Fathering Special Needs Children
"The most important...work you and I will ever do will be within the walls of our own homes."
-Harold B. Lee
OverviewWhen fathers learn that their child will have lifelong special needs or that they have a dangerous illness, their reactions can range from shock, to acceptance, to greater love. Fathers often try and meet these challenges with courage and ingenuity. Many fathers are highly commited to their special needs children and devote long hours to the physical and emotional care of their children (Brotherson & Dollahite, 1997).
While there is relatively little research on fathers with special needs children, in most cases, whatever the nature of the child's handicap, there is a much greater likelihood that the children with attentive, encouraging fathers will eventually make successful adjustments, cope constructively, and develop healthy self-esteem than children who suffer from lack of paternal support (Biller, 1993, p. 216). Brotherson and Dollahite (1997) also add that generative fathering has a profound impact on the development and happiness of the father, as well as the special needs child.
StoriesMany of the stories in this section illustrate Ethical work, as fathers appropriately choose to meet the needs of their children. Although describing his daughter's birth defect, this father expresses his joy at having the opportunity to adopt.
"Christina has a congenital defect, which is not really genetic, but it's something that happened in the womb. What happened is that somehow she got what's called an amniotic vant [?]. There are two causes for that. Either the leg, which is involved, was connected to the amniotic membrane, which is the inner lining of the sac, or they believe that the amnion sends out fibers to reabsorb some of the nutrients in the amniotic fluid and somehow they got wrapped around the upper portion of her lower leg.
"It acted somewhat like a constriction band. She's had two surgeries now and has to go on for a third. In the first surgery they did a Z-plasty [?] where they removed the constricting band. In the second surgery they operated on her foot to help release the Achilles tendon and the medial tendon on her foot, because it was pulling her foot in. When they did the Z-plasty they discovered that she has no lateral muscle to her foot, meaning no opposition to help pull her out, so she has this problem. She wears a brace.
"However, that doesn't slow her down. We knew about it from the day that they called us with the possible adoption. We had contacted this agency in Mississippi and they said that they don't adopt to families who are Caucasian--they mainly put these black children in black homes. But when they came up with this child, knowing they wouldn't have a place for it and we'd just talked to them, they called us back and said, "Are you still interested? We have this child and she has this special need." At first we didn't even know what it was because it's a very rare condition.
"So, we tried to find out some information. As far as attitude is concerned, I think that we were kind of excited about that here's another baby. You take the chance that any baby you adopt or have born might have problems, and that wasn't a factor. We were looking for a child with problems. It was more excitement than anything else. . . . She's walking, she's running! She falls down once in a while, but it doesn't slow her down. She's developing at a normal rate."
Brotherson & Dollahite(1997) found the father's attitude and commitment toward the special needs child to strongly affects the way the rest of the family, especially the mother, adjusts to the challenging situation. In an exellent example of Development work, Bill talks about the death of a child and how it has helped him and his wife, Marci, cope with the special needs of their newest child who has Down's Syndrome:
"[A]bout a year before Neal, we had another child that was born twelve weeks early that didn't survive and did die. I think that gave us strength. It was hard. It was hard to hold a little baby and have a doctor ask you, "Should we try and revive this child? If we do, this is the quality of life it will have." Then, to be forced to make that decision on the spot based on your feelings and advice from the experts, that maybe that isn't what we should do at the time--it was tough. It was real tough. That's probably the hardest decision I've had to make in my life. They never revived it.
"You could see its little heart beating a little bit, not really breathing, but just there while we held it for a few moments, another boy. Marci just went into the hospital for a checkup and never came back out, having the baby a few hours later. I got there in time after I was up in Layton doing some work. I got a call that said, "Your wife is having a baby," yet I knew that she was three months early....You can't describe feelings and you can't explain them, which is why a lot of this is just based upon your personal beliefs.
"A lot of times that's all that you've got. But the whole feeling between John, the one that passed away, and Neal, the one that lived, was totally different. I think that we had to experience the pain of John dying so that we could give the proper emotional support to Neal when he needed it."
Brotherson & Dollahite (1997) state that fathering special needs children requires "generative ingenuity" (p.104). This father tells how the simple joys of fathering brought him closer to his special needs child.
