Berger Family Story - Karin Speaks

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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.

 

Karin Tells Her Story

Dan's Side of the Story

The Early Intervention Specialist

Berger Family Goals

Berger Family Activity

Checklist for Promoting Shared Responsibility and Collaboration

Inclusion and Normal Environments

Principles for Development of Family-Centered Outcomes

Process of Collaborative Consultation (Goal Setting)

Temperamental Characteristics

Ask Dr. Susan