To say that I wasn't jealous of my friends would be a lie. To me it seemed the worse problem they had was how their child’s t-ball practice or dance practice took so much of their time. I wanted more than anything to find myself complaining about dirty baseball uniforms and muddy bathtubs.
I felt like none of my friends could relate to me, and honestly they couldn't. I’m not saying they didn't try but it was so hard to explain what my family went through on a daily basis. Taylor was adorable and won the heart of anyone he met so it was difficult to explain the sadness that I felt. Not because of Taylor but FOR Taylor. I wanted him to have the childhood other kids had and as a young mom just learning about this autism thing, I felt like he was being left behind. I felt like I was being left behind, too.
There is a loss that you feel when you first hear that your child has any kind of health problem. (I refuse to call Autism a mental illness!) I've said this before but when you are pregnant with that baby, there are so many things that you just take for granted are going to happen. You just assume your child will say "mama" and "dada"when they are supposed to. You expect to be sitting at peewee games. You joke with your spouse about how when your child gets older and starts dating you're gonna be a tough Mom and Dad! These are milestones that you just expect to happen and when it begins to sink in that this parenthood thing isn't going to go the way you always thought, there is a sense of mourning. In those early years, I didn't know that was what I was doing, but in my on again/off again depression, that's exactly what I was doing. I was mourning the life I had dreamed of for Taylor.
Listening to other kids who were Taylor's age carrying on conversations while I was still trying to get Taylor to use his words to tell me simple things, would get me choked up on occasion. Taylor had his good days and his bad days and it’s safe to say that the cycle was the same for me as well.
One day, my friend Ginny called me and was excited about something she had heard in class that day. She was studying Special Education and that afternoon they were discussing what it meant to be a parent of a child with Special Needs. Her professor read this poem to her class by Emily Perl Kingsley and Ginny couldn't wait to share it with me.
Welcome to Holland
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.
I had never heard this analogy before but I thought it was perfect. Ginny was excited because she felt that NOW she could understand our family situation a little better. I didn't write this poem down, my brain memorized it instantly and that’s saying a lot because I have terrible memorization skills. I remembered almost word for word because it was the truth and I grabbed onto it hard.
This poem expressed how I felt so beautifully. It was so hard for me to explain how much I loved Taylor for who he was, yet how sad I was because we didn't have the “Normal stuff”. Normal stuff like playing ball with his dad, having t-ball practice with the other four year old boys. Having a friend that he wanted to see all the time. We didn't have play dates unless I was visiting my friend that just happened to have a son his age. I wasn't hearing the cute phrases from him that my other mom friends would share with me about their children.
I wanted Taylor to “fit in” so badly. I admit part of that was pure selfishness because I wanted to “fit in” too. I wanted the ball sticker with his name on it on my back windshield, too. I was on the constant lookout for activities that Taylor could do. When Taylor was four, I signed him up for gymnastics. He loved to climb and tumble and I just thought this would be perfect for him. I was so excited for him and I couldn't wait for his first class.
The first day was a disaster! The children were in one room and the parents sat in an observation room so we could watch our kids practice through a glass window. While all the children sat quietly and listened to instructions from their coach (in the manner that four year olds do) Taylor was up within the first minute, walking around the room, doing his own thing.
Ten minutes into the first class, the coach makes eye contact with me through the window and motioned for me to come in there. I was crushed.
When I walked into the room she tells me quietly, “I need you to stay in here. I can’t instruct my kids with Taylor running around.” It felt like a stabbing pain. In just one sentence, Taylor was no longer one of her kids. I realize she probably wasn't even aware of how she said it but she was right, of course. Taylor was a disruption to her class and once again we were the odd ones out. I had to sit in every class with him and ended up working with him one-on-one as I tried to listen carefully to the coach’s directions and keep Taylor from running around the room.
Understand, this was hard work for me! I am not saying that Taylor listened much better to me, either. There were rules to follow but all he saw were a bunch of mats that he could climb on and jump and tumble. I was always exhausted and sweating by the end of the 30 minute class with Taylor having learned nothing from the gymnastics coach.
The moment that finally did me in was during his eighth class. Yes, I remember it well. We were all sitting down in row. Me sitting with six or seven, four-year olds and holding Taylor very tightly in my lap so that he wouldn't jump up and run off. I was still trying to make this work. I wanted so badly for this to be his thing. Taylor was squirming. He didn't like to sit still and was ready to get up and play. It was only 5 minutes into class and I was pouring sweat from trying to sit still with Taylor. Sitting next to me was the most adorable little girl. She looked at Taylor and then looked at me and said, “He doesn't listen very well, does he?”
I looked at her and said, “No baby, he doesn't but he’s trying.” I spent the next twenty-five minutes fighting back tears. The whole way home, I just sobbed, quietly though because I couldn't let Taylor see me cry. I wasn't crying because she said that. I was crying because she COULD say that, and Taylor couldn't. I was crying because I felt like a failure. I was crying because Taylor DIDN'T listen very well. I was crying because I couldn't sit in the observation room with all the other parents.
I was crying because I was in Holland and they were in Italy.
I want to tell you it's okay. If you are going through these very same feelings, you are not a bad mom or dad, you are human. It's when the sadness becomes all consuming that you need to take a step back and maybe talk to someone about it.
It was a bad day. They happen. Thank God 90% of our days are good. I promise, I will share those with you too.
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