Once upon a time....PDD

Roselle Jerome-Dalton

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It was the most wonderful day of my life, the day I gave birth to my beautiful baby girl…Rachel. She was perfect and my plans for her future included great schools, a fabulous career and designer dresses. But as time marched on, it was clear that planning for Rachel’s future would be a day to day process and some days actually required taking it hour by hour.

Rachel was born in 1986…modern times. But if you presented with autistic characteristics along with average or even above average intellect, you might as well have been born in the dark ages. Granted, there were programs that offered therapies to help with developing communication skills and controlling behavioral dysfunction, but what happens next. How do you plan for a child that has normal abilities in association with a variety of autistic conditions? Well, twenty years ago you couldn’t, but today you can.

When Rachel was about to graduate from High School there wasn’t any clear direction to pursue, so we attempted college. After one year, 19 credits and a GPA of 3.6, she would have no part of continuing with school. By this time I was as much the student as she was and we were both completely exhausted. Now it’s one year after graduation and without a sense of purpose and a lack of daily structure, her behaviors became virtually unmanageable. She wanted so badly to experience life the way others her age were doing, but it was impossible. She was held in a vise of autistic conditions.

Now what? Let’s try VESSID, vocational and educational services for individuals with disabilities. Along with a lovely case worker, we checked out several vocational training programs. Rachel chose one that she wanted to attend and within a few weeks, she had managed to turn the place upside down. When the very well respected director of the program called me to pick her up immediately, I sobbed asking, “What do I do now?” She replied, “Mrs. Jerome, the ONLY thing that can help Rachel is a group home placement.” I asked her to repeat herself because I truly thought I misunderstood what she was saying. Rachel had a home, she just needed a place to go to during the day to keep busy and find her purpose…RIGHT?

At that moment the words of another very well respected neuropsychologist smacked me in the head. When Rachel was two years old, she was evaluated by an early intervention program and diagnosed with PDD, pervasive development disorder. When I asked the neuropsychologist on the team, “What does that mean?” She explained that Rachel had definite autistic characteristics but also appeared to have the ability to learn. So I asked again, “What does that mean?” She said time will tell…we really don’t know. We will give her specialized therapy to address her needs but at some point she might have to be institutionalized.

In one fell swoop, the floor fell out from under me and I felt like my beautiful baby girl was gone. I know she was trying to be real with me, but those words cut like a knife. I was terrified and an excruciating sense of loss came over me. Just the mere thought of such an outcome sounded cruel and barbaric to me…NO WAY!

As the years went on, her speech evolved marvelously and her intelligence became very apparent. I played by the rules. Rachel received a plethora of therapies and teachings to help her to progress and conquer her challenges. I knew that we still had a long way to go but I thought we had escaped what I feared the most. Now seventeen years later, I was being told that she needed a group home placement. Isn’t that the same thing as PUTTING HER AWAY? NEVER!!! We had come too far. We won’t fail. I’m not going to put her in a group home or anything that even resembles such a place. Rachel is very intelligent…a group home is not an appropriate placement for her.

Courtesy of Spectrum Publications