By: Carole Norman Scott
1. Parents have experienced things that they have never shared with anyone—it hurts too badly (our two in-house clinic experiences when Ben was only four and six years old. He was “observed” in order to be diagnosed or taught). I’ll write about these later.
2. You’ve heard people say, “Having a baby sure changes your life-style”—an understatement when you are dealing with a handicapped child.
3. You never expect it to happen to you. There is unresolved guilt. You think back over your pregnancy and every move you have made since the birth to explain it. (Had flu while pregnant, took medicine, painted rooms, but did with Maureen too).—Doctors don’t tell you everything to do or not do unless you know to ask.
4. We all know we have made some mistakes and can think of things we wish we had done differently. It is such a responsibility to raise any child—you feel you must have done something wrong or left something undone to cause it.
5. Some have never had this type problem in their family, or have never even been around “handicapped” people (especially a baby) — I had a “normal” childhood. There was no one in my family like Ben. I only knew of one little girl who was deaf, but I had no actual dealings with her. She went to a “special” school.
6. The joy of “new life” is shattered when the child’s problem is diagnosed and labeled. Everyone has looked forward to the birth. There have been showers by friends in expectation of a great event. People don’t know what to say. No one knows how to react (even close family). They are overwhelmed too, and grandparents can hurt as badly in their own way as the parents because they hurt for their children too.
7. Parents feel a deep burden—a sadness—like a death, but there is no rite of passage for such an event.—They are so disappointed, yet expected to function—with no time out to even mourn.
8. The normal “pride” in an offspring is affected (especially in the father if the child is a boy). Parents may inadvertently place blame on each other or in the in-laws and their idiosyncrasies—they are desperate for a reason. That can cause friction in their marriage when they need to pull together the most.
9. Many times, the parents are in a state of depression, but don’t even know it. Having a handicapped child involves the same steps of grief as a death.
10. People don’t want to hear about it. It’s too depressing for them. They have their own troubles. The parents of the handicapped child feel shunned, in a way.
11. The parents hurt for the child. Both they and the child are so helpless, and the future so bleak. They feel that it isn’t fair. This is an innocent little child who doesn’t deserve such a fate. The parents worry for the child’s safety, and don’t know how they’ll ever be able to cope for a lifetime with this problem.
12. It is so hard to be around other people and their children who act and look normally, and to hear other mother’s trite complaints. The parents of the handicapped child look at other children developing normally and are happy for them, but sad inside for their child.
13. The parents really don’t understand all the feelings they are having themselves (I did not realize that I was depressed—I didn’t have time to dwell on it.)
14. It affects the whole family. Other people never seem to take into consideration that the siblings in a family with a handicapped brother or sister have a lot to deal with too. In turn, the parents sometimes have “double trouble” being concerned about how this will affect their other children. They don’t feel it’s fair to them either. (Excerpt from a letter I wrote my parents when Ben was little): “Mother, don’t get upset and think that you have done something wrong. You haven’t! It’s me that is rather muttled lately. There has just been too much happen too soon, and too much criticism from other people (doctors) that I suppose makes me sensitive to how my actions appear to others. I’ll get over it. I have before. It just has all been too recent. I told Jay that sometimes I get so tired of acting like everything’s fine. Ben’s problem is such an overwhelming one and it does affect every facet of our lives and of Maureen’s and John’s too. I just want to do things right by them so badly and I don’t always feel up to it. I guess all this will just take a steady effort on all our parts.”
15. It is much harder to find people to baby-sit with your handicapped child. They take so much more time and care. These children do not usually play appropriately and are harder to entertain. They do not relate normally.
16. It is harder to find time for your husband (or wife) and the other children. Sometimes you become obsessed that you are the “only one” that can care properly for the child.
17. It is hard to know how to go about disciplining these children. You don’t know how much they understand, and don’t know how much to expect or how much to carry through. You must try to treat them as normal as possible, but don’t know if you are being fair to them. That places more “guilt” on you.
18. Potty-training is so hard! You don’t know if they grasp the reasoning behind it or feel the same “urges” that other people do. (Ben does not feel pain or react to it as others do.) It took him several years to handle the “grunty” problem. He would go a whole week without going, and then “smudge” in his pants. It was a terribly “gross” ordeal (for him AND for us). I took him to the doctor and was assured there was nothing physically wrong…but found out later in his life that he had been impacted, and little bits were oozing out around the “clog!” Oh…poor Ben! If only we’d known!
19. Doctors sometimes make things harder, no matter what the diagnosis, by hinting that you are not handling things properly when you are doing well to survive. Parents could use so much more praise! You have done wonderfully! You are to be commended—I commend you—commend yourself! The doctors said that Ben was not as bad off as he could be—I finally decided that just maybe that was because he was in our family!
20. The waiting to find answers, and your hopes shattered time after time when no answers are found is so hard. Unless there is a death of the child, there is no end to it (and you feel guilty that such thoughts would even enter your head). You know that you cannot stand up under the strain of watching them suffer indefinitely. You have no formal training in how to take care of them other than “motherly instincts”, and that has often been questioned, so your confidence is shaky, at best.
21. It is hard when school starts and everyone else’s child goes about their business, and you are still trying to find a place where your child will “fit in”. It makes you feel sometimes like someone from “outer space” (or that your child is an alien of some kind).
22. People sometimes look at you strangely because of your child’s behavior or looks. That never gets any easier to deal with, no matter how old the child may become (In fact, it gets harder as they get older.)
23. Fear and dread of the future may plague you. You think “What will ever become of the child if he can’t fit into a school setting or into society”. You pondered over what will happen if you should become ill or incapacitated, or even worse, should die.
24. Watching them grow up and get older, each birthday becomes a little harder. You may find yourself dwelling on what “might have been.” Excerpt from another letter I wrote my parents when Ben was little: “Thanks for the compliment on the kids and how they behaved. You know, I think I need be to reassured that they do pretty well, as I know some of Ben’s rituals do get mighty annoying. I don’t think people realize how “old” they get when you deal with them day after day, week after week, and year after year. I’m sure thankful that you all accept him and love him for himself (the way he is)!”