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Raising A Profoundly Retarded Child, Part One

As I adopted my profoundly retarded children, I searched long and hard for something to read, to help me learn how to best help and mother them. I did not find a single thing. So I learned everything the slow way; from doctors and teachers and the children themselves, one child at a time. How I wish there had been anything written to help me learn more about how to care for them. It would have been fun and fascinating. So I wrote this, to share with others. I briefly cover the following subjects: eating, tube feeding, diapers, discomfort, dangers, time, bathing, lifting, screaming, sickness, seizures, playing, clinic visits, priorities, your other children, school, respite care, and a summary.

This article is specifically concerning children who cannot run. Children who are profoundly retarded, and who can run, can be infinitely more difficult to care for.

 GETTING THROUGH THE GRIEF  There is one main difference between people who are miserable with their profoundly retarded child, and people who are not. The people who are, are still grieving over the child he might have been. The child they expected is gone. They have to cope with that terrible loss, at the same time as learning to take care of the little one who did come, and who seems like a changeling. There is much grief to work through. I experienced this only one time, with my precious daughter Misty.

Of course, most of the time, when you adopt a child with profound retardation, you asked for this child, specifically. So while there might be some frustration, and a learning process, there is no grief, only joy.

 THE KEY TO HAPPINESS The people who are happy with their child, while still coping with the grief that will likely never completely leave, have accepted their child for who they are. They have left almost all expectations behind, and love the child for who they are today. If the child progresses, that will be wonderful. If he doesn't, he is loved anyway.

 EATING   At first, the only real problems are in whether the newborn baby can suck normally. Of course, if he is critically ill, that is another story. But plain old feeding a child who has great trouble eating, can envelop a whole life. In the old days, which I am old enough to have seen, a child who couldn't eat, just wasted away. Many times they died before they wasted away, from choking to death. When they died, emaciated, it was expected, and not surprising. I saw it again and again in the institution where I worked, and later, continued to visit. But now, no child needs to waste away, unless their digestive system does not work at all, and even a jejunal tube won't help. But that is extremely rare in full term babies, even with all kinds of disabilities. Every baby who can eat, should eat.

 TUBE FEEDING   But if the little one hasn't learned to eat successfully, as the months go by, and life becomes a struggle, I think a tube should be considered. The time spent on scraping food back into a choking, tongue thrusting mouth that cannot work right, could be spent so much better on cuddling that same child, and playing with him. Particularly if the child hates eating, and throws up often after being fed, so that all that time is wasted for both of you, like my little Adam eating by mouth may not be even good for him. If a child gets aspirate pneumonia from inhaling droplets of food while eating, a gastrostomy will almost certainly extend his life expectancy. A regular gastrostomy tube is easily surgically implanted, and is very easy to care for. If it comes out later, a parent can put a new one in easily. More easily than an earring. The nutrition the child needs, can easily be fed through the tube, and nice tasting foods that the child enjoys, can be given by mouth. If the child has great trouble digesting, and needs a slow drip feeding pump, that is okay. It can go all night, leaving hours free part of the day. If eating by mouth is impossible, that is okay too, much as it sounds foreign to those of us who enjoy eating. The main thing, in my book, is for my child to be as healthy as possible, and as happy as possible. I say these separately, though the two are closely interrelated. To be healthy, and feel well, is fairly necessary, for a child to be happy.

 Recently, a lady wrote me and said she did not know what a tube looked like. I appreciated that. It's one more thing I can offer, here. So I went to my children, and took some pictures. Twenty-eight year old Caressa's tube, twenty-one year old Joey's tube. Their scars are from their infant and early childhood surgeries called fundalplications, trying to solve their reflux problems. These are Foley catheters in their stomachs, being used for feedings:

 Here are two pictures comparing a Foley, and a PEG tube. Keep in mind that these tubes are the sizes for adults. Preemies up to children's, are ever so much smaller. The smallest I have used has been a 5fr. That is smaller than most regular hospitals even carry. It was an NG tube. The largest I have used was for my daughter Emily, who needed a size 26fr.

 The balloon at the end, is expanded with water inside the stomach, so the tube can't fall out. These particular ones are designed to allow for 30ccs of water to fill the balloon. This is what they look like with 30ccs. (5ccs equals one teaspoon.)

 Here they are, with only 15 ccs of water, which is the way I fill them, with my particular two children.

