Mother: Ava, age 46
Child: Alex, age 3
Three grown daughters
Ava talks: Alex is my challenge in life; my handful! Even on good days, I have the hardest time keeping him focused.
Alex has Prader-Willi Syndrome, and, while his medication helps keep him from doing some of the more bizarre behaviors, like eating the stuffing out of the sofa, he still has a lot of problems. His speech is intermittent, Alex can't tell me many things, but he often will use words to identify something.
Most of the time he points and grunts. He can't put puzzles together, he doesn't like to play with blocks (he does like to throw them), and when anyone in the family sits down to play with him he pretends I'm not there.
He's real active though. He spins around in circles, sometimes he gets so dizzy he falls over. He keeps on with this behavior even when I ask him to stop, or when I yell at him. If I grab hold of him to make him stop he gets real mad, kicks at me and throws a tantrum. I just want to spank him when he does this.
Alex has left bruises on me from his kicking. He climbs on the furniture, over everything, and won't stop that either. When we are outside he gets it into his head to run, sometimes I think he would just keep going until he gets to the ends of the earth. In summers, I had a college student who did nothing but take him on walks, doing research.
Alex pretty much ignores other kids in the toddler program. I'm glad the university area has this special school for kids like him. I take him there every morning and he stays about three hours.
They try to teach him things, but he tantrums for them too. It's hard for them to show me that he's learned anything at all, but having him go there is a lot better than keeping him at home.
Maybe he's learning that other adults are in charge and I'm not the only one who tries to stop him. Besides. I need the help with him. I work full time, I'm a nurse, and sometimes I have to work double shifts if someone is sick or on vacation.
His dad, Jake works every day as well. Lucky for us our daughters help out.
The girls are able to manage him a little better than I can, they seem to communicate a little better with him. They take him places for us and try to let him do some normal kid things. I know he's a holy terror for them, but they don't complain very much. Jake and I don't have the energy to take him places.
I'm so tired after work. You see, we were older when we had Alex. We thought we had the time and the energy to raise another child, but not a child with all these problems. Nothing in my life prepared me for this. We raised three, normal, healthy, good kids and then we had Alex.
When Alex is being horrible I give him food to try to quiet him. It works for a while. He eats and then he ruminates and chews it again. At least he's quiet and not running or spinning when he does this. It gives me some peace, for a while at least. I know I shouldn't do this, his doctors and the other professionals tell me not to, but it works, and I don't know what else to do.
When I give him the food, he stuffs himself with it. I've been told that children with his condition can't control their food intake. I've read about 8 year olds with this problem who have grown so huge they've gone into cardiac arrest. Alex isn't fat though, and he's so active that I tell myself it's OK. Everyone tells me I'm teaching him something that will harm him later.
My other real worry is about Alex's future. I don't think he will have a normal life, and I won't always be here to take care of him. I want some time for Jake and me too. We've worked hard all our lives and deserve to have some time to ourselves as we get older. Alex is going to need all of our resources for a long time to come. I don't think this is fair, but then, he is our responsibility, and we love him--he's ours.
Jake talks: Alex is "all boy," sometimes too much so. He's aggressive and active. He ignores the things around him and runs head long into trouble. Alex's behavior is nerve wracking. I don't know how my wife stops herself from hitting him. I'm sure she wants to when he kicks her and has a tantrum. Ava says she knows this won't work. Alex has two, maybe three tantrums every day. These seem to be the result of Ava trying to get him to stop doing something, like spinning or climbing. He gets violent when adults try to stop him. I used to try to stop him, too, but I get so angry when he starts kicking that I'm afraid I might hurt him.
One thing that Alex does that drives me crazy is refusing to get up, or refusing to sit down when he's told. We used to take him to church with us but he would stand up and move about when everyone was sitting, or he would sit and make noises when everyone was standing. One of us always had to take him outside and stay in the car when he did these things. We can't take him anywhere.
