FamilyConnect

No two children are the same. This becomes even clearer when children have multiple disabilities. Your child’s strengths and needs are uniquely theirs. Children who are blind or low vision and who have multiple disabilities vary greatly. They have different abilities, interests, capacity to use vision and other senses, family background, and personalities. Even children with similar eye and medical conditions may function very differently. They may have a severe intellectual disability or be intellectually gifted. There may be physical constraints due to certain neurological, motor, or other conditions. Children may be talkative or unable to communicate verbally. They may 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. This can be the case even when they are similarly functioning. However, children who have multiple disabilities usually have a common factor. 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

Parents of children with multiple disabilities 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. You can lose sight of their personality or the things the two of you do together. You can forget the important part of your family that your child is. This reaction may be natural, but it’s important to try to refocus on your child. In today’s pressured world, it may be difficult to pause and focus on who your child is, 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. It will be influenced by their age and the severity of 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.

Your family is the key ingredient in helping to make all these things happen.

Families Make a Difference

Families can be the most important factor in a child’s success in reaching their 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 education professionals who can help meet the needs of their children, families can help their 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.

Involving Your Child in Mealtimes

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

Involving Your Child in Daily Routines

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 their grandmother. Although it’s not possible to involve children in every aspect of every task you do, if your child doesn’t have some involvement, they 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 your child can help take the laundry out of the dryer and put it into a basket. As you fold the laundry, you can have them fold a few washcloths. Then give your child the chance to put those away in the linen closet.

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. Take some time for yourself. But, if you can, try to balance that time with opportunities for your child to go with you.

If their attention span is short, their medical issues significant, or their behavior challenging, it can help to plan for success. Rather than taking your child with you to the grocery store when you have 20 or more items to buy, bring them along when you need only one or two. This way, you can be in and out quickly yet still give your child a chance to learn how to push the cart, put an item in the cart, and pay for your purchase.

If You Have Other Children

Siblings can sometimes be resentful of the amount of time their parents may need to spend with a child with complex needs. 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. Additionally, 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, give your other children information about their brother’s or sister’s disabilities. They can begin to understand what is causing the differences they see. It 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, APH FamilyConnect recommends reading the book Beyond the Stares : A Personal Journal for Siblings of Children with Disabilities. It chronicles the feelings of children who have siblings who are blind or low vision.

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 they’ll have.
• Play games with your child. Tickle and throw them in the air when they’re young!
• As your child moves into preschool, show your child how to play with toys that other preschoolers use.
• When you’re out together in public, help your child say, “Hi” to people or ask them questions. Your child may not do this with their voice. That’s okay! Your child can push a switch to play a message you’ve recorded or use sign language. At times, you may need to help the person your child’s communicating with understand their communication.
• Try to dress your child similarly to others their age. Similarly, buy toys that appeal to children of the same age, even if your child doesn’t use them the way peers do. Peers may focus on winning a hand-held game. Your child may enjoy holding a hand-held game because the buttons make sounds. Toys can offer great ways of bringing children together socially even if they are using them for different purposes.