Forever Parents
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Forever Parents

Child rearing follows a pretty standard time line: You raise your kids, they leave home and, although you'll always feel protective of them, they're in charge of their own lives. But for the parents of disabled children, this may never be the case. Three mothers talked to us about what life is like when the job of parenting never ends.

Charlotte and Gary Hall

Denver, Colorado
Jordan (left), 19, has autism
Julian, 22, has cerebral palsy

Julian was 9 months old when he got sick. At first I thought he was teething. But when he started running a fever and acting lethargic, I took him to the hospital just to be safe. He had a seizure and a stroke, then slipped into a coma right there in the ER.

The news from the doctors was horrible: My little boy had chickenpox, which caused a brain inflammation called viral encephalitis. Julian survived, thank God, but he developed cerebral palsy as a result of all the damage to his brain. He was released from the hospital just before his first birthday, but I felt like I was bringing home a newborn. He couldn't even hold his head up.

When I had Jordan two and a half years later, I could sense something wasn't right when I tried to breastfeed him. He didn't make eye contact, and he didn't like to be held. It took doctors three years to diagnose Jordan with a learning disability; when he was 8, doctors told us he had autism.

My boys have grown into fine young men. They still live with us, and they probably always will. They have the same IQ -- 65 -- and they both have epilepsy, but their challenges are different. Julian has no use of his right arm and limited use of his right leg, whereas Jordan's issues are social. He'll blurt out whatever he's thinking sometimes, and he doesn't understand things like personal space.

When the boys were young, Gary and I felt isolated from other parents, who didn't seem comfortable approaching us, and we didn't know how to connect with them. That changed nine years ago, when I signed up Julian and Jordan for Special Olympics. I can't say enough about how much the program has helped them. Playing sports and making new friends really boosted their self-esteem. And Gary and I finally had a network of parents to turn to for advice and insight.

Every time the two of us go out without the boys, we worry about something happening to us even though we have a will leaving guardianship of them to my aunt and uncle. Another issue for us is that we won't be able to enjoy retirement the way most people can; it's as though we'll have young children for the rest of our lives.

Whatever challenges come our way, we can face them. Julian was diagnosed with non-Hodgkin's lymphoma four years ago (he's in remission now). When I explained cancer to him, he shrugged; he was just happy he'd still be able to play basketball. Everything rolls off his back; that's also true for Jordan. I think that's partly due to our faith. Church has been our anchor.

The boys will always have to rely on us, but that's not such a bad thing. Because they aren't like other kids, they spend more time with us, so we're much closer than the average family. That's a real blessing, I think.

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.

Sheina and Stuart Cagen

Houston, Texas
Yerachmiel (Itzy), 24, is quadriplegic

The accident happened on Itzy's second birthday. He was playing in front of our house when he was hit by a car; the driver never stopped. We still don't know who did it. When a doctor at the hospital said Itzy might not make it, I told him, "You don't know that. You're not God." I had faith that he would wake up, and he did. It was a miracle.

Nothing was the same after that. Itzy is quadriplegic and he can't breathe for more than about 45 minutes without a ventilator. For the past 22 years someone has always had to be with him to make sure his airway stays clear and to help him dress and clean himself. We have one day nurse and two night nurses, and they help us so much; they're almost like part of the family. Still, we don't have real privacy. It's kind of like having guests stay with you for a long time -- no matter how close you are to them, you never feel totally relaxed.

On a typical day, one of the nurses wakes Itzy, gives him a bath, feeds him, and brushes his teeth. Then the nurse or Stuart or I take him to Houston Community College and sit with him during his classes and take his notes. He's studying to be a film editor but he'd really love to be a sports announcer. He could do it; he just has to wait to speak sometimes until the ventilator gives him a breath. When he doesn't have school, he spends time talking to friends on the computer by using a special mouse that he controls by moving his head.

People may simply think of Itzy as disabled, when in fact he has abilities that many of us lack. He has a lot of insight into people and a unique ability to make everyone feel comfortable around him immediately. You don't see that every day.

Watching over Itzy means that Stuart and I don't have much freedom. We never go out. We could if we really wanted to, but we'd have to find someone who's qualified to stay with him. People might wonder if that bothers us, but we never feel like caring for Itzy holds us back. It's such a privilege to have him. He has changed our world, but he has also changed the way we see the world. Stuart and I don't take anything for granted because we realize how important it is just to be able to move a finger or breathe on your own. We do worry about Itzy's future, even though we've arranged guardianship for him should something happen to us. But right now the most important thing is to find ways to make his life better and increase his independence. Stuart and I stay on top of all the new technologies and therapies. We really just want Itzy to be happy. Isn't that what every parent ultimately wants for her kids?

Originally published in Ladies' Home Journal, November 2011.

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