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When the youngest becomes the oldest.

"Uh oh, uh oh, Thomas is crying," Erika says urgently. She goes to him and tries to find some way to comfort him, but Thomas pushes her away She looks at me in a curious, somewhat rejected manner. Erika is two and a half years old, and Thomas is four.

Having a child with a disability presents its own difficulties for parents. Add to that the special stresses that siblings of children with special needs go through, and the entire family structure is open to a complex arena of grief, competition, fairness and survival.


Thomas is our four-year-old who has autism and is mentally retarded. He functions at about a 14-18 month level, uses sign language, and can be very enjoyable, as well as very stressful, to be around. Erika is not quite three and is definitely the "older" sibling in our family She has gone through a unique process in order to deal with Thomas in her own very special way.

Erika's process of dealing with Thomas will continue to grow and develop as the years pass by. For now, as the months pass by, she becomes more of a helper, and she must keep asking me, "Why is Thomas crying?" and I keep saying, "I don't know." Together, we continue to come up with ways to help Erika deal with her special brother.


Unique problems arise when there is a child with a disability in the family. Even the normal sibling issues become exaggerated in our family. For example, the issue of fairness is more difficult. It is hard to make it "fair" when one child demands so much more attention, time and patience.

Sometimes, the normal one gets disciplined for things the child with special needs does not. If Erika yells in the store, she must be told to quiet down. Thomas has no verbal language, but uses lots of noises. If he decides to "get loud" in the store or restaurant, there is really nothing we can do to help him quiet down. His receptive language is so limited, and any verbal explanation does not help. It seems the only thing we can do is leave the area, which we usually are not willing to do. We try to discipline in relation to the needs of each child versus applying the same discipline in all situations.


Our language expectations are so different for each child. It is hard for Erika to understand why I tell her to "use words" when she is whining, but I will work with Thomas for 20 minutes when he is whining, trying to figure out what is wrong with him.

It is also difficult for Erika to understand that we have different expectations for neatness concerning food and eating' Thomas' motor problems have forced us to lower our expectations of him to eat neatly. We are coping the best we can, and he is slowly getting there. Erika is much neater except when she is imitating Thomas during mealtime. When she is messy," it surprises us. She wonders why I put bibs and dishtowels on Thomas during spaghetti-time and do not do the same for her. (Sometimes I just do the same for Erika so she feels as important).


The first time Erika started spinning around and rolling her eyes back into her head, I almost went nuts. I heard myself starting to tell her not to do that. I thought, "You're not autistic. You don't need to do that." But then I realized that she was merely doing a healthy imitation of her older sibling. It was all she knew.

When she was about two, she started to pull on me (just as Thomas does to communicate with us). At first, I resisted going with her. She is normal. She does not have to communicate this way. It represented too many issues for me. But then I realized that this was her normal. Our family may not be anyone else's normal, but it is our normal. I decided to let her take my hand, and I followed her around for about two weeks. Then slowly, she realized she did not have to communicate that way. But she needed to know I would respond to her in the same way as I did to Thomas, that she was just as important.


It is easy to slip into overzealous rewarding - jumping up and down, doing cartwheels - when the child with a disability does the littlest (biggest) thing. For instance, when Thomas says a word or plays with a toy, we go crazy. We try to always remember that Erika's uniqueness is just as important as Thomas'. We try to acknowledge her accomplishments, no matter how small, as much as we can. It may not always be even, but each one needs to be encouraged and praised. The mere connotation of the phrase "special needs child" implies the opposite of what the normal child needs.

The element of unpredictability sometimes pervades our household. Thomas' skills are so sporadic that it is hard to create some sort of certainty for Erika. Some days he will look at her or accept a toy from her, but it may not happen again for weeks. If Thomas plays with the wagon one day, and Erika says, "He did it, Mommy," it does not mean he will do it again, or that he will build on that skill. It means that Erika must adjust to a lot of ups and downs. As parents, at least we have some adult explanation for this. Erika must punt," and adjust constantly to things she cannot even comprehend.


