FamilyConnect

No two children are the same, and this becomes even clearer when children have multiple disabilities. Your child’s strengths and needs are uniquely hers. Children with visual and multiple disabilities vary greatly in their abilities, interests, capacity to use vision and other senses, family background, and personalities. Even children with similar visual and medical conditions may function very differently from each other. They may have a severe intellectual disability or be intellectually gifted; be physically constrained by certain neurological, motor, or other conditions; be very talkative or unable to speak; or enjoy being hugged or tend to avoid physical contact. Equipment, materials, and strategies that work well with one child may not be effective when used with another, even when they are similarly functioning. However, what children who are multiply disabled usually have in common with other children with multiple disabilities is that the combination of their conditions presents challenges when it comes to accessing, perceiving, and processing information and to acting to exert control over their environment.

Pressures on Your Family and on You

Because their children have more than one disabling condition, parents of multiply disabled children may find themselves caught up in all the labels that medical and educational professionals use to describe their children. They may also find themselves overwhelmed with the number of professionals they need to consult about their children’s conditions and by the sheer volume of appointments they need to keep. As more and more labels come at you, there may be times when you begin to feel as though you are losing focus and losing sight of your child—her personality, the things the two of you do together, and the important part of your family that she is. This reaction may be natural if it happens, but it’s important to try to refocus on your child. In today’s pressured world, it may be difficult to pause and do that but doing so can be an invaluable process that supports your family life.

Your feelings and expectations and those of the other members of your family about having a child with multiple disabilities may vary. The way in which your child with multiple disabilities participates in family life will vary too and will be influenced by her age and the severity of her disabilities. For many families, the basic requirements for their children with multiple disabilities are that they

• be safe and comfortable;
• learn to be as independent as possible;
• be able to communicate;
• be appreciated, respected, and loved; and
• have opportunities to be a full-fledged member of their community throughout their lives.

Families are the key ingredient in helping to make all these things happen.

Taking Part in the Family

Families can be the most important factor in a child’s success in reaching his or her full potential. The efforts of a child’s family to provide life experiences and obtain necessary services can make a tremendous difference. In addition to finding knowledgeable medical and educational professionals who can help meet the needs of their children, families can help a multiply disabled child grow and develop by having expectations that their child will, in fact, do exactly that! When children are a part of family life, they learn about the world around them, about the people in that world, and about themselves as a person as well.

For that reason, it is important for your child to be involved in mealtimes in your home, even if she may not eat solid food using a fork, knife, or spoon. Sitting at the table with the rest of the family gives her the chance to be social and to communicate. Perhaps you may need to feed her before everyone else because she’s on a particular schedule or is tube fed but finding ways to bring her to the table when the rest of the family eats can be important for her and for all of you as a family.

Throughout your day, whether you’re doing the laundry, getting the mail, or preparing a snack, it may often be quicker and easier to do these daily tasks while your child with multiple disabilities is listening to music or perhaps sitting on the couch with her grandmother. Although it’s not possible to involve her in every aspect of every task you do, if she doesn’t have some involvement, she won’t be doing what other family members do and won’t be learning new things. Pick one or two tasks a day where you can have your child participate with you. Perhaps she can help take the laundry out of the dryer and put it into a basket. As you fold the laundry, you can have her fold a few washcloths. Then give her the chance to put those away in the linen closet. It may take your child time to learn to do many things, but starting her at an early age in trying to do them will be very helpful.

You may also find it quicker and easier to go out to shop, see a movie, or visit with friends if you don’t have your child with multiple disabilities with you. All parents need some “adult time” to go out and do the things they want without their children along, so take some time for yourself. But, if you can, try to balance that time with opportunities for your child to go with you. If her attention span is short, her medical issues significant, or her behavior challenging, it can help to plan for success. Rather than taking her with you to the grocery store when you have 20 or more items to buy, bring her along when you need only one or two. This way, you can be in and out quickly yet still give her a chance to learn how to push the cart, put an item in the cart, and pay for her purchase.

If You Have Other Children

The brothers and sisters of children with multiple disabilities can sometimes be resentful of the amount of time their parents may need to spend with a multiply disabled child. They may also find it upsetting if they have to take care of their brother or sister when they would rather be with their friends, or they may be embarrassed about the way their brother or sister looks or acts. If this is the case in your family, it may be helpful to talk openly with your children about their feelings.

Also, giving your other children information about their brother’s or sister’s disabilities so that they can understand what is causing the differences they see may help them come to ways of coping with those differences. If you need their assistance, explain why, and make an effort to provide times when they can just relax and not have to act responsibly. Like all children, they need time for themselves and a feeling of normalcy in their lives. If you can provide opportunities for other family members to spend time with just you and just with each other, as well as with your child who has multiple disabilities, you may all benefit in many ways.

To help identify and understand the emotions of your sighted children, FamilyConnect recommends reading the book Beyond the Stares: A Personal Journal for Siblings of Children with Disabilities, which chronicles the feelings of children who have siblings who are visually impaired.

Tips for Being Social

Many families of children with multiple disabilities often find that it’s a challenge to involve their children socially with others their ages. As children get older, the gap between them and typically developing children can become greater and add to the social challenges involved. Therefore, plan for your child’s social success early.

• The more involved your child is in family life, the more social experiences she’ll have.
• Play games with her, such as tickling and throwing her in the air when she’s young.
• As she moves into preschool, show her how to play with toys that other preschoolers use.
• When you’re out together in public, help her say “hi” to people or ask them questions. She may not do this with her voice but might push a switch to play a message you’ve recorded or might use sign language. At times, you may need to help the person she’s communicating with understand her communication and show him or her how to respond and keep the conversation going.
• Try to dress your child similarly to others her age. Buy her toys that appeal to children of the same age, even if she doesn’t use them the way they do. They may focus on winning a hand-held game, but she may enjoy holding it because when she pushes the buttons, it makes sounds. Toys can offer great ways of bringing children together socially even if they are using them for different purposes.