He won't sit and watch cartoons or a movie on the VCR, he won't play with toys, even when one of us sits and plays with him. So Ava feeds him all the time. She says this keeps him quiet and settled down so she can do her housework or get her rest. She says she's careful about how much she gives him so he won't get too fat. I'm not so sure this is the right way to handle his problems, but we've talked about it, and we don't know what else to do.
I've read some of the information the professionals have given us about Alex's problem. The future can be bleak for kids like him. He'll always be delayed and won't learn the way other kids learn. He might develop very serious health problems as he gets older and he could die if his food intake isn't controlled. This is a big worry for me.
Even though Ava's a nurse, her reliance on food to control Alex might cause a deadly problem for him in the future. If this happens we'll blame ourselves. We need to learn some other ways to deal with him, but the professionals have not found anything that seems to work. With both of us working all the time, we have a hard time sticking to a plan when we make one. Ava is tired a lot, especially when she works a double shift. She resorts to the food to control him because it's quick and easier for her. She will have to find another solution that's just as simple before we'll be able to manage his behavior.
At least we have help from our daughters. We would never have peace if they didn't take him places, watch him for us, and give us time to ourselves. Alex seems to like them as much as he likes anyone. I don't know why, but he responds differently to them. I'm sure he does the same types of things with them that he does at home, the spinning and running, but it doesn't seem to bother them that much. They don't complain about it, anyway.
Alex's pre-school teacher and family support worker talks: What a busy boy Alex is! He takes ritalin to reduce his hyperactivity and is on growth hormones to help him have a normal height in the hope that this will prevent him from becoming morbidly obese when he's a little older. When he was a baby he was failure to thrive and then he was diagnosed with Prader-Willi Syndrome.
Alex is driven to behave the way he does. He focuses on one thing at a time and really gets upset when someone interferes in what he is doing. He feels an intense rage and has a tantrum. He will kick and scream, and sometimes he hurts people when this happens. His mother has had bruises on her legs from his kicking her. Alex likes to spin and run, and cannot stop himself. He'll fall down or hit a wall. He cries and shows distress when this happens, but he can be calmed by engaging him in an activity, like playing in water.
Alex enjoys water play. He'll fill up containers and dump them out repeatedly. He seems pretty intensely involved in this activity and again, when he's interrupted, he gets mad. However, he can be redirected to another activity, like music and movement. It seems as if he just wants to do the same thing over and over again, forever.
At school, Alex ignores the other kids. He is attracted to the guinea pig and the rabbit. He can pet them and be gentle as long as an adult is right there watching him, and cueing him. He responds to a light touch on his hand if he gets rough with the animal, and resumes petting gently. He doesn't torment or hurt the animal, he just gets a little intense in the activity.
Alex is slowly learning to respond to cues. He will look at an adult, and sometimes he'll slow down or stop when the adult holds up one finger. He is not responsive to loud commands to "stop-that." It seems to stimulate him further and he perseveres in the activity. This can then quickly escalate to interference and another tantrum. At school, Alex takes a snack with the other kids. He does not get food as a reward or punishment. We have to watch him to prevent him from eating up other kids unfinished food. We supervise closely and make sure that there are no left-overs lying around, and carefully dispose of them in the garbage outside the room.
We've found that Alex listens when he is given information about transitions, and is better able to switch activities. He likes to know what to expect, just like any other kid. He doesn't regard this as an interference, and he is better prepared to move on. While he is learning, it's slow going for Alex. It takes him a long time to master things, and he does have to repeat to learn a skill.
At home Alex is frustrated by his environment. Every time he turns around (literally) he's told to stop that or he is given food to eat. He respond to his parents frustrations by being even more frustrated himself. He can't do the things he likes to do. He likes his sisters. They give individual attention and try to do things with him that he enjoys. They speak softly to him, and touch him gently. They have the time and energy to watch him closely when they take him places. He can be a terror when he's with them, but sometimes they can get him settled by cueing him and touching him without grabbing.