Kids with disabilities have the same ordinary needs as everyone else. They have the need to live at home with their family, as well as the need for a good education, friends, family, safety, security, fun, a supportive environment and the need to belong.
Because a child with disabilities tends to exhibit difficult behaviors, he or she is at risk of not belonging. This makes it even more important for parents, caregivers, teachers and providers to never lose sight of a child’s basic human needs.
- be mom and dad first
- think of challenging behaviors as “messages”
- learn about person-centered planning
- remember that relationships can make all the difference in the world
- help your child make a contribution to others
- live a life void of fun
- give ultimatums, give choices
- forget to take care of yourself, your partner and other parents
- overlook the importance of a good doctor
- assume anything
Of all the hats you must wear—advocate, care provider, therapist, teacher—the most important is mom and dad. Your love is the most powerful treatment and therapy imaginable. If all of the other stuff you do interferes with being a parent, then stop. Someone else can help with the other things, but no one else can be mom and dad.
Difficult behaviors result from unmet needs. In a sense, difficult behaviors are “messages,” which can tell us important things about your child and the quality of his or her life. For example, some of the messages your child may be conveying with his/her behavior include: “I'm lonely, I'm bored, I have no power, I don't feel safe, You don't value me, I don't know how to tell you what I need, My ears hurt, or My body does not move like I want it to.”
Obviously, there are many needs your child might be expressing through his or her behavior. A single behavior can mean many things. The important point is that difficult behaviors do not occur by accident, or because someone has a disability. Difficult behaviors are expressions of real and legitimate needs. All behavior, even if it is self-destructive, is “meaning-full.”
Ask yourself, “Is my vision for my child similar to the vision I have for my other children? When I think about what my child needs, do I focus on disability-related needs, or do I think about things like friendships, fun, a sense of belonging?”
Unlike traditional approaches to planning, which ask questions such as, “What’s wrong with you?“ and “How can we fix you?” person-centered planning focuses on questions such as, “What are your capacities and gifts?” “What supports do you need in order to express them?” “What works well for you and what doesn’t?” and “What are your visions and dreams of a brighter future, and who will help you move toward that future?”
Person-centered planning shifts the emphasis to a search for capacity in the person, among the person’s friends and family, in the community and among service workers. Steps are then taken to implement creative answers to the key question: “What particular assistance do you need because of your specific limitations in order to pursue the life that we have envisioned together?”
Loneliness may be the most significant disability your child will ever face. Many people with disabilities, young and old, live lives of extraordinary isolation. Some depend entirely upon their families for support. A brother, sister, mom or dad may be the only source of company, and friends are often absent altogether.
All too often, the only relationships people have are through paid staff. Although staff can offer a great deal, they change jobs frequently or take on new responsibilities. The resulting instability can be devastating to someone who is fundamentally alone.
Involve your child with other children at a young age (children with and without disabilities). It is easier to learn about the importance of relationships when their importance has been clear over a lifetime. It's easier to be a friend when you have friends who know something about friendship. Insist that your child be included in regular classrooms. Inclusion is a powerful way of building relationships.
Perhaps the most devastating effect of the separation between disabled and abled is that the child with a disability does not learn what he or she can contribute to others. In a sad way, the child becomes the “needy one.“ Being needy all of the time is dispiriting. Making a contribution to others—to your family, friends and the larger community—is good for you. It’s good for the soul. It’s good for the heart and the brain.
Help your child find a way to contribute to others. Start young because learning to give is a lifelong endeavor. Help your child learn how to support friends (e.g., an invitation to a sleepover, birthday cards, learning to ask, “How are you doing?” or “What's new?”). Things as simple as helping with household chores or helping out at church can teach your children that they can make a contribution.
Fun is a powerful antidote to problem behaviors. Count the number of things your child enjoys and the number of places she likes to go. Compare this to the number of things other children enjoy and the number of places other children go. Ask yourself, “Is my child having fun? Is she experiencing enough joy? Is this an interesting life?” Help your child to add to her list of interesting and really fun things to do. Spend time in regular community places where people hang out. Make fun a goal.
Many people with disabilities have little or no control over their own lives. Many of the decisions that we take for granted — such as what to wear and whether or not to have a cup of coffee — are made by other people. How would you feel if you lived such a life? The mistake we make with children and adults who have disabilities is that we assume that because they don't always make good decisions about some things, they ought not to make decisions about anything.
Always remember that our tendency is to become directive and negative when our children are engaging in problem behaviors. We tend to take control when our children are out of control. Ironically, our children may need more control, not less, when their behavior is disturbing. Choice is a powerful alternative to punishment. If your child's behavior challenges you, help him or her to find more desirable ways to express the needs underlying his or her behaviors. Instead of ultimatums, give choices. For example, “Bill, I know you're upset. What would help? Would you like to go for a walk? Or take a ride? That will give you a chance to calm down and then we can talk about what you need.”
Allow your child to make decisions throughout the day and make sure there are at least three desirable outcomes to choose from. It is also important that your child be able to say “no.”
Many parents suspend their own dreams and aspirations the day their child is born. They adopt an identity of “parent of a child with a disability,” putting their own needs on hold like a videotape that can resume at the touch of a button.
Many parents feel isolated because their child has a disability. They feel obligated to suspend their relationships with other people because the work of parenting their child seems all-consuming. Or they feel that other people will have difficulty understanding their child's disability. This creates a deep fear of rejection. Get connected and stay connected with parents of children with and without disabilities. Join organizations made up of parents who fight for the inclusion of their children in every aspect of community life.
Many people who exhibit difficult behaviors do so because they don't feel well. The sudden appearance of behavior problems may be a signal that your child does not feel well. Illnesses as common as a cold or earache can result in behaviors as inconsequential as grumpiness or as serious as head banging. It is important to establish a working relationship with a good primary health care physician. Although this is easier said than done, your child, especially if he has difficulty communicating, will need a doctor who can help him to stay healthy.
Don't be afraid to tell your child's doctor that you don't understand a recommendation or finding. It is important to get a clear and straightforward answer to all of your questions.
Remember, too, that it is important to go beyond a concept of health as the absence of a disease or illness. “Feeling well” and “being healthy” involves everything from a balanced diet to a good night's sleep. Help your child to learn about wellness.
It is easy to make the mistake of underestimating your child's potential because of his or her labels–or because he has failed to acquire certain skills. This is a tragic mistake. Nothing dooms people more than a lack of support.
You can speak volumes to your child about his self-worth by always including your child in conversations and explaining things as clearly as you can. Even if you doubt your child's ability to understand your words, know that at the very least your child will understand the tone of your voice. Make sure it reflects dignity and respect as often as you can. Never speak about your child as if he were not in the room.
Children with disabilities have basic needs just like everyone else. If you don't have the time or energy to follow all of these do’s and don’ts, be sure to remember these two critical ideas: Taking care of yourself is one of the most important things you can do. If you don't, it will be very difficult to take care of anyone else. And remember that your child's problem behaviors have meaning. Finding out what your child needs is the first step in supporting and loving your child.