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Family Stories - Brown

Elaina - 33 years old
Lee - 32 years old
Jess - 7 years old
Amanda - 6 years old

In this story, you will find these topics discussed: developmental delay, family priorities, pervasive developmental disorder, play-based assessment, and transitional planning.

Elaina tells her story: My story has two parts: "then" and "now." I have to tell it that way because I want to tell about our family, whose child's problems were discovered in infancy, but nothing was done for a long time.

As a baby, our older daughter Jess was full of energy and into everything. She walked and talked early. She was stubborn and a picky eater. She didn't take a nap after she was a year old. Mama took care of Jess, and after Amanda was born, she said we were lucky that Amanda, our second daughter, was such a good baby. Too good, it turns out.

We had no idea of a disability, but after about six or eight months, the pediatrician thought Amanda was developmentally delayed and had a mild form of cerebral palsy, but they kept telling me there was no way to know for sure. Maybe we should have seen the warning signs, but we didn't, mainly because of our feelings about family privacy. In our cultural background, which is Slavic and Ukrainian, we believe in keeping family life in our own ethnic community. We pretty much have always stayed to ourselves, and don't have many friends our age. Besides, our mothers did not see any problems. Babies were to be loved and cared for and did not do anything anyway. Our parents did all the babysitting, so we figured they ought to know.

Lee: After Amanda was a year old, I wanted to build a new house and move into an older area of the city. After we moved, our new pediatrician insisted we accept the reality that Amanda's patterns of movement were delayed, which might mean she had cerebral palsy, or maybe a combination of cerebral palsy and mental retardation. She listened to us carefully when we told her about some seizures and other problems that Amanda had, and we listened, for the first time, to a doctor. I more or less learned to trust her.

The pediatrician insisted an Early Intervention Specialist come help us test Amanda and see where she was developmentally delayed. When the Specialist came, she said that an early intervention program was essential. We waited two months for them to test Amanda at the EI center, and the results were that they still weren't sure of anything, except that she should start attending an EI program. They also said that we should start working with physical therapists and speech therapists. Amanda was a little over two years old when we started the program.

We asked exactly what Amanda's motor development would be like in two or three years. We asked them to tell us what her mental potential would be. Would she learn to walk? What intelligence would she have? We got a lot of "We can't really tell you." I was angry at them for not telling us anything, but I went along with it. We started the program in the winter, and by summer, I told my wife that we were going to just take the summer off, to be a normal family. We agreed we needed to slow down and get the family calm again.

Our family members were a problem that we just had to straighten out. My mother and father and Elaina's mother were "babying" Amanda, pitying her, and carrying on like this was the worst disgrace. They didn't even want to take her out of the house. We finally had the Early Intervention Specialist show them how to get her to do things for herself and to answer their questions, and after that, things were better. The grandmothers both stopped feeding Amanda, and stopped carrying her around like a baby. They don't approve of the changes, but they have gone along with it.

That summer was really good. Amanda was three and getting really big. I built Amanda a huge regular bed, with high sides on it, so she couldn't get out, but it was still a "big girl" bed. We just did a few language exercises that we wanted to do. Most of it is just common sense anyway. I got a big back yard pool, rubber mats, balls and a bunch of yard equipment and we just exercised and played all summer. Amanda loved her summer of learning to walk.

Elaina: When fall came, we had achieved a major milestone for Amanda -- she was walking. She is a tall and strong girl, built like her father, and Lee was so proud of this accomplishment. Lee and I had to admit we had been ignorant of how important it was for Amanda to get a push in her development, even if she was going to be slow. That's when the "now" part of the story started. We put Jess into a preschool class, which she loved, and we went back to Amanda's Early Intervention Program, too. I cut back on my real estate job and decided to give up selling home cosmetic products.

The speech therapist told us that she didn't think Amanda would ever talk, but they agreed that she was improving, even though she'd had a seizure. She was doing things like stacking toys, but it was not yet very purposeful or intentional play. She needed more intensive speech and language training now that she had learned to walk and had more energy for other things. Amanda was retested and evaluated and a year ago the doctors finally told us, when she was thirty-four months old, that the disability she has is called "Pervasive Developmental Disorder."

We've been through a lot and now we are facing some important new decisions. Now, Amanda is 68 months old! She is in an integrated kindergarten program. We really like the program, but we are not sure she is getting enough one-to-one therapy. It seems as Amanda gets older, the services just aren't there to the same degree. She still gets physical therapy, occupational therapy, and speech therapy, but not as much as she did last year. So we still work with her at home, but Lee and I do not want to be Amanda's therapists. We are not the only parents who feel this way either.

The travel bug has got Lee again, and we are moving -- building a log cabin, actually, out in the country. We have decided to change jobs, too. We have set new career goals for ourselves, now that the girls are older. Last month, we took a day off from work to go to the new school that the girls will attend. This is a big decision. We visited the preschool class for developmentally delayed children to see what it was like and we weren't happy with it. No one seems to talk in that class, and Amanda needs lots of talking. Amanda now has started to say a few words, so it's all the more important for her to be with kids who talk a lot. I hope we can work out some way to include Amanda in one of the regular kindergarten classes, too. Maybe just once a week to start.

Amanda's IFSP is not up-to-date and no one has offered to help me with this transition to another school. The school district will probably fight me on the issue of inclusion, but I think she belongs in both a special education class and a regular education setting. If the school district fights me, I'm not taking any garbage from them. We have a right to be there; we shouldn't have to fight. We should just be able to sign her up, have a meeting with the EI staff at her old program, and take the new school copies of her records and evaluations.

Lee and I know what we want as transition goals for Amanda. We want her transition plan to include talking on the telephone to her grandparents; pointing and then naming food before we give it to her; and acceptance by Jess and her friends, so they'll let her play with them. We want to take a family vacation, and she needs to be able to listen and obey commands much better before we can do a trip with her. We have more goals, but that gives you an idea of the real life concerns we have.

Early Intervention Specialist: Amanda really enjoys her present integrated program. The kids in the class get along well, and she is a very important member of this class. Amanda has multiple handicaps that really interfere with her ability to play with other children or pay attention to the group. She has hard-to-control outbursts and other noisy behaviors that interfere with her ability to learn. She is non-verbal, from a testing point of view, and receives speech therapy, occupational therapy, and physical therapy in the classroom.

I think that both of Amanda's parents are having a very difficult time accepting the extent of her disabilities. I am interested in getting Amanda some form of augmented communication, but I don't think that Amanda's parents are very receptive to the idea. Their expectations are different than ours, that's for sure. But, I have to say that I now realize that the Brown family's previous expectations and goals have largely been accomplished. Because of that, before I call a meeting to review Amanda's IFSP plan and write a special plan for transition services, I need to start listening to their goals, rather than just my own.

The Brown Family goals, as they see them:

The Brown Family wants professionals who listen and provide accurate information to them about their rights and services. Elaina and Lee want to collaborate with professionals in order to make practical transition decisions that affect their child's next learning environment.