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Family Stories - Joiner

Mother: Laurie, age 27
Child: Mariah, age 18 Months

Laurie tells her story: When I had Mariah, I was in my fourth year of a five-year program at Ohio State. I'm now a registered pharmacist. My husband is in his last year of an engineering program. We never expected to be parents until we were both out of school, but, surprise, surprise, it happened. My pregnancy was a surprise, but Mariah's birth and the problems that followed were an even bigger surprise. The doctor let me stay in labor for 48 hours, because I was three weeks early. He thought it was false labor. I knew it was real.

Mariah has cerebral palsy. She was less than four pounds at birth. They put her in an incubator, and she stayed on oxygen for ten days, then her lungs got filled up and she got dehydrated. Two weeks later she had a seizure, and about then the doctors told us that she probably would have cerebral palsy. Because of all the complications with Mariah, we were glad that we were living with my parents. It was also lucky that the spring quarter had ended, so I was free for the summer.

We stayed with my folks, and used them as baby-sitters, until Mariah was about six months old. Then, Bob and I got concerned about Mariah getting therapy at an early intervention program that I read about, and we thought that she needed a good day care program. I'll tell you why I wanted day care. We discovered that Mariah was definitely not a helpless baby anymore. Her personality was coming out, and she was becoming a real character, with a million sounds and expressions on her face, a wicked sense of humor and determination about everything. She looked like a "people person" to me.

My job is at a pharmacy near the university, where Bob's finishing up his degree. We talked it over, and decided to take subsidized housing in an apartment complex near campus, and my parents threw a fit. They were mad at us for months, because they are too far away to take care of Mariah now. They didn't like the idea of their granddaughter in day care. I do like the idea, because I have to have a car anyway for work. The Child Care Center at the university had a waiting list of 20 infants, but we found a really nice place called "The Live and Learn Child Care Center."

After we moved, I was reading the parent magazine that comes to the house free, and I read an ad for an Early Intervention program that was at the University. Can you beat that? I called them up and we went over. It took them two months to get the paper work, the home visit, and the assessment organized, but we started day care and early intervention five months ago. I think it's great to have a child who started school at thirteen months of age!

Mariah is a very small little toddler for her age. She can't weigh 16 pounds, if she weighs an ounce. She can sit, crawl and scoot around. She says "mama," "dad," " ba." Mariah asks for things by talking and pointing. We understand her and she definitely understands what we say. She has a hard time feeding herself, but I let her do it as much as possible. It's a little messy, but she's washable. She's also the independent type. She says "no" a lot, and complains when we try to do anything for her. I hope I'm doing the right thing, but I let her do whatever she can. It takes more patience and time than I have, but she is much easier to manage and happier that way.

I'm glad Bob and I got to finish school (don't ask about the loans we have), because it's going to be important that we have two decent incomes. Mariah will need a lot of services, and already after only two months in the early intervention program, Bob and I hear horror stories from parents about not getting enough therapy because of the cost. I hear about insurance reimbursement programs that refuse to pay. We'll need money, and plenty of it.

All the day care people are great. They seem to really like working with infants and toddlers, and they treat them as people, not animals in a cage. The early intervention specialists are not what I expected- not at all. I keep asking for activities and therapy to do at home, and once in a while they give me an exercise or tell me some information, but I get the feeling that they don't think that parents are smart enough to do any teaching or therapy at home. Well, she's our daughter and we're in charge, and Bob and I are the experts on Mariah- not them.

I try to read to her as much as possible. I believe in that. On the weekends, I sit outside and try to get her involved in playing with other kids who live in the complex, but some of them are pretty mean about her not walking yet and having a disability. Mariah has a walker, a scooter chair and a red wagon, filled with bricks to make it real heavy and sturdy, and she gets around great. I try to ignore their mean talk, but what about when she's older and understands what they are saying? We are not going to raise Mariah as a handicapped child. We think of her as definitely needing therapy, needing to eat better, and needing to talk more normally. That's it.

Bob and I want to have more children but we are going to have to wait on that. We are only just now beginning to understand what the professional experts think about Mariah's future condition, and what we can expect her to do as she gets older.

Bob: Laurie and her parents have been handling most of Mariah's needs. Her folks were just great about helping baby-sit. I hope to graduate next summer, so I'm at the library a lot. When I am home, Mariah and I play with blocks, do puzzles or I take her for a walk or just roll around on the floor with her. When she was born I was really shocked. I never thought about having a baby who had an actual disability, like I never even saw a handicapped person before, except on the street or on TV.

When I saw what Laurie went through in labor, delivery, and afterwards, I wanted to kill the doctor. It was unbelievable. Then trying to start Mariah on therapy and day care-- what a hassle! Even though we're now further away from Laurie's family, being in a place that offers services is worth it. My in-laws come down once a month, and that gives us a break. My folks can't really accept that Mariah has cerebral palsy. They never have even seen her.

We take Mariah everywhere with us. We have a lot of friends who don't have kids, or are just too broke to go anywhere, so we just hang out and that makes Mariah's situation easier to accept and get used to. I met one Dad at the day care parent meeting who has a boy there with Down syndrome, and we talk about what to do about the kids when they are older.

The parents at the early intervention program don't seem to be given options or choices in what they want. We all just go there like sheep. Laurie and I want to be asked what out needs and wants are, and asked about our family priorities. The top priority is that Mariah be helped to lead a normal life. That's reality, right? We hope that Mariah doesn't go through life always struggling to do what other kids do naturally. She's such a sweet little girl.

Whatever happens, we aren't going to sit around and worry for twenty years about her life. Teachers and therapists should get a grip and realize, sure, we are curious and worried about Mariah's future, but we are very optimistic, now that we see how great she is developing as a person. We aren't the smartest people in the world, but we want to make the decisions, based on professional advice, of course.

I know that the Live and Learn Child Care staff isn't trained to be specialists in cerebral palsy, but they have the right idea-they treat Mariah like everybody else. The Early Intervention people came out to the center only once, and gave the teachers some exercises, but the staff thought they were bossy. I agree. Those folks make me feel like an incompetent fool. They actually told me in a meeting in front of other specialists not to leave Mariah in the bathtub alone! Who would leave any 18-month old alone in the tub? I realize that we aren't that experienced at parenting, but those people shouldn't treat us like we're brain dead.
The Joiner's Family goals, as they see them:

The Joiner Family wants high quality childcare and therapy services for Mariah. Laurie and Bob have high standards for themselves and their child, and feel professionals and teachers should inform them of all possible options and choices, because they feel inexperienced about what Mariah's normal development should be. They also want to know more about cerebral palsy, speech delay, and proper nutrition, since these are priorities for Mariah, as they see it. They want to make ongoing plans for Mariah's future with professionals who respect the fact that they are experts about their own child and want to be treated as partners with the professionals.