Disciplining a child who is “differently-abled” is likely to bring out the best and the worst in a parent. Parents try to help a child make up for what’s missing by increasing their love and attention, yet children with special needs trigger special frustrations in parents. Be prepared to run out of patience. We focus on Down Syndrome in this section, but what we say applies equally to any cause of developmental delay. Our son, Stephen, has Down Syndrome. Our most difficult adjustment in discipline was learning to cope with development in slow motion. Most children go through predictable stages of development. You know about when to expect what behavior and how long it will last. You know that two-year-old temper tantrums will diminish once the child learns to speak. Knowing you don’t have to weather this undesirable behavior indefinitely helps you cope. With the developmentally-disabled child, stages seem to go on forever, as do the frustrations in child and parents. For example, it may take this child a year to accomplish three month’s worth of “normal” speech development. Parenting a special needs child is a tough job. The ups and downs and joys and sorrows are magnified: You rejoice at each accomplishment, you worry about each new challenge.
Your child is special. Comparing your child to others of the same age is not fair. The real breakthrough that helped us come to terms with Stephen’s “disability” was when we quit focusing on what he was missing and instead started enjoying him for himself. We had to overcome our tendency to focus on his “problem” to the extent that he became a project instead of a person. “I’ll become an expert on Down Syndrome,” I thought; “Read everything, go to all the conferences, join all the support groups. We’ll even write the definitive book on children with Down Syndrome.” This didn’t work. It took me two years to strike a balance. Martha’s maternal drive helped her focus more on Stephen the baby rather than his condition. She determined that what he needed most from us was a full dose of attachment parenting, while not denying that he had special needs that required a special kind of parenting. We also realized that we could not let Stephen’s “condition” distract all of our energy away from the needs of the whole family.
Before a baby is even born, parents imagine what the child’s life will be like: piano lessons, baseball stardom, graduating from college, etc. Even with a normal child, you have to reconcile these dreams with reality as your child grows up. With a special needs child, this is a bigger task. You learn to live in the present. The milestones of the child’s life are less defined and the future less predictable—though your child may surprise you! In the meantime, set your standards for your child at an appropriate level. For example, reset your anger buttons. Your child will do some things that exasperate you. Our then four-year-old, Stephen, after watching his siblings throw floating toys into the pool, threw my pocket recorder into the pool. In his mind, this was daddy’s toy, and it was okay to throw toys into the swimming pool. Naturally, I was angry at losing not only a $300.00 recorder, but all the time it had taken to get those notes on tape. Martha reminded me that Stephen was just doing what was developmentally appropriate for him. I was the one who had behaved developmentally inappropriately. I was old enough to know not to leave the “toy” within Stephen’s reach.
In children’s logic, being different equates with being inferior. This feeling may be more of a problem for siblings and other kids than for the developmentally-delayed child, at least in the early years. Most children measure their self-worth by how they believe others perceive them. Be sure the child’s siblings don’t fall into this “different equals less” trap. This is why the term “special needs” is not only socially correct, but it’s a positive term, not a value judgment. In reality, all children could wear this label.
While it is true you have to change your expectations of a special needs child, you don’t have to lower your standards of discipline! It’s tempting to get lax and let special needs children get by with behaviors you wouldn’t tolerate in other children. He needs to know, early on, what behavior you expect. Many parents wait too long to start behavior training. It’s much harder to redirect an eighty pound child than a thirty pounder. Like all children, this child must be taught to adjust to family routines, to obey, and to manage himself.
A special needs child can bring out the best and the worst in a family. David, a baby with Down Syndrome, was born into a sensitive and close-communicating family. Immediately after David’s birth, I had a long discussion with the parents and their six-year-old daughter Aimee about surviving and thriving with a special needs child. The family first had to come to terms with the normal “why us” feelings and get to the “where do we go now” level. But then I explained to these parents the need level concept: every baby comes with a level of need, and every family has a level of giving. By practicing attachment parenting and getting connected, the whole family will develop a sixth sense about David, a quality of caring that no book or counselor will be able to give them. With all babies, attachment parenting is highly desirable; with a special needs child it’s necessary and a matter of survival.
I pointed out to them the probable pitfalls. Avoid treating David like a project. Join support groups, learn from the real experts: parents who have thrived with their Down Syndrome children. Above all, remember your vulnerability: Love for your child brings out the overwhelming desire to devote 100 percent of family energy to helping David be all he can be. That leaves nothing for the needs of the rest of the family. What David needs most is support from a stable and harmonious family.
It was also necessary to involve the older sibling in these early discussions. I pointed out to Aimee that she may feel a bit left out as her parents appear to give David a lot of the energy that previously went into her, especially since she had been an only child. That didn’t mean they loved her less. And the parents needed to guard against Aimee feeling deprived. They involved Aimee in David’s care, plus made sure that she got special attention unrelated to David. The end result was not only that David thrived, but the whole family’s sensitivity level went up a notch. Their marriage improved; and Aimee became a deeply-sensitive child, a quality which carried over into her social life outside the home.
Special needs children need developmentally- appropriate structure, but it requires sensitivity on your part to figure out what is needed when. Watch the child, not the calendar. Try to get inside his head.
It is very easy for your whole life to revolve around your special style of parenting, to the extent that it becomes an end in itself. This is a lose-lose situation. You lose the joy of parenting, and you lose your ability to be flexible. Eventually, you will either burn out or you will break.
Everything children do tells you something about what they need. This principle is particularly true with special needs children. Sharon, a ten-year-old with Down Syndrome, would go from child to child, pinching each of her peers in her mainstream class. Rather than extinguish this behavior by slapping her hands, the wise teacher perceived this conduct as Sharon’s way of communicating, and it gave Sharon distinction: “Sharon’s pinch.” The teacher used the principle of replacement behavior to channel Sharon’s pinching into worthwhile activity, while preserving the child’s need to communicate. She gave Sharon the job of passing out papers to each child in the class. Now instead of pinching them she could hand them a paper, and each one (with prompting from the teacher) acknowledged Sharon.
Don’t focus on the disability. Practice attachment parenting to the highest degree that you can without shortchanging other members of the family. Feeling loved and valued from attachment parenting helps a child cope with the lack of a particular ability.
There is a natural tendency to want to rush in and do things for a developmentally-delayed child. For these children, the principle of “teach them how to fish rather than give them a fish” applies doubly. The sense of accomplishment that accompanies being given responsibility gives the child a sense of value and raises her self-worth.
(Be sure you like all the alternatives.) Initially, you may have to guide your child into making a choice, but just the ability to make a choice helps the child feel important. Present the choices in the child’s language, which may mean using pictures, pointing, and reinforcing your verbal instructions (which may not be fully understood) with visual ones. The more you use this exercise, the more you will learn about your child’s abilities, preferences, and receptive language skills at each stage of development.
As with all children, your job as parents is to arm the child with self- control tools so that eventually he can discipline himself. Instead of saying to Stephen, “Stop kicking your sister,” we’d say “Stephen, control your feet.”