Holland Vs. Italy

When Taylor started pre-school, the differences between Taylor and his friends became more and more evident.  To add to it, the things that I had in common with my friends became less and less. I went through many times of mild depression and heartache because I felt that Taylor, Mike and I were being left out of so much.

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.

What's Next?

When I started this blog a few months ago, my goal was to post at least once a week. I had a simple plan. The posts would vary in subject but all relate to each other in the matter of things that I have learned (so far) as parent of a child with autism.

 I started the blog by going all the way back to where it all began, when Taylor was born. I think I even stated that I would be making posts in no particular order. I have to admit though, I am a bit OCD and I love to read a story in the order of events. That being the case, I have found that I will get stuck on what to write about because, well, Taylor is eighteen years old and I have so much to talk about! 

Sometimes though, I procrastinate because I end up talking myself out of a post, wondering to myself, “Will this be relevant?”, “Would this post be helpful to someone?” “Will anyone even read this?”

I do feel that if my blog helps one person, that is enough but I have discovered that on some days, that one person just may be me.

So, once again I have been stuck, looking at my laptop, procrastinating each day. Making up one excuse or another to not have time to post that day. This time is different though. It is not because I don’t know what to write about, but because I do know, and it scares the hell out of me.

You see, Taylor is about to graduate from high school in May. Let me first start by telling you how incredibly proud I am of this kid! Taylor is getting the Standard Academic Diploma and I really don’t know if I can explain how freaking hard he has worked to earn this diploma. It’s been a tough twelve years.

My husband and I have spent the last seventeen years focusing on helping Taylor be the best that he can be. School, obviously was a huge focus along with speech therapy, social skills groups and lets not forget MATH. (Not all people with autism are good at math!) Teaching him how to study and how to take tests? I got that! Taking him to speech therapy several days a week when he was younger? I got that, too! These things were just life and we did okay. We all worked hard and we made sure we had fun, too.

So why am I scared?? 

Everything is about to change for me, my husband and Taylor and maybe for my younger two boys.

I have spent a large portion of my life as the mom of a child with autism. I accepted it. I embraced it. This is our life and we will enjoy every moment of it… but now I am about to be the mom of an ADULT with autism. This is incredibly scary to me and even now I am struggling with words as I fight back tears.

What happens now? All these years I have focused on the "here and now" but with that was also the thought deep in the back of my mind, “what happens to Taylor when we are gone?”

Being the parent of an adult with autism makes me very aware of how much closer my husband and I are to not being in this world with our kids. I know that is a morbid thought, and no, I am not dying, but it would be irresponsible to not think about Taylor’s future without my husband and myself. This is reality.

What happens? Will he be okay? Did we do everything right?

When Taylor was little, I would think “What happens if something were to happen to Mike and me?” This thought drove me to teach Taylor how to wash his own hair and bathing himself when he was five years old. He was making his own bed and cleaning his room on a daily basis at the age of six. When he was ten, we taught him how to wash dishes, cut grass, separate his own clothes for me to wash, make his own sandwich. Things that were just chores and everyday things for other kids, were huge accomplishments for Taylor.

I can say with confidence that Taylor can take care of himself to a large degree. That kid is probably the cleanest boy I know. It’s a routine for him. If the green light is on the dishwasher, he empties it…sometimes to detriment of being late or getting homework done. “Green light” means “empty dishwasher”. (Don’t ask him to load it though, he will quickly tell you that is Jordan’s job!) He knows garbage day is on Tuesdays. If we forget to gather the trash, he has been known to wake up at midnight and put the trash out.

If he comes downstairs and sees that my husband and I are watching a movie, he will make us popcorn, regardless of if we want it or not. He doesn't ask us but we always accept our popcorn and thank him every time. “Movie” means “popcorn” and he just showed us he cares.

Routines.
Specific jobs.
Schedules.
Rules.

Taylor can handle all of this, but what’s next?

Everyone keeps asking me.

“What is Taylor going to do after high school?” “What will he do now?”

It’s a legitimate question and really, I don't mind the question but it brings to light that not many people know what happens next for these kids as they move on into the adult world. We do have plan for the next year, but after that? I don’t know. That’s another scary part.

Next year, we are hoping he gets into this program called “Project Search”. It starts in August and goes through May, so it’s like a school year. We have explained it to Taylor that this will be kind of like his college. This program is specifically designed for older kids with special needs who are coming out of the school system. It’s like a vocational college where they will help Taylor discover what jobs he is best at (my guess is something with animals) and he will learn how to work with employers and employees. 

It’s a start but these past few months have made it very clear to me of this need in the Autism Community. These kids are smart. They have goals. They have dreams and they deserve a chance to be involved with their own future. To have a say in what happens in their lives, not just sit in a room watching videos on YouTube all day. That’s not a future I want for Taylor and I know he doesn't want that either, but he needs us to help him find his way.

Taylor WANTS to go college…I believe he will! He is just not ready quite yet to be away from us and to take on the workload that college classes require and I am not going to set him up for failure. If you ask Taylor what he is going to do after high school, he will respond without hesitation, "Work with horses."

My big dream for Taylor is that he finds a job on a farm working with his favorite animal, horses. I dream that he meets a sweet girl and they fall in love.

If Taylor lives with us for the rest of our lives, we are prepared for that, but Mike and  I are not going to assume that is his future. I believe with all my heart that he is going to make a difference in this world.

Every year, I schedule a meeting his teachers  at the beginning of the school year so that I can introduce myself and tell them a little about Taylor. I always say to them, “Don’t put any expectations on Taylor.” I let that sink in for a moment and often received some startled looks from them. Then I would say it again with more emphasis and make my point clear, “Do not put ANY expectations on Taylor, because if you do, that’s all you will ever get from him. Put no limits on him and Taylor will EXCEED ALL YOUR EXPECTATIONS.”

He is going to exceed mine, so I guess it’s time to buckle up because the new ride is about to begin. It may be scary, but aren't roller coasters supposed to be?