 The flat thing on the PEG tube can move, depending on how large the person is, and is designed to lie against the abdomen, supposedly to keep the balloon in the right place inside the stomach. The three things on the other end are as follows: one is where you insert the water to blow up the balloon. One is designed to put in medicine, and one is to put in the feedings. I personally don't like them. When Joey came home from the nursing home with this one, I promptly took it out, and put in a Foley catheter. (The name of the ones they have in them in the pictures.) I like Foleys better, for personal reasons. Caressa was fond of pulling the little plug of her PEG tube, and letting her feedings drain out. Also, when I had to work that close to her tummy, she would grab my hands, the feedings, push them away, spill them, and make the job a pain in the neck. Joey is also a grabber, though not as quick or skillful, and if I'm working that close to his tummy, he grabs it too. I prefer to quickly attach another tube to their Foleys when I'm feeding, with a 60cc syringe on the end. I can pour in their medicines, and feedings, out of their reach, talking to them all the while. Here is the tube and syringe style I like for feeding:

 Here is the way I put in medicines, with a little 5cc syringe (no needles, of course):

 PEG tubes are made of silicone, and the tiny plugs are very slippery. (There are silicone Foleys too, for people who are allergic to everything else, and our Foleys are silicone coated.) When little ones have a Foley, I keep their position secure with a little pink tape bridge, that the hospital taught me. This keeps the tube from sucking in, and the balloon from blocking the bottom of the stomach, which obviously prevents food from going on through. (Don't worry, I do not believe it is possible for the end to suck in. I've seen a tube suck in to that point, but the twin ends were still sticking out, too large to squeeze together through that opening.) With my adults, I just check the length before feeding, which is easy when you have it memorized, in relationship with their shoulders. With the Foley, I can tuck the end in a child's pants, so they can't see and play with it; and use any kind of plug I want. Several different plugs are available. Even Caressa cannot unplug these plugs. The tube can be pulled out by accident, like if you are lifting the child in or out of a wheelchair, and don't notice that the tube is stuck. This is still not dangerous, as long as the site is well healed. My children are adults, so their sites have been healed for decades. You just put in another. I can't even remember, the last time this happened to me. Probably twenty years. A mother soon learns to tuck in, and keep a close eye on the tube, while lifting the child, as though it were another arm or leg she doesn't want to get caught on something.) Watch the end of the tube, that it doesn't get under your child, lying down, and cause a pressure sore. All the mothers I personally know, whose children are tube-fed, put medicines into the same place the feedings are put, and flush with water afterwards, to make sure everything got in to the stomach, leaving the tube clean; which everyone does anyway. But PEG tubes are very popular. For many children, it must work well, to have a short "tail," instead of a longer "tail" to keep track of. Not all children are as mischievous as mine! So there you go! Different tubes for different children. There are other options as well, of course.

 Tubes are very simple, and an enormous blessing for the children involved! (And their parents.) I love them. They have helped my children live longer, happier, healthier, easier lives. Tubes are our friends. That is why I especially chose to adopt children with tubes. I enjoy caring for tubes, and also, children with tubes have less of a chance to get adopted, and have a forever family of their very own, and know, and enjoy being truly loved. To learn how to love in return. To be, like other children, a beloved daughter or a son, NOT a "patient, client, or resident."

 DIAPERS   Diapering will remain constant through the years. It could be looked on as a real chore, and sometimes it is. But our own body functions are also a chore. (Life is full of chores. Dealing with difficult people is a chore. Having a critical boss is a chore.) It's true, changing the poopy diaper of a child who has developed pubic hair is not my particular choice of a good time! When someone finally suggested that I shave the hair off, my life got easier. A much better situation. One thing I always do, once my children get older, and longer, and sometimes more spastic, is change them by rolling them from side to side. Then, there is not a strain on my back, nor a strain on their sometimes stiff legs. Besides, trying to raise two long legs waving in the air is not exactly easy! But rolling someone to the side, tucking the diaper under, then rolling them to the other side, and pulling the rest of the diaper out smoothly is not a physically difficult job. One other thing is having the bed at the right height. I keep the beds on six inch sturdy things designed for raising beds up, that you can buy through catalogs for elderly people. These raise the bed exactly right for me, so I don't have to lean over to work, which stresses my back. I often put music on that I enjoy, when I go to change diapers. Feeding your mind while doing boring things, really helps. (I turn on music to do dishes, too.)

 DISCOMFORT IS A SIGNAL   Watching a child's behavior is the best way to tell is something is wrong. Constipation is one culprit. Because these children don't move much, their bowels often don't either. Yet he cannot tell you what hurts. If he frets, and seems unhappy, the first place to look is comfort. Inner and outer. Is he digesting as well as usual? Has it been several days since he had a bowel movement? Maybe it's time for some stool softener, or suppository. In case of an older girl, maybe it's time for menstrual cramps. Maybe it's time to melt a couple of Pamprin, and put them down the tube. Does he have any red spots on his skin, from lying or sitting too long on a bump of clothing? Keep a close eye on them before they turn into something worse. The sooner these are taken care of, the better. Decubiti are sores no one should ever have to have. Then there are always those odd things to think of as possibilities - nausea, headache, muscle spasm or cramp, toothache, a hand or foot is stuck ... you know. One particular problem is that spastic feet tend to go with difficulty into shoes. A toe can bend under, and get put in the shoe that way, and no one knows. I learned this the hard way too! In fact, I became a real lover of slipper-socks, any kind of socks that won't immediately slide off, (and moccasins, though they DO come off.) Actually, anything I can slip my fingers in with the child's foot, and make certain no toes are bent under.

