To commemorate National Developmental Disabilities Awareness Month, we’re posting content that raises awareness and visibility. Today’s post comes from Lesley Cohen, MSMFT, a program fellow at The Family Institute’s Epstein Center for Psychotherapy Change.
The term “developmental disabilities” covers a variety of chronic conditions whose key features are impairments in mental and/or physical abilities. They may start to show up as delays in language, learning, behavior, or physical development. Development disabilities present themselves during childhood, adolescence, or even before birth. Even though they first appear before adulthood, they are present throughout a person’s life and require individuals and families to make modifications and adjustments for success. Some of the more common developmental disabilities are Down Syndrome, Fetal Alcohol Syndrome, an intellectual disability, Cerebral Palsy, and Autism.
It’s a matter of cultivating strengths, not focusing on deficits.
The most common myth I encounter, whether conscious or not, is that people with developmental disabilities will not be able to live successful, independent, productive lives in their community. In fact, most people with developmental disabilities still go to school and can receive vocational training that matches their level of functioning. It is a matter of cultivating strengths and unique skills instead of focusing on deficits and constraints. There are many misconceptions about the cause of developmental disabilities. For some diagnoses, such as Down Syndrome or Fragile X Syndrome, we can locate a chromosome abnormality that is to blame, or we can associate a disability with a head trauma or drug abuse during pregnancy. For most conditions though, the truth is that we do not completely understand the cause beyond some combination of genetics and environment. In some cases parents assume they did something wrong, and weigh themselves down with guilt and blame, which can get in the way of building a better future for the family.
Do not let the disability be the difference between your children.
Just like any children, your children with developmental disabilities can develop hobbies, interests, strengths, challenges, and goals. Keep realistic expectations of them; they will not hit developmental milestones the same way as their siblings, but they can still contribute to the family. Play to their strengths and modify the environment so they can participate in family activities – do not let a child “sit out” of anything just because they have a disability. This might mean delegating more manageable tasks when the family is getting ready for dinner or buying puzzles with bigger pieces for game time. Let your non-disabled children be helpers – but also let them be kids. Teach them to be advocates for their siblings, while making sure not to give them too much responsibility. These siblings tend to feel left out and are less likely to ask for help, but there are still ways to celebrate all the children’s accomplishments, big and small, in an honest way.
Families who are pro-active and get involved in treatment as early as possible tend to fare better than those who do not.
My first piece of advice is to get involved in some sort of community, whether it be an online forum, a support group, a local social services agency, or a meet-up. Learn how the same diagnosis can affect families differently, and find out how they cope with special challenges. Learning from research and doctors can go a long way, but nothing compares to the wisdom and comfort another parent might provide you. Ask for book recommendations, news articles, and blogs to follow.
Second, learn from your child. Notice the ways the diagnosis affects your child in particular, and do not assume that your child’s diagnosis makes them the same as every other child with that diagnosis. Always be curious, always ask questions, and understand that you could learn something new every day. For example, two children with Autism may present in very different ways. As a clinician, I have a knowledge of what Autism is, the relevant research and tools to help your family succeed, but you are the expert in your child’s day-to-day functioning. You might see something in your child that I do not – trust yourself.
Use this month as an opportunity to raise awareness.
My hope is that Developmental Disabilities Month can be a time of sharing and learning, as well as a celebration of everything that is still possible with a life-changing diagnosis. Raising awareness can be as simple as wearing an awareness button each day or keeping pamphlets at your desk at work to pass out to co-workers. You could organize or attend a fundraising event, or plan a special volunteering event with your family – teach your children the value of community service at the same time. Encourage teachers to create a special bulletin board with the class or participate in a class activity, and help your child be prepared to answer questions.
Lesley Cohen is the program fellow for the Epstein Center for Psychotherapy Change at The Family Institute, where she pursues advanced training in therapy. As part of the Epstein Center team, Lesley is involved in the implementation of empirical tools and feedback systems designed to improve the efficacy and efficiency of therapy. Lesley is interested in working with families and individuals around developmental disabilities, young adult transitioning, families with adolescents, family transitions (including divorce, remarriage, and co-parenting), trauma related stress and Post-Traumatic Stress Disorder, grief and loss, depression and mood disorders, and women’s issues. To read her full bio, visit our website.