Some children are diagnosed with a specific disability such as Down syndrome or cerebral palsy at birth, while other children might not manifest a disability for many months. In either case, it's important not to make assumptions about the quality of your child's life based solely on a diagnosis. People with developmental disabilities often exceed the expectations of medical professionals and sometimes parents themselves. Here are some things to consider during these critical early years:
Be an optomist.
When parents receive the news that their child has a developmental disability, it's all too easy to think only about what he or she won't be able to do. But parents are continually astonished at what their children can accomplish, if given the appropriate encouragement and support. Delete "can't" from your vocabulary, and never assume your child won't be able to learn a task. Start with something small like learning to communicate yes or no, be patient, and as they progress move on to greater challenges. They'll surprise you more often than not. And when they do, celebrate it! No accomplishment is too small for a hug and an enthusiastic "hurray!"
Learn about your child's diagnosis.
It's often helpful to understand some of the characteristics common to children with specific diagnoses. While a child should never be defined by a diagnosis, knowing some of the challenges that come with autism or cerebral palsy, for example, can help parents identify strengths and weaknesses and develop coping strategies. Visit The Arc of Spokane's Family Resource Library for books about specific diagnoses and other topics that might be of help.
Pursue early intervention therapy.
While a developmental disability cannot be "cured," many children make huge advances in their development through intensive therapy before age three. If your healthcare plan doesn't cover early intervention therapy, contact the Spokane Guilds' School and Neuromuscular Center, a nonprofit agency providing therapy for children age three and under regardless of a family's ability to pay. Go to www.guildschool.org for more information.
Register for support from Washington's Department of Social and Health Services.
Children diagnosed with a developmental disability may qualify for support services from the State of Washington or Social Security. These services may help pay for diapers, special medical equipment, or respite care (having someone care for your child while you rest, work or spend time with your other children). Later in life, these services may help your child find employment or live away from home when you are no longer able to provide care. The Arc was a leader in the effort to establish these programs, which help families cope with their unique circumstances. Services are available on a first-come, first-serve basis, and the waiting list is long, so register as soon as possible.
Become an advocate for your child.
An advocate is someone who speaks on behalf of another. Our society is poorly equipped to accommodate people with developmental disabilities, so be ready to speak out to make sure your child's needs are adequately met. When a doctor orders tests, for example, ask about the procedure, inform those involved that your child may not understand directions, and request that appropriate accommodations be made for him or her. There's usually no need to be confrontational. Look at these moments as opportunities to educate others about your child and all people with special needs.
Join a support group.
You, your spouse and your children may experience some difficult feelings as you cope with the challenges of raising a child with a disability, and it helps to be able to talk about them freely with people who have been there and who understand. The Arc of Spokane offers mental and emotional support for parents and family members supporting a child with a developmental disability. We offer mentoring parents, a support group for parents or guardians, sibling workshops, and a support group for parents whose children are age 20 or older. To learn more, contact Helen Black at (509) 328-6342 or hblack@arc-spokane.or.
(continue to Childhood to Adolescence)
