"In The Beginning..."

by Katherine Lee

"My husband's hand slipped into mine," I continued, tears beginning to well up in my eyes. My lovely new consultant had asked about the day of the diagnosis of our son, what had happened, how we had reacted. She listened intently, her eyes clouding over, as well, as I told her of our shock of the severity and hopelessness of the diagnosis. I wondered, once again, that I could still begin crying more than five years after the event, as if I were hearing it all over again.
I thought of all of you who have only recently been given the diagnosis. I thought of your ride home in the car, of how you tried to figure out how to carry on the day. I thought of how my husband, in shock, tried to go to work and called crying from his office. I thought of you calling your family and friends to tell them. For some of you, you knew already there was something seriously wrong. For others, you had no idea you would hear those words.


Unfortunately, many of you will report that you were given the diagnosis without hope.

In our family, we learned of ABA before we ever knew our child had the disease. We had a friend whose niece had been diagnosed and was in a program. You, who are new to this, have found out about ABA through books, friends, doctors or other sources.

You have so many questions --

How do I get a team together? How do I find a consultant? How do I get educated? How do I fund a program? How do I manage a program? How do I survive emotionally? The simple answer to this is that you will need to take significant action:

1) Network with other parents constantly. They are a major resource of knowledge on all ranges of topics. You cannot spend too much time doing this.

2) Network with therapists and other professionals.

3) Read, read, read.

4) Go to meetings, trainings, conferences -- everything you or a friend can go to to gain knowledge.

5) Get the support of family members and friends. They can help in many areas. You will need to accept that help, even if it is difficult for you.

6) Be completely involved in your home program in every aspect -- as much as it is possible for you. Detailed knowledge of your child can make a huge difference.

7) Keep learning. Don't get over confident in your knowledge. I have found that continuing to search has brought us to where we are. I continue to go to beginning conferences to remind myself of the foundational principals of ABA.

Please know you are not alone.


Today, you have resources that were not available five years ago in this area: multiple internet lists with informed parents to help you . . . many ABA books newly published . . . new providers opening business as colleges graduate behavior analysts . . . and local meetings, trainings and conferences. You will have support.

Finally, about the crying. You will cry over this again and again, because it was one of the most painful moments in your life. But, we who have gone before are here for you. And, as you turn that pain into progress, you will also rejoice . . . and we will rejoice with you.

My heart is with you, Katherine Lee

The above article is editorial in nature and reflects the personal views of the author.


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On your Mark, Get set....Go!
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