Social situations present their own problems for our family. We imagine that in later years, the embarrassment that siblings often feel is going to be addressed. But for now, we must deal with the longing to be a "regular" family at picnics and potlucks.

Thomas looks so normal and is actually very attractive. This may seem like a benefit, but in some ways it is a problem. If a child already "looks" like he has a disability, people lower their expectations for the child's behavior. Having a perfectly normal-looking four-year-old child with very abnormal behavior creates a strange environment of unrealistic expectations and feelings of uncertainty and isolation.

When we go to social gatherings, one parent puts all of his/her energy into watching Thomas. As Thomas gets older and his disability becomes more obvious, social situations may become even more complex. We will always try not to squelch any of Erika's feelings about it. Also, we will try to help her deal with public comments and help her understand that other people's generalizations do not fit our family.

Often, one parent must become Erika's playmate. We play the games with her that Thomas cannot play, and talk about things they cannot discuss together. When we see Erika play so joyfully with her peers without disabilities, we realize how much of a relationship she has lost with Thomas. We try to give her lots of opportunities to play with normal children.

We see Erika feel sad and rejected when Thomas pushes her away. We see her try to make sense of it all when she looks at us and says, "Thomas no talk, Mommy." We see her rejoice in the small interactions Thomas sometimes attempts. Since she is so young, it is difficult to talk extensively about her feelings. We ask her if she feels sad or mad, and sometimes she nods or admits, "I'm mad at Thomas." I think in some way she understands that Thomas just can't do some things. Sometimes I'll say, "Thomas can't use words to tell me he wants juice, so he does sign." Erika has learned a lot of sign language. She has become a part of his learning experience.


The most important thing we have done and hope to continue doing in our family is to let Erika have her feelings about Thomas. It is the repression of those feelings that will do the harm.

In that same light, we try to help her feel just as important. That may involve doing special things with her. For example, going to the hardware store with Daddy is fun for her. Helping me make brownies or having a friend come over may not be the same as Thomas' attention, but it is special for Erika. We talk about "Thomas' time" when the therapist comes over and "Erika's time" when she gardens with Daddy.

Whenever Thomas starts crying or needs something, Erika is always right there, trying to hug him or figure out what is wrong. When I think it's necessary to let him work it out on his own, I will explain to her that Thomas needs to be alone for awhile. She doesn't like that. She doesn't want to let him cry.

Erika takes on a lot of responsibility for Thomas. To some degree, I think that is necessary. But we try not to force her into the "caretaker" role. Just by her childhood circumstances, Erika may grow up to be a more nurturing person, but I want her to be a child too and not have to always be the caretaker. She is naturally going to take the latter on more readily. In the nursery at my exercise class, she is the one who gets the babies their bottles when they cry and looks for their pacifiers and says, "Oh, what's the matter, baby?" We want to let her be a two-year-old too. We try to help her find a balance.

When Thomas gets into his cycles of hitting, it is very difficult for all of us. When Erika gets hit or pinched, we try to comfort her, instead of giving all the attention to her brother. Sometimes Erika is the one who has done the hitting. Giving the attention to the one who gets hurt seems to have worked. The aggressor does not get a big reaction out of his/her behavior. Sometimes, I will resort to giving Thomas "time out" in his room, since he has a hard time stopping the hitting once it starts.

As time goes on, we will have to advance the complexity of our explanations for Erika about Thomas and why he can't do certain things. In our family, we are trying to foster the idea that everything isn't always fair. We treat our children uniquely, not the same, because they are very different people. They have different needs and we try to meet those, while helping each one to feel important and needed. We allow our family to be different, and to allow what works to work.

Today, Erika runs to me after giving Thomas an animal cracker. "He likes it, Mommy He likes it!" "That's good, Erika. Does that make you happy?" She nods, yes' and runs away. Later, Thomas is banging on the window, and she says, "Mommy, Thomas banging." I say, "I know, Erika, I know." We go to get him and then she runs off to watch the rest of "Sesame Street."
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Title Annotation:handicapped child's siblings
Author:Post, Connie E.
Publication:The Exceptional Parent
Date:Mar 1, 1991
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