cord was wrapped around his neck a few times. I remember the doctor going, "don't push!" and she gently unwrapped it. Dominic cried a lot and didn't sleep much, but since it had been eight years since Lauren was born and Dominic was a boy, I just thought that's what they did. The time after his birth was a blur. My father-in-law was ill and we were traveling back and forth to Cleveland. He passed away in April 2015. Out of respect to my mother-in-law we let her stay in Cleveland, but we were traveling back and forth from Michigan. After a year, I told my husband we needed to move her near us (he is an only child). We then spent time cleaning out their house to get it ready for sale. During this whole time, my focus as far as Dominic was concerned was to make sure he got his diaper changed, nurse him and feed him. I truly didn't have the time to interact with him other than that. It wasn't until he was about 2 1/2 and the "dust" had settled a bit that my husband said, "hey, he doesn't seem to be talking." I was like, "he's fine, nothing's wrong." Well, we had him tested through our county's Early Intervention Program and he was diagnosed with "significant speech delays." Even then, the word Autism wasn't anywhere on my radar screen. It wasn't until I noticed other things like lining things up, hands on his ears and the no eye contact that I began to think to myself, could it be Autism? Sure enough, our pediatrician confirmed the diagnosis shortly after that and at three Dominic's psychiatrist diagnosed him with ADHD. Three years ago, we got the diagnosis of Epilepsy. I can only speak for myself, but did I wish he had Autism, ADHD and Epilepsy when he was born? Nope. But, you have this child who needs you. You will become stronger than you ever thought possible. You will meet people that you would have never met otherwise and some of them will change the course of your life. You may become lifelong friends. You become an advocate. Some days you are so exhausted physically, emotionally and mentally that you literally have nothing left to give your significant other or your other children and that will make you feel racked with guilt. It's not easy. It's okay once in a while to feel sorry for yourself and your situation. You wouldn't be human, otherwise. Just try to keep moving forward and don't look back or you will miss what is right in front of you. 


Presume Competence

Since we have traveled outside of the United States since Dominic was very small, we have had to get him a Children's Passport every fiv...