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Let Us Introduce Ourselves - We Are the Hughes Family

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Brief Family-Focused Intervention:  How Professionals Can Make Home-Based Intervention Effective and Practical for Parents and Their Young Children With Multiple Handicaps.

Laurie - 27 years old

Bob - 28 years old

Mariah - 18 months old

 

 

 

 

In this story, you will find these topics discussed:  adult professional goals, cerebral palsy, child development, family priorities, and program options.

 

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 under 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 the help she would need now that she was not a new baby anymore.  I was hoping that moving closer to the University would mean that we could get more help for Mariah.  Eventually, we were able to move to a small apartment near the campus.

 

Now, Mariah is a sort of small little toddler.  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 happier that way.

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I’m glad Bob and I got to finish school (well, he’s almost done), because it’s going to be important that we have two decent incomes.  I want Mariah to get the services she needs.  I hear such horror stories from some of the other parents about not getting enough therapy because of the cost.  I hear about insurance and the fact that hospital reimbursement programs can just refuse to pay, and then what would we do?

 

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 right at the University.  Can you beat that?  I was so happy.  I called them up and we went over.  It took them two months to get the paper work, the home visit, and the orientation organized, but we started five months ago.  I think it’s great to have a child who started school at thirteen months of age!

 

All the Early Intervention people have been great.  They seem to really like working with the kids.  I keep asking for things to do at home with her that will help, and once in a while they give me an exercise to do with her.  I get the feeling that they don’t think that parents are smart enough to do anything at home.  Well, she’s my daughter and I’m going to do whatever I can to make sure she goes as far as she can.  I try to read to her as much as possible, and do whatever I can to get her doing things other kids her age can do.  We are not going to raise her as a handicapped child.  We think of her as, well, needing therapy, needing to eat better, and needing to talk more normally. 

 

Bob and I want to have more children but we are going to have to wait on that because I am still sort of shell shocked!  We are only just now beginning to understand what the professionals think about Mariah's situation 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 are just great about helping baby-sit.  I hope to graduate next summer, so I'm at the library a lot.  When I am home, I play with Mariah, 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 problems and an actual disability, like cerebral palsy. 

 

When I saw what Laurie went through in labor, delivery, and afterwards, I wanted to kill the doctor.  It was unbelievable.  Then trying to get services started for Mariah -- what a hassle!  Even though we’re now three hours 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.  We take Mariah everywhere with us.  We have a lot of friends who always include us and that makes Mariah’s situation easier to handle.

 

I'm glad we moved and we are very lucky to have the services and support that we do.  I just wish that the Early Intervention people didn’t treat us like incompetent fools.  They actually told me not to leave Mariah in the tub alone!  Who would leave any 18-month old alone in the tub?  I realize that some people aren’t that good at parenting, but those people shouldn't treat us all like jerks!  I hope that Mariah doesn’t go through life always struggling to do what other kids do naturally.  She’s such a sweet little girl.  I wish that I could do more for her.            

Ask Dr. Susan