July, 2006

Tips for Parents
by Becky Lowe

I think there is one topic that we, as parents, don’t talk about with our family and friends because we know they will not understand.  It is the stress and worry of parenting a child with autism.  The demands of raising our children with their very special and unique needs is very different from what the norm is.  Every choice we make in our day-to-day activities include our child and how they can adapt to what is expected of them.  We cannot plan a vacation or a trip to the park without looking at all the things that could possibly go wrong.  Spontaneity is thrown out the window and we are left with lists and charts and schedules that are necessary to keep our child’s life moving along without a meltdown!

When Katie was born, I had all these amazing dreams for my very beautiful little girl.  I dreamed of her dollhouse and of all her friends that would want to come over and play with her!  I had fleeting thoughts about her first date and how that would feel…I even wondered if should would want to wear one of the many prom or formal gowns that I have saved from my high school years.  I dreamed of the day that she would marry the man that loves and move on to her happily ever after. 

The day she was diagnosed was devastating because I felt as though all of those wonderful things would be taken away from her!  I spent hours of every day worrying and feeling sorry that all of my dreams for her had been taken away.  I thought my very affectionate and loving child would become unemotional and unattached from me.  Because I was so afraid of the stigma attached to the word autism, I was afraid to tell extended family and friends of her diagnosis.  I would tell others that she was speech delayed.  We stopped going to other people’s homes because it was too hard to explain Katie’s erratic behavior.  I look back on all this and realize that I had not yet accepted her diagnosis and certainly was in no position to explain it to others since I did not understand it yet. 

Looking back now, I cannot pinpoint a day or time when I accepted the diagnosis.  I just know that over time, it got easier.  When the Woodall Foundation first introduced us to ABA and I realized that things could get better and I did not have to give up on all of my dreams for Katie. 

I still wonder why I am saving those dresses.  They will be terribly out of style and by the time Katie would ever wear them.  Maybe one day she will want to play dress-up with them!  I still have my wedding dress tucked away, too!

WELCOME TO HOLLAND
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 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.

Back