 DANGERS   Be careful pushing your child around corners, unless his feet are strapped down, and hands are in sight! Corners are dangerous for feet and hands. They can get caught, and break. ALWAYS strap your child's wheelchair down in the van, even if you are only going to drive one block. And NEVER leave your child in the tub alone even for a second, and even if your child cannot turn over! What if they have their first seizure ever, that moment, and drown? ALWAYS pull up the crib side if you're leaving the room, even for a minute, even if your child can't roll over. I've had some of mine squiggle in the most unexpected ways, to the edge of the bed!

 A SIMPLE MATTER OF TIME   Every child takes time. Caring for a child like this is not difficult. It takes a lot less time to check a child's skin, and watch his behavior changes, than it takes to drive a child to a ball game, or pick him up from a slumber party. It takes less time to cuddle and rock a child, than it does to listen to hours of talk. Just as each parent has a different personality, each enjoys different parts of parenthood. One will just love the ball games. (Not me.) One will enjoy having a group of giggling girls over for a sleep over. (I loved the sleep-overs.) One parent will enjoy tiny babies more than toddlers. Another will enjoy toddlers more than tiny babies. I loved them at all ages. I had one friend who did not enjoy her children much until they could walk. The day they turned one year old, she never carried them again. From then on, she made them walk. No more bottles. It was big girl or boy time. And she began to enjoy them. Needless to say, this friend did not understand at all, why I would want to adopt a baby who was always going to be a baby! She faded out of my life eventually. My children were boring to her. I had another friend who loved her babies passionately, until they could walk. From then on, she didn't enjoy them as much. She understood me much better.

 BATHING   Bathing has been a challenge, with my older children. When it became difficult to scoop Misty off the bottom of the tub, I had a carpenter install a mobile home sized tub at waist height, over the back bathroom tub. It could be folded up against the wall if I wanted to, but I hardly ever did. I gave my children bunk-tub baths. Normal, bouncy little ones in the bottom tub, a helpless little one in the top tub. I kept a tape deck in the bathroom, on a dresser, and would sit in there listening to music while they all bathed. I could keep them all safe at once, and we all had an enjoyable time. Later, the state bought us a wonderful shower trolley, and things were much easier from then on!

 With my daughter Caressa we have discovered a new and lovely way to bathe, just in the past year! I found a big, round rubber tub designed for feeding water to farm animals, at the feed store. Twenty dollars, and my daughter had a whole new world opened up to her! I put it on her bedroom floor, and she sits cross-legged in it. She is absolutely crazy about water, but never could spend a lot of time in the tub, because she had to be so closely watched, for safety. Even though I believe she cannot drown in this tub, I keep a close eye on her. Never assume that a child or helpless adult cannot drown, no matter how safe they look. I have known accidental bathtub drownings of beloved disabled children, to happen to two close friends in my life. She sits very still, and watches the water move when she does. She pats the surface of the water very gently with her hands. Only when she sits up and starts splashing, do I get her out! That's my signal, because I don't want a big mess! Every morning, she watches me pour in those two buckets of warm bubbly water, with a big smile! She knows!

 LIFTING   Lifting becomes harder, of course, with age. (Yours and the child's.) But unless you have a back problem, your muscles develop along with your child, and it isn't that hard. I can lift my hundred pound daughter Caressa in and out of bed, in and out of her chair, and on and off the floor. But I don't carry her outside any more, I roll her in her chair. I could carry her out, in case of fire, but I'm really not into inviting aches and pains that I don't need! Not carrying her any more is only a minor nuisance. When I take her somewhere, I just have to plan things so I have time to put her in her chair, roll her to the van, and put her in it.

 If she had grown to be a bigger lady, or if I had back problems, I would have to use a Hoyer lift. This is not difficult, just time consuming. Instead of whisking a child from bed to chair, you have to tuck the sling beneath them in the bed, wheel the lift over, hook the sling to the lift, and lift! It's hydraulic, so there's nothing hard about it. Then, push the lift over to the chair, and lower her into it. It's no big deal. It's just a matter of being patient, and adjusting your mind to know that getting this child out of bed, and into her chair is going to take upwards of fifteen minutes. Turn on some music that you enjoy, to help entertain your mind! Your child may enjoy it too.

The Rest Of The Story