"Just seeing him progress a little bit we've had fun. He's very simple at this point, and so just playing with him on various occasions where he started to respond or come back with a new reaction has been fun. I've had a couple of good times changing his diaper, because you can get in his face and be fairly close to him, and he's actually started talking or babbling for me. On the changing table I can usually get him to start babbling right back at me. . . I've been working on this thing of him showing me his tongue.
"You have to get his attention first, but if I get him going then I might be able to get him to show me his tongue. That's the only thing we can get him to show us. You can't get him to touch his nose yet, or his ear. For a while there we were asking, "How big is Jeff?" and he'd actually raise his hands in the air. But, he's dropped that response entirely. So, the only thing I've gotten that's a definite response to a question or input is, "Show me your tongue." We'd sit there and stick our tongues out at each other."
Having a child who needs to have medical treatment can be difficult on parents. Snarey (1993, p. 94) found that as men became devoted to being a father in these difficult situations, they saw it as a choice and became deeply committed to it. This work then served as a continual growth promoting experience. The following story is an example of how a father found empathy and compassion in viewing his child's condition:
"She had a lot of spinal taps and a lot of bone marrow draws and a lot of shots, and we were there, at least one of us and usually both of us for every shot she ever got--for every X-ray treatment, every radiation treatment she got, we were there. And she really wanted us there....I was always there for her. I didn't get to be with her as much as her Mom, of course, because I wasn't home during the day. But Megan got my time....[S]he had leukemia and I was going to make sure that I spent time with her. I could be there for her. I think I was able to give her empathy.
"There were times in the midst of all the treatments that you just try to push it to the back of your mind and forget about it. As a matter of fact, we lived much of those 2-1/2 years without thinking of her as having leukemia. We did our best to forget it....It was a natural thing to try and repress it, to forget about it as much as possible, and I would at times feel that was unfair to her....But mentally we could do that. We could just choose not to think what that was to Megan, and what it was like to get those shots. I pressed that down....Then from time to time I would think how unfair that was. Megan can't do that. Megan can't dodge those needles.
"We make her hold still for those needles. So from time to time I just had a crying spell. I'd just sit down and have myself a "remember" of what she was going through. I tried, despite the pain to myself, to keep in touch with what she was going through, to be there and to empathize."
"Physically caring for a child's needs, however mundane, symbolizes the love a father can express through his fatherwork" (Brotherson & Dollahite, 1997, p. 101). This father talks about his love and commitment in caring for his daughter, Megan, when she was in pain.
"I've just about spent my life caring for and nurturing Megan, when I wasn't at work. Maybe the hospital is the part we like to forget but can't. When her pain got to the point that she couldn't go to the bathroom, I was the one that got to do her bedpans for her. She would only let me do it; I was the one that did that. It wasn't a thing for Mom, and she didn't want anybody else in the room.
"She kicked everybody out of the room--nurses, Mom--Mom had to be outside the door, and I would get the bedpan as best as I could under her bottom without hurting her. Moving the sheets hurt her. It was not a good thing. But she let me do that for her, and I was able to take care of her needs, and it helped me that I was the only one she'd let do it. That was kind of neat. You wouldn't expect bedpan shuffling to be a wonderful memory, but it was. She trusted me to do my best job to not hurt her, and that was special to me that she let me do that."
These last three stories describe the experiences of fathers who have learned about their child's special needs. Some of the fathers have never experienced an exact diagnosis for their child, and yet they know, because of experience with older children, that something is not quite right with this child.
"We've actually never found out. I was sitting on the couch when I first became aware. Because all of our kids were early readers and early speakers, such as our other boy was doing the sounds and begging for alphabet help at 2 years, we were sitting on the couch and I was doing the sounds with him. I was trying to teach him the sound of "b." He was just obstinate and said "No," in a cheerful way, but his body went stiff and he would turn his head and refuse to look at me.
"I don't know if that was the realization but I think that was the beginning of it. I realized that he was different than the others. Actually, if there was a moment it was when Miss Sharon at school said, "We think he has autistic tendencies. I'm fairly confident." But with that phrase she also said, "I'm very confident he can grow out of this and deal with it." Actually it was a reassuring thing and my body relaxed when somebody said to me that you could deal with those autistic tendencies. To me the second experience was a positive moment."
Fathers sometimes have healthy children who develop a problem that affects their capabilitites, and yet have hope that with help and work they may progress normally.
