Has your child recently been diagnosed with a disability and are you wondering how that label may impact your child’s life?
Or maybe you’ve asking how important is that label in understanding your child? Does a label really tell people very much about an individual person who happens to have a disability?
Rest assured; you do not have to allow disability diagnosis to define your child as a human being. Read on for tips to help you and your child conquer the fear of labels!
Today, we are so accustomed to using disability labels to describe people with disabilities that we seldom consider using any other words to describe them.
Unfortunately, the reality is that disability labels represent a passport to many services: no label, no services.
So, while many of us wish labels would dissolve altogether, they are a necessary evil within certain environments (e.g., medical services, therapy provisions).
Any disability diagnosis can be difficult to come to terms with as a parent or caregiver. You may be coping with a condition you know very little about and trying to find new ways for everyone to live together and feel supported.
Unfortunately, sometimes the medical or other professional who made the diagnosis doesn’t offer parents any guidance on what to do next.
You might be wondering at this point: so, should parents fear getting an official diagnosis aka label for our children?
Absolutely not! Here are some practical tips to get you beyond the fear of labels and equip you and your child to move forward:
1) Get Informed.
The first step in dealing with a new diagnosis is getting informed. You need to learn all you can about your child’s diagnosis and what it means, especially about how the brain works.
Much of the initial fear about disability labels stems from entering unknown territory. Give yourself grace and time to research and explore the unknown.
If your child’s doctor or therapist sent you home with information about your child’s diagnosis, you could start with reading that, and then dig a little deeper using resources available online and in other locations.
As a homeschooling parent, a great way to find practical information (and encouraging support) is to connect with a group of parents who are homeschooling children with a similar diagnosis to your child’s. For ideas on where to find different kinds of groups and advocacy organizations, click here.
Meanwhile, remember that this child newly diagnosed is the same child you have known all their life! You have simply been given one more piece of information that can help you understand them better and equip them to learn better.
2) Find professionals for support.
Take the time to learn about treatment and therapy options in your area. This may include support therapies for your child and support groups for yourself.
Make appointments with your child’s doctor to discuss your options and understand that not every service that is offered to you will necessarily be required for every child.
For example, if you have a very young, but social child who has been diagnosed with autism, he may be eligible for 40 hours of applied behavior analysis, but you may decide that that route of therapy is too intense him.
With young children, consider making appointments with your state’s early intervention department. This will arm you with a team of professionals who are ready and able to help you understand and embrace your child’s differences.
3) Limit the use of disability diagnosis labels.
Consider people who have medical conditions such as cancer or liver disease. They almost never identify themselves as their disability.
A person with cancer, for example, usually does not feel compelled to tell every person they meet about his or her condition! Their personal information is no one’s business. Often, this is done to avoid negative or pity reactions.
You have the same right with your child. Even if your child’s condition creates a difference in appearance or behavior that generates curiosity in others, understand that you are under no obligation to satisfy that curiosity. You may choose to educate inquisitive people, but you are also completely justified ignoring insensitive or rude comments and stares!
4) Focus on a person’s interests and needs instead of the label.
In any community, focusing on an individual’s interests and needs, instead of a disability label, can lead to inclusion into the community!
If, for example, people get past an autism label and recognize that your student is a great speller, they no longer assume he can’t participate in the regional spelling bee. Instead, they will figure out how your student can access the environment and the adults around will do whatever it takes to ensure that he is successful.
At that point, there is no need to announce that “My child has autism.” Instead, a parent then can feel comfortable sharing strengths and needs and not worry about their child being excluded solely based on a label.
It is impossible to predict all of the many wonderful changes that can occur when we move beyond the fear of disability labels.