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Family Stories - Evans

Father: Michael, age 30
Mother: Margie, age 30
Children: Mary Christine, age 6 years, Anna, age 5, Rachel, age 25 months

In this story, you will find these topics discussed: cerebral palsy, collaboration, effects of prematurity, hearing impairment, speech and auditory disorders, and support services.

Michael tells his story: Rachel was a premature baby, who was born with hearing loss, sucking problems, spasticity, and lung problems. She was two pounds and ten whole ounces when she arrived nine weeks early. From the beginning, we have been frustrated because the doctors don't give us reasons for her being born so early, except Margie had toxemia and high blood pressure. She was so small that Margie and I were not sure that she would live. The sixth floor at the hospital was our second home, you can be sure of that. Before she was six months old, Rachel had several bouts of respiratory infections, and she weighed only ten pounds at nine months.

After Rachel was born, the doctors were sympathetic, but didn't have much good news about Rachel's development. They told us that it might take years for her to outgrow the problems she had at birth. They described them as "motor delays and maybe speech and hearing problems." One specialist said that small babies like Rachel need at least eight years to adjust to all their difficulties. I see how Rachel has grown and developed, though, and I'm sure she'll be able to do more than we expected when they first talked to us. We want her to have a normal life.

Rachel's progress is due entirely to our decisions to do anything to get her the help she needs. My parents and Margie's folks, the Peters, are middle European and very persistent, stubborn actually -- and we inherited that from them. Oh, it might also have a little something to do with the Parent-to-Parent program at the Health Department -- only kidding! Margie and Rachel started the Early Intervention Program when Rachel was 12 months old. They got a speech and physical therapist to see her every week at the program. Rachel is a hard working toddler and she has made good progress.

Now I think that Rachel is ready for a more stepped-up program, but Margie disagrees with me. Rachel definitely needs to learn to walk and talk -- now! She still likes to crawl around the house, picking up toys and throwing them down. She's too old to be acting like that. Rachel gets her sisters to get her whatever she wants by persistent and very loud screeching and whining. Considering her age and hearing loss, which I have to assume is not really all that bad, I think she is spoiled, and I want Margie and the girls to refuse to get her anything that they know she can get for herself.

Rachel plays alone too much -- she's a loner. She should be doing more play with other kids besides her sisters. Rachel doesn't pretend or play games the way the girls did at her age. She wants everything her way. I think she needs more intense therapy. I do have to say that she is developing more ability to pay attention. She showed a really long attention span, playing with Mary, dressing up in hats, furs, shoes and jewelry, and bossing her sister, saying, "achel uky." What kind of talk is that?

The longest time Rachel has ever played at home with me was one day when we filled the bird feeders with seed. She played for over ten minutes on the ground gathering up the seed we spilled and calling the birds and crawling around putting seed back in the feeders.

Margie: I get so frustrated with some of the professionals who work with our family. What we really want is for Rachel to go to regular school, be a regular kid and have friends. Last week we had an IFSP meeting and I was so upset when they wouldn't listen to me that I left in tears. Later, though, we had another meeting and it went better. I want them to see that the most important thing is getting Rachel ready for inclusion into preschool.

I think we can do that if we focus on a few things. We can work with Rachel on multi-sensory play that will help her develop her vocabulary. I think she can learn her alphabet before she starts preschool. She needs to work with the physical therapist so that she is strong enough to walk, even if it's with a walker, instead of crawling. If she did more exercises now, I think she could do gym and tumbling with friends at school next year. The last thing is I'd like her to get coaching in using a computer keyboard, kitchen tools, and pencils and crayons so that she can do more things with us and with her school friends.

Early Intervention Specialist: Twice a week I go to Rachel's house to work with her on her skills. It's one of the high points of my job. Rachel works hard, and she enjoys the attention of all her "family helpers." Rachel adores playing with me and her older sister, so we make her exercises into a game. The exercises are auditory and spatial primarily, but I try to encourage her to walk as much as possible.

Rachel's family is getting all the services they can for her. She's in a day care two days a week, an Early Intervention program two days, and a recreational mother-child group on Friday. The physical therapy is done at school. Her parents encourage her to grow and be independent.

Rachel is certainly mobile. She likes to push the stroller, with her doll in it, from down on the floor. She's got a lot of energy and she does not like to nap! Rachel's hearing loss is serious but she is being evaluated now for aids. She does so well telling people what she wants and thinks with sounds and gestures. She wears earphones when her sister and I play, and we talk into the speaker, turning the volume up good and loud. She hears!

It's surprising that her speech is as clear as it is. I'm sure that she's got to be bright to be able to pick up on so many words from the distorted sounds she must hear. I wish we could test her every month, just to keep up with the situation. Her vocabulary is growing each time I see her. Her family has helped her develop word-sounds by responding quickly when she says anything.

I personally think Rachel's father is unrealistic about how quickly she'll catch up to other children and overcome the effects of prematurity on her sensory-motor development. I don't see him often, but I know he feels that way. He is worried that she is not progressing fast enough and that she doesn't always focus or stay "on task." He wants her to do more than she does -- but he will take the time and work with her, just as often as her mother does.

Rachel has learned to be happy, confident, and secure with me and with others. She's got a lot of energy, and she's adaptable and very sociable with all the early intervention people. The Evans are a truly remarkable, loving family.

The Evans Family goals, as they see them:

The Evans Family wants professionals who are willing to "problem-solve." They understand that Rachel's prematurity and hearing loss will take time to overcome, but they expect professionals to find creative ways to help her and to put these activities and ideas into a useful and meaningful IFSP. Michael feels that Rachel needs more services in order to speed up her progress and make inclusion into a regular preschool possible. The Evans Family wants more help with auditory training and assessment in order to facilitate Rachel's overall progress.