Thursday, November 11, 2010

It's Never What You Expect

You can't plan for things like this. You don't get pregnant and count on having a special needs child. It's an unexpected turn of events that you have to change your whole life for. We were taken aback with Jordan's diagnosis at 30 months, and weren't quite sure what to do. But with the help of my mother, who has been and continues to be a wonderful resource and the staff at The Kennedy Donovan Center, we got Jordan hooked up with Children Making Strides and into Applied Behavioral Analysis (ABA) which helped her tremendously in preparing for preschool.

But getting back on point, everything changes when you discover that your has a delay. I recently reconnected with an old friend, who sent me the following poem. It more than aptly describes everything that my family is going through in living with Jordan's Autism:

Welcome to Holland

Written 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 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. 


You can find poems like the one above, as well as many other helpful resources on autism, at this website:

If you think your child may need Early Intervention services, and you live in Southeastern Mass, please contact The Kennedy-Donovan Center:

For ABA services and beyond, visit Children Making Strides

And what better way to end a post, than with a smile!

Monday, November 1, 2010

Trick or Treat!

         Based on the last photo session we had, I thought Jordan would be fine when I scheduled their Halloween portraits for last Wednesday. She had a half day at school, and took a great nap in the afternoon. She was well rested and happy as a clam. We got her dressed into her "Tinka Beww" costume and we were on our way to Sears. When we arrived, Jordan ran in and played with the toys and some other children that were there. She said hello to the photographer (coincidentally, the same one that had taken our family portraits 5 months ago) and helped us get Johnny into his costume.
           But I should have known that nothing ever goes according to plan. As soon as we walked into the studio itself, she lost it. She began to sob and clasped her hands over her ears, a defense mechanism of hers when something frightens her. I tried everything I could think of, from asking her to give Daddy and Johnny hugs and kisses, to tickling her, to tossing her in the air. She wanted none of it.  I ended up taking her for a walk around the store to help her calm down. We sang our ABC's and she finally relaxed. Until we made it back to the portrait studio. She started clinging to me again like white on rice, sobbing and crying. We sat on a chair right outside the door and watched as Johnny had his pictures taken. I managed to convince her to sit on my lap, and we snuck in a few photos. The poor thing was so worked up we had to stop.

          With kids on the spectrum, you have to be prepared for events like this. Even if a situation is familiar, if something is off or one thing has changed, it can shake their whole world. My belief is that not all the same people were present for the photo session (Uncle Josh was not there) and that really threw her off and thus was the catalyst for her meltdown.  The most important thing that I have learned, especially from this situation,  is that she is not an autistic child, but a child with autism. She is first and always, a child. And the best way to deal with an unhappy child is  to maintain a calm and soothing demeanor.  She was able to pick up on my tranquility and feed off of it, and it helped her to feel safe and eventually at peace.

Despite all the commotion, we still managed to get these great shots!

        Trick or Treating itself was a blast. Jordan fed off the excitement of all the other kids and went up to each and every house that they did, holding up her bag and saying "trick or treat!"  This was a sharp contrast to last year, when she would only go with Uncle Pat and would not (as we later found out, could not) say a word.  She remembered to always hold my hand when we were walking in the street, and held the flashlight out in front of us when it got dark. Her progress is phenomenal, and she's only getting better. It was so much fun, and we're really looking forward to next year!