Future Reflections Summer 1991

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by Jude Lincicome

From the Editor: When Jude Lincicome came to her first National Federation of the Blind function with her three preschoolers in tow, everyone who met her agreed on one thing: she had a great bunch of kids! Sarah was so bright and personable, Danny so cute and polite, and you could just hear the wheels turning in Jeremy's head as he took everything in. They were curious, alert, and just sparkled with the joy of living. The paraphernalia which marked these kids as physically disabled (motorized wheelchairs, leg braces, etc.) quickly receded to mere background significance within a few moments after meeting these personable children.

The woman who can take credit for these lovely children is Jude Lincicome. Jude is the single adoptive/foster parent of seven children, all multiply handicapped and medically fragile. She currently has three children at home, including three-year-old Jeremy, who is blind. (By the time this article is published, she will have added one more child to her family.) Jeremy, like her other children, doesn't have just one disability (the blindness). He was a "preemie" whose multiple problems began when he was three days old. He had an intestinal perforation and immediate surgery was required in which about one third of the intestine was removed. He had an ileostomy for many months. Later, he developed a lung disease (broncho-pulmonary dysplasia and reactive airway diseaseþwhich, Jude says, is something like having continuous asthma) and suffered intra-ventricular bleeding on both sides of the brain. As a consequence of the bleeding, he has mild cerebral palsy which has weakened the left side of his body. In addition to the retinopathy of prematurity (the major cause of his blindness), he has glaucoma in his left eye.

Of his development, Jude says, "For a child that was supposed to be a vegetable all his life [because of the intra-ventricular bleeding] he's turned out to be pretty much on age level." Eating was a problem at first because of difficulties caused by the broncho-pulmonary dysplasia/reactive airway disease/cerebral palsy combination of conditions. However, Jude and Jeremy persisted, and today he can scoop with a spoon, feed himself, and handle a cup independently. Jude also expects Jeremy to master both cane travel and Braille. He is working on learning his shapes, loves to "read" along with his finger with mom as she reads to him, knows where to find the page number in a book (though he can't read it yet), and best of all, enjoys books and looks forward to learning to read. He will soon have a cane. So far, Jeremy is very mobile in his environment-walking to and from the bus on his own-and loves to run, Jude says. She is afraid, however, that if he does not get a cane soon that he will lose this momentum. The professionals have resisted, but Jude is persistent and is confident that he will have cane instruction soon.

Busy as she is with her own children, Jude finds time to advocate for other parents who call on her for information and advice and also to help find adoptive homes for disabled children who need a family. Because of her pediatric nursing background and her practical experience in mothering disabled, medically fragile children, she is also often called for consultation by hospital social workers, doctors, and nurses.

The following article is based on a speech Jude gave at a parents seminar sponsored by the Maryland Parents of Blind Children Division of the National Federation of the Blind. In it, Jude shares her very personal feelings and philosophy about raising multiply disabled, medically fragile children. She is plainspoken with strong opinions, and is not afraid to raise issues that others consider taboo. Here is "Jude's Kids."

Jude: Hi everybody, I'm real glad to be here. I think the first thing I want to share with you is that all of my children are adopted. I'm working on getting my seventh child, and she will be with us in probably about a month and a half. All of them have been multiply handicapped. The little boy sitting next to me is my most handicapped child right now. When I found him he was totally unable to do anything. He had never been expected to do anything and therefore he did nothing. He was thirteen months old. He could not hold his head up; he did not swallow; he did not reach for toys; he did not roll over. His eyes turned toward the bridge of his nose. His left arm and both legs were paralyzed, and he had no social smile. So I guess that's pretty much the picture of a child who is a slug. And literally, he was very slimy. He had yucky coming out of everywhere on his body. I guess because of that no one had even gotten him up in a rocking chair and rocked him.

Well, what you see now before you is a little boy who can count from one to ten (although his mouth doesn't work too well). He's extremely polite. Last weekend we had to take him to the hospital because he was in shunt failure. When the paramedics left-he was lying there almost unable to breathe-He said to them, "Thank you." He's a real special little fellow.

I think what I wanted to share with you most were a few little ideas about being a parent. I think I can qualify although I've never had any biological children. But then, I've had more children than most. I think that being a parent of a handicapped child is being an expert when all the professionals around you think that you're a mother. You know your child. You know exactly what your child can do and cannot do. And believe me, it's a whole lot more than what anybody else will want you to believe. I was told that this child here would never sit up-never sit up! [He is sitting next to her as she speaks.] I have another little girl out there who is in a motorized chair, but she can walk. I was told she would never sit up either, that she would be retarded. She's very bright. She is going to be mainstreamed as soon as she is old enough to go to school. She's been walking since she was about fifteen months old. I had to make her first braces because no one would let me have any. "She'll never walk," they said.

In the school system I am the expert at the ARD meeting for other children. Other parents call me and say "Come with me; I need some help." The professionals look at me and they say, "Wow, we really are lucky to have this lady here because we can really get some good stuff done for this child." But yet, I can go from one ARD meeting for someone else's child where I am the expert, into an ARD meeting for my own child (and the only thing that's changed is that I have eaten lunch) and I am stupid. I am a mother. I know not what I am talking about. My expectations for my child are totally unrealistic. Being the parent of a special needs child has an awful lot of implications that you would never think of such as: (and when I get finished I suspect that you guys will think that I've been peeking in your house) You get out of the shower before you're done and the soap's still on because your kid cried and you have to know what's going on. Or, you have to stop going to the bathroom-real quick, right? You have to miss a lot of work because your kid is sick and nobody else knows how to take care of him or her. You and your husband have planned for a long time to go somewhere, and all of a sudden you can't go because your kid doesn't look exactly right or your baby-sitter says "I'm sorry, but I have something else I need to do". And everybody else is going, but you're sitting at home. The friend that you had all your life, the one you shared all your intimate secrets with and who had so much in common with you, all of a sudden you're strangers. You do an awful lot of soul-searching, an awful lot of self-examination. You feel like you're banging your head against a blank wall. You're trying to figure out what is going on: "I don't understand this. Why am I so different? Why did all this happen to me?" You almost feel that you're growing another part to your body, and it's shaped like a kid, and it's attached, and you can't get it off. It goes with you when you wash the dishes. It goes with you into the bathroom. It goes with you to work. Even though it's not with you, it's there. Right? It invades your thinking, your planning, your work, your play, your body functions. You now have something added to your body, to your whole being.