"When he was a year old he was talking like any normal kid. He was starting to say words and then all of a sudden there was nothing. We tried and tried to get his ears cleared up with antibiotics, etc. and it didn't work. It was really kind of hard when you see other kids his age talking and communicating, and Luke would just sit there and do nothing. Physically he was fine. He could run and jump and throw.
"Of course, he threw a lot of tantrums and stuff like that (he got a lot of exercise!), but it was hard. I guess I'm kind of proud but I always wanted to be the best at what I did, and I thought, "Poor kid, now he's got to go through school and he'll be behind." But then I decided he could catch up if we work with him, and so we've got to do it now and hold up our end of the deal. At first it was kind of hard, but it doesn't bother me now. . . probably because of what I've seen him do and how he can learn.
"He doesn't have a learning disability, he's just had a hard time hearing and now he's got to catch up. At least, I don't think he has a learning disability because he learns pretty quickly. Now I've seen that it will work out."
Some special needs children have suffered critical illness at the beginning of their lives and others will live with the results of these early illnesses the rest of their lives. In this example of Development work, a father adapts to varying and difficult situations:
"Jeremy was born ten weeks early and at the time he was born he had a lot of infection throughout his body, in his bloodstream and everywhere. My wife hadn't had trouble in her pregnancy, but she woke up at 3:00 one morning and had a temperature and she said, "Paul, I think my water broke." So, we went down to American Fork Hospital and they told us, "Well, just prepare to stay here. We're going to keep you here down in bed for four weeks, six weeks, or just as long as we can until that body grows as well as it can. We'll keep you monitored." That was at 3:00 in the morning and 12:00 the next night she started to develop a temperature.
"They said that they didn't know if the baby was causing the temperature or if she was infected, but that if she had a temperature and there was some infection the baby would be better off outside of the womb than inside. So, at that time they decided that they needed to get the baby and have her deliver it. They took her over to Utah Valley Hospital and three hours later she delivered Jeremy. They induced her and she was able to have him naturally. When he was first born all that we first knew was that he had a lot of infection. The doctors had a real hard time fighting the infection and they didn't know what caused it or where it was going.
"One of the weakest points of a premature child is the respiratory system and the lungs, and the doctors had to be so aggressive fighting the infection that he developed lung problems where his lungs actually collapsed on him. So, they actually paralyzed Jeremy for an off and on period of two weeks and machines were breathing for him. That was real hard because you look at this little, poor, innocent child and he is not even moving. You know that the only thing keeping him alive is the respirator, breathing in and out, and you are helpless. From there he developed hydrocephalus and it wasn't until we were ready to take him home that it suddenly came into effect. He had a "Number 4 brain bleed."
"Well, what does that mean? It meant that his head was going to swell and they had to relieve the pressure, so they put in a Myer reservoir which they tapped with a syringe a couple times a day to relieve the pressure in the brain. That didn't take care of itself so they had to put in the shunt to relieve the pressure. The hardest part about this whole thing was that it never seemed to end. Those three months before we brought him home were the longest three months of my life, because it was just one thing after another. We learned a valuable lesson and were very happy that we had the doctors that we did, but all they can give you is their best guess.
"It's not a science based on concrete facts and they don't always know. They're not always right. But, we still don't look at Jeremy as a disabled child. He has been diagnosed with having cerebral palsy, so we still have a few challenges ahead of him, but it is not apparent to me as a father yet. At least, I don't see those disabilities. He is slower and doesn't do the things that other children his same age do, but he is progressing and coming along."
ConclusionFatherWork with special-needs children should and can be as wonderful and varied as special-needs kids themselves are. Fathers of special-needs children are ordinary men doing both ordinary and extraordinary things since parents of special-needs kids do the same things other parents do but usually have added burdens (and, often, added joys). Fatherwork with special-needs kids can be like the Special Olympics. Fathers can coach children to develop skills and confidence, provide opportunities for accomplishment, give encouragement and supportive cheering along the way, and present them with rewards for effort and accomplishment.
Every special-needs child deserves a father that runs and jumps with her through the challenges of life, one that enthusiastically hugs him at the end of each little success, one that hangs medals on his neck with pride and love in his eyes, and one that, through his constant encouragement and love, places a continual stream of flowers in her hands. Your child (and all special-needs children) needs the coaching, cheering, encouraging, and assisting that you uniquely can give.More metaphors about fathering
Learning and Application ActivitiesPlease complete one of the follwoing: