© 2004 Rosemary J. Gwaltney
PLAYING One thing I enjoyed a great deal, and still do, was finding toys and activities that would bring a smile to my child's face. I tried everything, to encourage my children to reach out their hand, and touch something. If they couldn't do that, I brought the toys to their mouth, so they could explore it with their tongue. My son Joshua had a tremendous aversion to eating by mouth; but he would happily lick a toy for long periods of time. Play is important. I bought a waterbed for my children who could not roll over, or sit up, and hung all kinds of things above them. Every movement made the warm bed move, and if my child raised an arm, he or she would bump the hanging bells, toys, and such, and make a lovely sound. It took very little action, to give these children huge bright smiles of joy! Another thing almost all of them enjoyed was having me tie a helium balloon onto their wrist, so they could pull it down by a jerk of the arm, and watch it float back up. This was a great occupation! Buying a package of shower curtain rings, and attaching them to the crib, or hospital bed rails, can be great fun for a child who enjoys fingering them, making them rattle and move. My son Zachary could not play in any way, but he loved people to stroke his cheeks. Anyone at all, who stroked his little round cheeks, would get a smile. The longer the person stroked, the bigger his smile got! We got the cutest pictures this way! This was play, for Zachy. My daughter Tiffany particularly enjoyed being put on her tummy on a prone board, and having her hands dangle in a dishpan of warm water. This encouraged her to move her hands, to make the water move. At the same time as all of these things are play, they are also physical therapy, occupational therapy, and education.
I wish the Baby Einstein videos had been invented when my helpless ones were little. But even now, my three adult children who are profoundly retarded, and living at home, Cassie, Caressa, and Joey, enjoy them very much. It has been very hard to find any videos that would catch their eye. None of them can really speak, so a story line is incomprehensible to them. Therefore, they have not the slightest interest in cartoons, even as simple and cute as Winnie the Pooh. But infant videos are another story! I wish every little one who cannot move around and play, could have a copy of Baby Mozart!
My son Joshua loved MTV. It had just newly appeared on cable television when he was two, three, and four, and he thought those made-up, wild faces were just for him when they came up close to the screen! He would giggle so hard, that I put a little TV right by his crib, just for him, so he could enjoy that crazy program to the fullest! Now we live in the mountains, and there is no MTV, but the Baby Einstein DVDs and videos are a vast improvement, in my book!
CLINIC VISITS Some children have problems like Spina Bifida, that require lots of time in clinic., seeing many doctors, therapists, etc. If you have to spend lots of time in clinic, because your child's medical condition requires it, think up things to do, to bring with you. Perhaps a friend could come along. Failing that, a good book? Maybe you could write a book, or learn to knit or crochet. There must be a way to make those long hours seem less boring. I suppose you could even talk on your cell phone nowadays. It can also be a real chore to bring enough things (hopefully) to keep your little one happy for hours and hours sitting in one place. Even with a child who can't move around, this is not necessarily THEIR favorite way to spend a day either! I always brought along a list of the questions I had, so I wouldn't forget a single one; and it was good to be able to ask professionals for answers. Bringing a list, and a notebook was a good way to make the visits as brief as possible, and never go home and suddenly remember something I had wanted to ask, and forgot!
PRIORITIES The way to a happy and successful motherhood of any child, is to keep your priorities in order. The most important ones first, and if you don't have time for the least important ones, leave them. Begin with your husband and children, but remember yourself. You are the hub of the wheel. Stay strong. Cooking and housework must be done, but cooking can be simplified, and housework can be skimped on, if necessary. Cut out all unnecessary outside stresses. Accept only outside pleasures. If someone wants you to do something and it is not a pleasure, it is a stress. Treat yourself with kindness, as you do your family. A happy, relaxed, loving mother is a good mother.
YOUR OTHER CHILDREN It goes without saying, that your other children need their fair share of time and attention. This should not be any problem. I blended my children's needs by changing diapers, tube feeding, bathing, or rocking the one who could not talk, while listening to one who needed to talk a lot. A talkative child, and a child who cannot talk are a perfect combination, I think! My helpless children went along with us, on picnics, camping, all kinds of places. The only things I could not do any more with a child in a wheelchair was hike and swim. It was my choice. I could have hired a sitter. Also, churches with many steps... but that's another story. By the way, your other children will be a great delight to your helpless ones. Remember, they don't know they are missing anything. So watching their brothers and sisters run around, talk, laugh, and holler, is pure fun for them. Better than watching a circus! And when their brothers and sisters push their wheelchairs around the house, they will be doubled up with laughter!
Some of your other children will likely take an active interest in this child, and some won't. I never asked my children to change or feed their sibling once he or she grew older, if they didn't want to. They helped me in other ways instead. The children who really loved their helpless siblings, and wanted to actively help in their care were great fun. The others were too. All children are different, and your helpless one should not become any kind of a burden on the others. When I asked my older daughter Noelle to babysit, I paid her well. It was only fair and right. You don't want your other children to tell you in adulthood, that they felt enslaved to their sibling. You want them to tell you they respected you for loving the child, and for letting them love their sibling just as it came naturally. I never had a single child who ever told me they wished they had not had the siblings they had, even the ones who died. There was no regret. We gave a home to children who needed a home. We gave them love. It was a joy and a privilege for us all.
FRIENDS If you adopt a child like this, you will probably find yourself gravitating toward other families who have also adopted children like this. I have many friends who have large families, and who have adopted several profoundly retarded children each. Over the years, it has become clear to all of us, that profoundly retarded children often don't live to adulthood. Each family that I have known, who have adopted several such children, has lost at least one. One celebrated family I read about recently, that has adopted 35 disabled and medically fragile children, has lost 11. I admire their courage, and love. If you let the fear of death stop you from loving, you lose, and a child who could have known your love, loses.
SCHOOL You can choose which kind of schooling you want your child to have. You can send him to public school, or you can home school him. I have done this both ways. My children have had some truly wonderful teachers. And my children have enjoyed many rich, quality years in home schooling.
MONEY It should not be embarassing or negative to mention money, though most people are wary of talking about it, for the paranoia that someone might adopt a disabled child for money. I know of NO ONE who EVER has done that. No one would commit to love a profoundly retarded child for the rest of their child’s life, except for the love of a child. No one would do it for money, even if it was a lot of money, and it is not. But such a child does receive adoption support, or S.S.I., and complete medical coverage. Adoption support and medical coverage is usually available to families, without regard to the parents' income. S.S.I. and complete medical coverage is available for each child if the family income is small enough. I don't mind if you write and ask me about details and amounts. I'd be glad to share what I know, though I only know about a few states. Money is, unfortunately, but realistically, a necessary commodity. We can't live without it. At eighteen years old, a disabled child will receive S.S.I. and 100% medical coverage for the rest of their lives as an adult, no matter what the parents’ income is. In my case, this help made it possible for me to be able to afford to adopt and raise disabled children. To stay home with my children, and make motherhood my entire life career. My family has been, and continues to be the joy of my life, as you can tell!
RESPITE CARE A mother of a profoundly retarded child will need a babysitter, and it may be hard to find one. There are places that you can't take a wheelchair. At first, with just one child in a chair, we took her with us everywhere. As time went on, and we had several, I began to hire my grown children to babysit, while I took my younger children places by themselves. Although I rarely took advantage of it, I believe all states provide respite care for families with severely handicapped children. Your local Department of Human Resources should be able to point you in the right direction. Also, if you are the kind of person who wants or needs help in the home, there is in-home nursing care, and help available. I never did need or want that, but it's great that it is out there for people who do.
SCREAMING Screaming for no apparent reason occasionally is caused by brain damage. I'm not talking here about symptoms of shunt failure. If you have a little one who does not have a shunt, and who screams, and can't be comforted, ask for medicine! There is medicine available to calm a child like this, that does not compromise their breathing. ASK for it! Be nice, and don't make enemies of doctors, but DEMAND it, if you have to, for your child's sake. If you have a doctor who does not believe in medicating, dump him, and find one who has a kind heart. Why should your child have to live in misery? He shouldn't. Why should you and your family have to helplessly watch his misery? You shouldn't! One of the most powerful motherly instincts is to comfort her baby when he cries. If you have a baby whom you cannot comfort in normal ways, get him comfort with medicine. It will not change him into someone he isn't. It will not sedate him, unless he's getting too much. It cannot hurt him.
My daughter Caressa was not a screamer. I adopted her at eleven years old. She was a happy girl until she reached fourteen. All of a sudden, she began to bellow in full-throated screams most of the day, and the night too! It sounded like a woman being murdered! It took me nearly a year to find a doctor who was willing to give her medicine. Desipramine was all it took. For a long time she needed a sleeping medicine called Amitryptaline too, but not any more. She still needs Desipramine, but not nearly as much. The doctor never did try to guess what made her do that. But to me, it was PMS. It was around the onset of her periods, and it seemed to me, that her hormones just overwhelmed her. At any rate, after she got medicine, she almost immediately reverted to her happy old self! Why did she have to suffer for a year? Was I not assertive enough, in searching for help? Well, I have learned through these experiences. Caressa is twenty-eight now, and hasn't been a screamer ever since. It was just that time of her life.
