As a parent, you are responsible to meet the needs of your child with disabilities: Food. Shelter. Clothing. A safe environment. Many people might consider that you are doing enough by providing this much. But you love your child and you know that there are other things your child needs in order to live a full life.
Communication: You know what your child wants: that gesture means food, that look means stop, that sound means “Mom.” Your child has also learned to understand what you want. That is a good beginning, and now it is important to make sure your child can communicate with others as well. This may be by learning to speak, but there are other ways to communicate. Sign language. Picture cards. Picture boards. Apps. Writing. Typing. You may need professional help to teach your child this skill. It may be costly in the short term. But prioritizing this need will open up your child’s world, allow them to connect with other people, and will help them take on new roles where they can contribute to the community.
Belonging: Being with people is not the same as belonging with people. Others will see how your child belongs with your family when your child participates in family life. This includes special occasions such as weddings and trips, but it also means participating in the responsibilities of the home. What are other children in the family expected to do? What are similar expectations you can have for your child with disabilities? He or she is not a guest for whom everything is done. Your child has a role to play as a member of the family. The same goes for school, for the neighbourhood, or any other group that your child is a part of. By participating your child will be seen as a full member of the group. Your child will belong.
Experiences: A full life includes a variety of experiences that we get because of the roles we have. Because we are a member of our family we eat out at a restaurant, we take a train trip to see relatives, we invite guests to our birthday party. Because we are students we dance in the school celebrations, go on the field trip to the museum, and compete in sports day. Because we are neighbours, we join others around the Lohri fire and play in the neighbourhood playground. These are everyday experiences that typical people have that enrich their lives, but often persons with disabilities don’t have the same experiences as others. They end up living an impoverished life as a result. You can give your child experiences, but even better—strengthen the roles that will open their world to a variety of enriching experiences.
Friendship: A full life includes friendships with people who want to be with us because they like us. Your child has the support of the family. There may be people who are paid to help your child (caregivers, teachers, therapists). What opportunities does your child have to be with people who simply choose to be with him? Usually, friends choose each other after becoming acquainted in another setting. They might both go to the same school, or work together, or walk around the park at the same time. What places does your child spend time with people who could become friends? Clubs, classes, work settings, faith communities—there are many settings where your child can get to know others. Friendships can grow from here, and those friendships will be mutually enriching.
Yes, some people may think you are doing enough by keeping your child safe, clothed and fed. They may not value the time and resources you are investing to give your child a full life. Communication, belonging, experiences and friendships. You know that these are not luxuries reserved for “typical people.” These are needs for all human beings. Including your child.
