Forever Parents

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Cheryl and Rudy Foschi

Linwood, New Jersey
Sofia, 20, has trisomy 8 mosaicism, as well as autistic tendencies

When I had Sofia, in 1991, Rudy and I called her our miracle baby because it took us a decade to conceive. But I could soon see that something was wrong. Sofia couldn't pick things up and at 6 months she still couldn't sit up on her own. When I took her to the doctor, he basically told me I was crazy and to stop hovering.

Sofia was nearly 3 when she was finally diagnosed with autistic tendencies and trisomy 8 mosaicism, which causes mental retardation and muscle weakness. She was able to attend special classes at a local public school, and at first she had a little circle of friends. But as the kids got older and realized Sofia was different, they turned into monsters. By sixth grade she was coming home saying, "Mommy, no more school." We put her in a private day program but Sofia didn't fit in there either: She simply wasn't as high functioning as the other kids.

Rudy and I started looking into residential schools, hoping that she'd do better if she was around kids with a greater range of special needs. When we found the Benedictine School for Exceptional Children in 2004, we knew it was perfect for Sofia, even though it was three hours away from home. I cried every day for the first six weeks, but she loved it from the start. The change in her was beyond anything I could have imagined; she made real friends for the first time. It was wonderful to see her so happy.

Sofia will turn 21 soon, and that means the funding for school will run out. We're hoping we can find a group home for her somewhere nearby but the odds are against it; there are about 6,000 people with intellectual and developmental disabilities on the waiting list for residential placement in New Jersey. Now that Sofia has developed her own life, coming back home would be a real tragedy for her. Rudy and I are afraid she'll shut down and regress.

No matter where Sofia ends up living in the future, her safety will always be a huge concern for us. She's very pretty and sweet, but she doesn't really recognize danger. Rudy and I worry that she'll get raped or taken advantage of in some way, or that someone will lure her away just by saying nice things to her.

Coping with so much uncertainty has definitely been tough on us, but when you're with Sofia it's impossible to spend much time dwelling on the negatives. She can find joy in the smallest things, and she has taught me to do the same. It's pretty incredible when you can learn something like that from your child.

Continued on page 3:  Sheina and Stuart Cagen

 

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