My son Joey has had a screaming problem all his life. He has always been high strung, and nervous. It didn't take too much time after I adopted him, to realize that when he did this for no discernable reason, he was simply feeling overwhelmed, and wanted to be in a quiet place for a while, where he would calm down. He would scream when I vacuumed, or at other loud noises, for instance. But then, he would also begin to scream any time at all, and absolutely get hysterical. Nothing in the world could calm him. Therefore, since childhood, he has needed to take Desipramine every day, to help keep him from getting upset over nothing anyone can figure out. Now in adulthood, he does also occasionally need Lorazepam, and it is prescribed to be taken as needed, when the Desipramine doesn't work well enough. When nothing is wrong that anyone can see, and no cuddling, reassuring, distracting, or Tylenol, etc., will calm him, this tiny white pill makes him peaceful and cheerful again!
SICKNESS Sickness is a time-consuming thing. Time spent in careful watching, and sometimes in worrying. Time spent in helping the child. But except for the attentive guard, especially with respiratory diseases, since a child who cannot cough well, might not handle them well; their illnesses are not much different than those of typical children. My son Travis developed a respiratory disease from chronic aspirate pneumonia, requiring oxygen and suctioning as he grew past babyhood. That is another story. If you adopt a child who has gotten past babyhood, you probably have an accurate idea of what health problems, like seizures, or respiratory problems you and your child will have to face. I have known children with trachs as well, but that again, is another story.
SEIZURES Seizures are a very common thing that often go along with profound mental retardation. Out of my ten profoundly retarded children, nine of them had a seizure disorder. Seizures are no big thing for a child who cannot walk, unless they are very severe. In any case, every child with a seizure disorder needs to be followed at least yearly, all their lives by a neurologist, who will prescribe medicine. In only two children out of my nine with seizures, were neurologists unable to completely control them. Misty had uncontrollable infantile spasms, and Emily had uncontrollable grand mal seizures. Most seizures in a child who is on medication, are not worrisome. With a grand mal, the first thing to remember is to put the child on her side, so she doesn’t choke on her saliva or her tongue. Your child’s doctor will let you know the exact things you should do for your child, while you wait for the seizure to stop. It is very rare for a grand mal seizure to continue on, and not stop on its own. I only had one child who ever experienced this. A grand mal seizure can kill if it does not stop. But even an uncontrolled seizure of this severity can almost always be stopped in an emergency room, by special medications.
TRAINING I read an article written by a professional, that an adoptive parent of a child with profound mental retardation needs to be a specially trained medical person. Hogwash! Children who are born with a disability, are born to regular mothers, without specialized training. A parent learns as they go. There are all kinds of people to teach you what your child needs. Doctors, nurses, teachers and therapists. It won't be long before you will be well trained in the medical areas your child needs you to be. You will become the top expert on your own child's care. But it is not necessary at all to be trained, in the beginning. Those of us who adopt children like this, have a keen interest in medical issues, and learning what our children need is fascinating and rewarding.
REWARDS For a non-Christian, your rewards will be delightful. The smile on your child's face. The knowledge that your child is loved, and likely would never have known love without you.
For a Christian, your rewards will be enormously richer. The smile, yes. The love, yes. But much more. A profoundly retarded child cannot reach the age of understanding, as the Bible describes it. Therefore, your child will be going to Heaven, and will experience wholeness, perfection, and joy for all eternity. As a Christian, you will be there with your child, and with God, and this will be an indescribable thrill. You will see your child run, sing, talk, eat, laugh, and you will be able to know your child fully, at last!
SUMMARY So the care of a child with profound mental retardation is very much like that of a baby. Cuddling, feeding, changing, bathing, playing, and love. That's what it's all about. But there is one point I have left until last. Although your little one will continue needing these things, he or she WILL mature emotionally. Even though he may not be able to learn to roll over, talk, or play, his emotional development will mature. He may, or may not wake you up at night longer than a regular baby, but not forever. As he grows older, he will sleep better, and demand less of your time in the daytime too. He will grow more patient, waiting for his turn. He will amuse himself by absorbing the noises and laughter in his family. He will, in this way, NOT remain a baby. He will become easier to care for.
I know there are lots of us who enjoy nurturing! Why are there still all ages of babies and children waiting for adoption, who only need these things? Because so few people write about this, and it's not a common subject. There are books full of children who are waiting to be adopted, many of whom have profound disabilities. They can be found on the net too now. Just think about all the people out there, who would love a child like this! I am friends with many of them. Maybe you are one of them too. If so, just reach out!
