Welcome to Holland...(AKA: Autismland)

I was pretty much at the end of my rope and ready to give up and say, "Look, I'm just not good at being a mother and I don't know what I'm doing!" I felt helpless and horrible and I hated myself for failing Braden when it was my responsibility as a mother to teach him. Jeremy and I considered that Braden might have some kind of disability, but we had no clue what it could be. We talked to the pediatrician at his 18-month check-up and asked, "Could he possibly have autism?" The doctor assured us though, that he didn't and I was so relieved I almost cried.

Braden continued to have problems though and I continued to be frustrated and angry with myself because I didn't know how to help him. Here I had the sweetest, cutest most adorable boy I could possibly imagine and I couldn't reach him. I felt like he had no idea who I was or that I was even his mother. He seemed to like me just as much as a stranger in the mall. 

 One day, my brother in law comes to me and says, "Hey, did you see the latest Oprah show? It was all about autism and they talked about some things that Braden does sometimes." They talked about turning cars and trucks upside down and just playing with the wheels rather than driving them around. They talked about sensitivity to loud noises, and the tantrums. I just thought "no, the doctor said it wasn't autism. It can't be." But my brain wouldn't let the thought go. It gnawed at me and wouldn't stop so I decided to put it to rest. I knew that if I just "googled" autism I would probably get a billion hits and each one would probably have a different take on it. So I tried the CDC website and looked up autism to see what they had to say about it. They had a list of signs to look for that might indicate your child has autism—I went through the list.

Red Flag behaviors that someone with autism might have:

1. Not respond to their name by 12 months of age (check! Braden still didn't respond when we called his name. It was a lot like talking to a wall most of the time.)

2. Not point at objects or show interest (point at an airplane flying overhead) by 14 months (Check! Braden never shared interest with us and never pointed at things)

3. Not play pretend games by 18 months (Check! We could barely get him to play with us at all. He was basically only interested in his cars and how they worked.)

4. Avoid eye contact and want to be alone (Check!)

5. Have trouble understanding other people's feelings or talking about their own feelings (Check!)

6. Have delayed speech and language skills (Double check! Braden still wasn't talking at this point)

7. Repeat words or phrases over and over (echolalia)

8. Give unrelated answers to questions

9. Get upset by minor changes (check! Braden would get so upset by someone just opening or closing a door! I would definitely put that under this category)

10. Have obsessive interests (Check! Only wanted to play with things with wheels, and only wanted to play with the wheels themselves)

11. Flap hands, rock body or spin in circles (we really didn't see any of this behavior except that when he was upset he would sometimes flap his hands)

12. Have unusual reactions to the way things sound, smell, taste, look or feel. (Check! He was very sensitive to sounds, covered his ears a lot, and would only watch certain types of cartoons. He also wouldn't eat mashed potatoes, and still doesn't)

 As I went through this list and realized that Braden fit 10 out of the 12 red flags I just knew that this was the answer to the questions I had been asking myself for months. "Why is Braden like this?" "What have I done wrong?" I had been praying hard for an answer and here it was in front of me. I had another one of those rare moments when God talks directly to you—like I had when Jeremy asked me to marry him, I knew it was the answer, but it was not the one I wanted. I wanted Braden to be fine, and just be going through some strange phase that he would just grow out of, but at the same time, I was relieved. I realized that I had not done anything wrong to make him this way. I wasn't a complete failure after all!

Then the reality of it all started to sink in. I had no idea what to do next. I didn't really know anything about autism and I certainly didn't feel qualified to teach a child with autism. I didn't know who to call to get a diagnosis or who to call to get help. I sat at that desk and watched all my dreams of Braden going to college, going on a mission, getting married and having children disappear. There was no way to know what his life would be like now. I knew he was a very smart and very special boy, so I had hope, but it was devastating all the same. I had to let go of that dream and I really didn't want to. I had to sit and contemplate the idea that my child may never talk at all. He might never call me "mom" or Jeremy "dad". That he would be misunderstood and judged by people who didn't know he had a disability. That he would probably be made fun of because kids can just be mean sometimes. So, I felt relief and devastation and I was so completely overwhelmed by the thought of the future and what would happen to my sweet little boy. I knew our lives were changing again. This wasn't what I had PLANNED for him, or for us.

One of my massage clients who had a child with special needs told me a story the night that I told her that Braden was probably autistic that I want to share. Someone else wrote it, so I am not taking credit for her work, but I do want to share it because it is a perfect way to explain what I was feeling.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

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.