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Family Stories - Berger

Father: Dan age 32
Mother: Karen, age 32
Children: Charlie, age 38 months, Michael, age 10 months

Karin tells her story: We have two children who both have an extremely rare genetic disorder. They will probably be totally dependent upon us for the rest of their lives. Charlie was born two months early because I had toxemia and they felt he would grow better outside the womb. He only weighed 2 pounds, 6 ounces when he was born, and the doctors found he had calcifications on the basal ganglia part of the brain. They tried to give us hope that everything would be all right and that only time would tell.

We took Charlie home to love and nurture him. He was a very irritable baby. Dan and I would stay up for hours with him. Neither of us was getting enough sleep. All through the early months, Charlie had infections, reflux, pneumonias, apnea, and every imaginable feeding and swallowing problem. I always felt that it hurt him to swallow, but the therapists were sure it was just reflexive and that we could get him to take food by mouth if we just worked at it. Well, we worked all that first year on oral stimulation, getting him to suck and swallow and relaxing him. The occupational and physical therapists worked like beavers to position him and help him relax enough to offset the spasticity and stiffness that made handling him so difficult.

As time went on, Charlie was not progressing as we had hoped. He did not smile, laugh, or do any of the things I had anticipated. It was recommended at six months of age that we enroll Charlie in an early intervention program. We wanted to do what was best for him, but it was emotional for me because the program was housed in a MRDD facility. I worried that my son was going to be like the older kids that went there. It was after my tour of the facility and especially after I went into the sensory-motor room that I knew that if my son was going to have delays, this was not the type of setting I wanted for him. It was on this day that my quest began for Charlie to lead as productive and normal a life as possible.

I got into an Early Intervention Collaborative Group through the Early Intervention Program. I was constantly trying to learn from other mothers and fathers, and I tried to be brave about it, but I was in tears a lot. I made a paper valentine heart one day in Charlie's infant-toddler class, and wrote allover it the feelings Dan and I had, and then I drew a jagged line down the middle, as if the heart had been broken, and I showed it around the room to the other mothers. It was the best thing I ever did, because after that, I started to feel motivated and to make friends with other families. Eventually, even though I am a very emotional person, I began to get those "broken heart" feelings under control.

Through the boys, I met a lot of wonderful people, who helped me realize that having children with motor and developmental delays did not have to be all that terrible. I could still hang on to the dreams I had of Charlie and Michael going off to kindergarten and other community events.

They have helped me see the good in my children. I realized that my children are not a burden on society and that they could have the potential to change attitudes and they could do the things that I had dreamed of --just a little bit differently.

I was busy! I had Charlie in a swim program and two early intervention programs. I knew from that time on that I would want full inclusion, and I started to get our two families to focus on how to include Charlie in everything, especially trips to the park, the zoo and taking walks in the neighborhood.

Finally, I began to feel good about what might develop if Charlie was entitled to everything any other child was entitled to. I still feel just that way. If you don't try anything, you won't get anything. After Charlie was about seven months old, Dan began to doubt that early intervention was going to work. We have always talked a lot between us, and we disagreed on early intervention, but we were in agreement on one thing --frustration over the way doctors and medical people treated us. Our biggest complaint was that our opinions didn't matter to any medical people and that they were not about to let us have our say-so. They were the almighty experts!

When Charlie was two years old, Dan and I decided we should have another child, and we were told there was no chance that Charlie's condition was genetic. We didn't go for genetic counseling. Why should we have thought it was necessary? In my seventh month, during a routine ultrasound, the doctor detected a cyst on the baby's brain. My dreams were shattered again. I was not going to have a baby that would tell me how much he loved me or give me or his dad a hug. The joy of seeing him take his first steps was gone. No baseball games to go to, no sliding down slides, no laughter, or no seeing him off to kindergarten.

Dan: We both wanted to have another child. I know we should have considered genetic counseling and I sure wish we had. Our families were happy for us, we were happy, and we even took a trip by ourselves to Virginia. Then two months before the baby's due date, Karin had a lot of pain and bleeding and she was put to bed, but the baby came anyway. Michael was very small. His skull size was small, and tests showed that he had the same condition as Charlie.

At least we are pleased because Michael is sleeping and eating much better than Charlie did. So we decided to let friends from our church watch Michael, instead of starting an intervention program for him. We have not been ready. We see Michael as a pleasant baby, who can on occasion lift his head up and (sort of) sit with support, even though his head lags and his energy level is so low that he would sleep most of the time if you let him. He looks at us, and sort of follows us with his eyes. He can stare at objects that are really shiny, and he startles really hard when there is a loud noise. His crying habits and his sleeping times are much more normal than Charlie's, but he doesn't push a cloth off his face, and he doesn't reach and grasp at objects you hold out for him.

Charlie and Michael's temperaments are very different. Charlie is more persistent and attentive, but medically fragile. Charlie is a pretty heavy toddler since he is tube fed now. Michael is easier to feed, so maybe he will not need the gavage feeding tube. Both boys are susceptible to infection, lung, and breathing problems. Michael's temperament is sunnier and more mellow, but he is also more passive. I think we can't wait any longer for an early intervention program.

Early Intervention Specialist: I remember three years ago, when we were trying to tell Karin that Charlie needed a feeding tube, she told us she was not ready emotionally for Charlie to have one. We thought she should just listen to us, since we had seen a lot of kids come through our program that were very similar to Charlie. Dan was there the day we told her about the feeding tube. She left the room crying and left the building without Dan. We did not see the impact that this could have on the whole family.

Now it's time to write an IFSP for Michael and do a preschool transition plan for Charlie, if Karin is really serious. I don't know where to start, since I'm involved with the swimming teacher, the home visitor, the band of friends from Karin's church, pediatric nurses, the third case manager this year, social services, and the most recent addition, a full-time home health aide. I know the IFSP procedures, but I don't know how to tell Karin and Dan that there is no way Charlie is going to get anything out of being in a regular class of three-year-olds. He now has a gavage feeding tube, two apnea monitors, and other appliances including standing chair, floor chair, scooter, and feeding table. The teacher will just assign an aide to Charlie, and they'll sit there on the sidelines, and that is all that will happen. We have experience with lots of kids like Charlie and Michael, and we'd be able to handle them best right here in this program. It's also better to have the same people taking the same approach to both boys. The family's IFSP goals would be more understandable to the family, too, if they just accepted the situation and kept the boys here.

Karin: I am excited about Charlie's IFSP meeting because the group of professionals know that I think he will benefit from finally being with kids his own age who are doing typical three-year-old things and who can be friends and language models for him. The physical therapist and OT and speech person have been so great about giving him what he needs this year. I hope they still think he needs to be in an inclusive preschool and have new experiences. I am counting on the fact that Michael's program professionals and staff will be easier to deal with, so that when it's his turn to go to preschool, and even beyond, there will be less resistance to inclusion and mainstreaming.

The Berger Family goals, as they see them:

The Berger Family wants professionals to accept them as equal partners and to respect their priorities, which are to plan for their sons' inclusion in school and community activities. Karin and Bob feel that professionals are reluctant to plan inclusively, but they are firmly committed to the principles of providing the boys with normal educational and social environments. Karin wants professionals to remember that, as parents, she and Bob should be in control of the situations that occur in their lives, even if their sons are going to be completely dependent on others for their care and nurturing.