When I met my husband in 1984, he was the custodial parent of his identical twin sons. They were five years old. What the world saw was two beautiful, blue eyed, blonde, full of life little boys.
There was something though that was not visible. They were both profoundly deaf. During the first weeks of getting to know each other, I heard the story of what led up to his sons’ diagnosis. There was of course a series of tests that eventually led to the diagnosis of “profound, sensorineural, bilateral hearing loss”.
They were both profoundly deaf in both ears and it was permanent. My husband and his wife at the time, chose to enroll them in a school for the Deaf where they would communicate in American Sign Language. It meant for them to also learn the language, which they did. This of course was not the life they were expecting but they accepted it and moved forward.
Parenting a child with special needs requires more time, patience, understanding, tolerance and energy than parenting what we call a “typical” child. There are often special transportation requirements, sometimes ongoing medical appointments, mobility problems that require special wheel chairs or other mobile devices, medications that require daily monitoring or the hiring of special assistants. The list goes on.
With all the tasks in our daily lives, here are some Top Tips from Barbara Desmarais for parents on coping when raising a child with special needs :
1. As best you can focus on her abilities rather than her disability. It will help to build strengths in other areas. Write down her strengths and abilities. They will then become more visible to you.
2. Let go of any expectation that you are to do it alone. You do no one a favor by insisting that only you can care for your special needs child. You will have more to offer if you give yourself lots of breaks and make a conscious effort to care for your own needs. Caring for yourself will enable you to be more patient, resourceful and attentive.
3. Find a support group. If you can’t find a support group in your community, create one. We’re fortunate now that with the help of technology we can build a community of people who live all over the world. Ideally, it’s nice to have both a virtual community as well as an in person one. It’s wonderful to be able to socialize in real life with people who have many of the same challenges as you. We all want to know we’re not alone. Also, being part of a support group provides the opportunity to share resources.
4. As best you can, maintain your sense of humor. Seeing the funny side of something doesn’t mean you’re mocking it, it just means you’re lightening an otherwise intense situation. Laughter is therapeutic and releases a lot of tension.
5. Be team players if you’re a couple raising a special needs child together. Try not to get into the “my way is the right way” way of thinking. You’re a team and it will be best for your child if you work as a team. Be patient and tolerant with each other. Support each other’s efforts. Recognize you’re both doing the best you can and that can look quite different for each of you. This is not a time to judge or criticize.