Is it any wonder then that your spouse has no idea what you look like anymore? Does it stop you from talking to one another, because even he or she doesn't understand? That's a real big problem, people. We need to keep talking to one another. Talk about important things. Talk about how you don't like this, how you're not having very much fun at this party. Because believe me, your spouse isn't having very much fun at this party, either. Here's a biggy. You never thought you'd cry so much in your life. You have so many tears. Where do they all come from? They can't possibly come from me. I never cried like this before in my life! But you know the tears that you cry are not just tears of pain. Those tears will also become tears of joy. I have never in my life experienced the joys that I now know because of my children. Believe me, I know what the pain is because I had a doctor let one of my children die because he wouldn't recognize me as an expert. So I know the pain.

But being a parent of a special needs child and a multiply handicapped child is, I think, kind of like the metamorphosis of a butterfly. When you first discover that you are the parent of a special needs child, you feel like a caterpillar. You don't like to touch yourself. You don't like the way you look. You're sure you look yucky to everybody else. You feel like that caterpillar. But the thing is that you're eating up everything. You're learning everything. You're taking everything in. You're watching everything. You're probably reading everything you can find, right? You are slowly but surely making that caterpillar large, full, and soon it's going to go into that chrysalis. Something is going to click in your head and you'll say "This wasn't so bad after all." And you look at your child. You've been really, really working hard, and all of a sudden your child starts to blossom and meet your expectations. He or she starts to meet his own expectations. The people around you are doing a pretty good job. Do you know what's happening to you? You've come out of that cocoon and you're a full-blown butterfly. And believe me, I think you're a whole lot better person because you've gone through this with your child (this thing attached to your body, right?). Somehow you now know joy better than anybody else.

The eastern people in their religions have something called the yin yang. Has anybody heard of that? By golly, it is real. Because your pain is so intense, your ability to feel joy is multiplied ten-fold. That is the yin yang. Without that pain you would never be able to feel that joy, that euphoria over your kid's reaching for a toy for the first time. He didn't know it was there, but he had faith that it was there. He was right! Does that bring tears to your eyes? Do you remember that? I remember that. It's a very scary world, but it's also a very, very happy world. The joys that you feel are sparked by the very tiniest of things. Once, one of my sons was having difficulty in passing his urine. When he finally had a big diaper full of urine, I was ecstatic! If anybody had ever told me twenty years ago that I would be ecstatic over..., well, it's not something you can tell most of your friends.

I have a friend who has a child that was born with no brain. She has a brain stem, so that means the heart beats. She breathes. Somehow she can suck a little bit, but even that's going. She is blind, she is deaf. She doesn't have the front part of the brain which would allow her to feel any kind of pleasure. So she is a child that just lies there. That mother said the most outrageously wonderful thing to me. She said to me, "Jude, you will never, never know how blessed I am with this baby. She has taught me the real true meaning of love, of giving, of learning, of accepting, of cooperation, of communication." When you come to think of it guys, why are we here on this earth? Isn't that all it? Isn't that it? She learned that from her child with no brain. How many of us have ever felt like maybe somebody kind of did a dirty trick to us? But this lady feel genuinely and thoroughly blessed with her child who will never even smile at her; never reach for her; never give her anything but herself, for whatever that is.

We've been talking about pain and we've been talking about joy, but there's one other emotion that's very much present when you parent a special needs child. And it's not one that you need to keep around. You need to keep around joy for obvious reasons. You need to keep around pain, too, because without the pain you can't know the joy. But guilt is a very, very destructive emotion. It serves absolutely no purpose. But for some reason, we as human beings think we need to tuck it in our pocket, keep it, and treasure it. We think, "I must have done something for this to have happened. My husband had to have done something to make this happen. It's in my genes. God must be punishing me." Did you ever think any of those things? In the soul searching and the self-examination that I talked about before, you somehow don't come up with, "Wow, were you ever a neat lady!" or "Wow, you are some super man." You come up with, "I must have done something wrong." These feelings can be so damaging, especially in the way they affect your child. Because if you are guilty of something, then you have to somehow make it all right, right? You end up making it all right by saying "Oh, isn't he cute? Don't make him do that, he's crying. He doesn't want to do that today. Oh, go get it for him. Look at him. He's trying so hard." That, ladies and gentlemen, will be the one thing that will kill your child's chances. He's going to think that this world owes him something, but this world does not owe any of us anything. It will never give us anything that we don't take for ourselves.

So, take the guilt that you have. Look at it. Examine it. Do whatever it is that you need to understand it, and then throw it in the trash because that's where it belongs. To begin with, it doesn't make any difference whose fault it was or whether it was anybody's fault. Here you are. It is you and your child. The only way your children are going to perform those miracles that I know you can make them give is for you to accept yourself and accept your child for whatever and whoever you both are. I've performed three miracles so far, and I'm about ready for a fourth one because she's coming to live with us soon.

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