Developmental Disabilities

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Vision/Hearing

Morris Family Story

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Tom - 42 years old
Lydia - 40 years old
Thomas - 5 years old
Ricky - 26 months old

In this story, you will find these topics discussed: activity-based assessment, child development, developmental regression, health impairments, sensory integration, and visual impairment.

Lydia tells her story: Since Ricky was born, I've coped pretty well, but Tom hasn't. He never liked the interference of outside strangers in our lives and kinda left our early intervention program alone. Now he is required to be involved in observing and planning for Ricky, but he is having a really hard time with the professionals in the program, them telling us what to do all the time and telling us what Ricky needs.

Several of my family have visual problems -- glaucoma, near-sightedness, childhood stigmatism's, and one of my nieces has the same condition as Ricky -- cataracts which have to be removed, and probably will have to be removed a second time, when he gets older. Right now, Ricky has 20/200 vision, which means he can see at 20 feet what the rest of us see at 200 feet. Ricky also has delayed motor development, but he scoots around, pulls himself up, and even gets up on his knees a little to get from one place to the other.

The home situation has changed lately, because Ricky has started to lose some of the abilities he had three or four months ago. For example, a few months ago, he fed himself, crawled around the house playing with everything he could get his hands on. He would reach out for everything, and played a great game of hide and seek. He followed our voices, and laughed and talked really great for a toddler. "Beep, beep, I'm a jeep," he'd say, pretending to be a jeep truck, like the one in his pretend book.

Then, wham, all of a sudden Ricky stopped feeding himself. He'd drop his hands down like they didn't belong to him. He got real clingy, just like he was a year ago, when he was little. His therapist and his teacher are worried at school, too, because he stopped singing. He could sing when he was 15 months old, but now he won't sing. He won't feed himself and he won't play with his blocks, either. Ricky stopped turning on the light box that the Sight Center loaned us. This was his favorite thing to do, but now he screams and kicks, when I try to get him to play with it. He's anti-everything, and throws a tantrum like nobody's business.

Tom got mad and started spanking him and threatening -- you know, out of frustration. Ricky looked real scared, so we talked it over and Tom said he'd stop hitting -- he just wanted Ricky to progress and develop normally and have things back the way they were. You can't blame him for that. Thomas, Ricky's brother, never gets mad at him. I think they are special together, and I feel lucky to have both boys in my life. Thomas, not me, is the one who taught little Ricky how to count to five and build interesting constructions with sound-color blocks.

Until six months ago, life was not perfect because of Ricky's eye condition and his motor delays, but it was also a normal type of life, and fun. At that time, we decided to move from one side of town to the other to get closer to the best EI program around here. We just did it! It was a shock to Thomas, the older boy, and to me too, but we needed to live in a county that would get us more services, like state services for the visually and physically handicapped.

My husband's schedule is crazy, and we have had a lot of arguments lately, rather than enjoying our newer house. I think Ricky could be reacting to the move, too. He has stopped sleeping through the night. He doesn't sleep for more than a few hours each night.

Tom is so frustrated, he actually said Ricky was a devil going to hell, but I call him my "sensitive flower." One thing Tom gets so mad about is the hovering and smothering that the therapists and social workers do. These are nice good-hearted people, but they should think about the idea that even if a child has a bad disability, he's still a fun person and our whole life as a family doesn't have to revolve around blindness. The "disability" is really a series of situations -- some happy, some miserable and some that are crisis -- but it's not our whole life, twenty-four hours a day.

Tom: Since Ricky was born and went more or less blind, Lydia's folks treat us like we're lepers or worse. They don't know anyone else who went blind, and they think our situation is the worst thing in the world. I guess lots of people are like that. They can't get used to it.

I blame them for making me panic, because they act like the problem is even worse than it is. Lydia's mom keeps saying Ricky may be retarded or slow and how will he get along, when we die? I'm a machinist and have been on the same machine in three places since high school. I never think about when I die, and these relatives are driving me to the point of yelling and hitting the kids, which I never used to do.

One day I'm this nice guy and the next, my kid is sitting around like he forgot how to eat by himself, and I turn into a monster. He can't have forgotten everything he learned. I expect my son to learn new things, to behave, to do for himself. My goal for both boys is that they do everything for themselves and take responsibility.

The older one, Thomas, has asthma and bad breathing problems that he inherited, and I have bad lungs from smoking, so there are other health problems here, in addition to Ricky's. But I listen to the therapists and the teachers, and I've learned a lot about how Ricky uses the small amount of vision he does have -- they say he "place-holds." When he wants to locate objects in any direction or when people talk to him or tell him to pick something up, he touches the object, then places his hands on it, then "places" the object up to his face or mouth and "holds" the object in his mind, by saying it or playing with it.

Ricky has excellent speech, that is, the ability to talk, talk, talk. He needs to talk. It helps him lock in the information and remember it. His language is developing like a fast moving freight train (we both love trains). My wife doesn't even give me credit for having learned all this information about Ricky's condition. But I pay attention to the people who work with our family. I don't always agree with them, but I listen. They are the ones who don't listen. That's the bottom line.

We have a toddler who is hard to handle now. He is slowing down, sort of reversing direction, and his mother and I are fighting over it. We need professionals in our lives, but we don't need the controlling way they are so-called "helping."

Early Intervention Specialist: Ricky's mother is getting very bossy and picky with us these days. She wants to know the reasons why Ricky's progress is slowing down.

The interdisciplinary team I work with is thinking of having a family meeting to try to explain that the regression the Morris family is seeing in their son may be caused by the move from one house to another. Moving is usually traumatic for most children, especially when they've learned to get around in familiar settings.

There is another explanation, too. We often see toddlers with visual impairments lose their intentionality and direct approach to objects when they are busy learning language or mobility skills. Vision loss during the first year of life doesn't interfere much with major milestones. There are delays in search behaviors, but the desire to touch, look toward sounds or sights, and hear surrounding sounds is intact and they occur predictably, even in blind babies.

As visually impaired toddlers develop upright mobility and intentionality (purposefulness) they become thinkers as well as feelers. They are aware of their actions; they start thinking about themselves and realizing that there is something missing in their mental picture of the world. If nobody explains to them that they are so clever to have learned to hold a spoon and that now there are even more interesting things to think about doing with a spoon, they lose the intentionality and stop doing the behavior.

The Morris Family goals, as they see them:

The Morris Family wants to understand why their son has regressed and is not progressing as he was several months ago. They need professionals to help them develop a plan that will help their child overcome setbacks stemming from changes in their family circumstances. Lydia wants to work with professionals who listen and provide her with knowledge of child development and teach her play activities to do at home with her son, so that further problems can be prevented and he can get back on track.

Ask Dr. Susan