So your friend or family member has a child who has been diagnosed with a disability. You want to help. What can you do?
It sounds so easy, but with a family member or close friend, it can be really difficult! Avoid giving unsolicited advice. Allow the caregiver time to just talk. It can be very helpful to get thoughts and feelings out in the open with a person that can be trusted to be nonjudgmental.
Dealing with a new diagnosis can be overwhelming. Even long after the diagnosis, coping with all of the issues that surround caregiving can be just so....daily. If a caregiver feels safe enough to talk, it may help her to organize her thoughts enough to see what the next step might be. A sounding board can be priceless.
You want to be supportive, of course; but please—only present information that’s within your area of expertise. If you lack expertise, you may consider volunteering to scour the internet for resources. A caregiver may not be able to get much computer time, especially at first. You might look for resources on the disability that are specific to your friend’s child, and gather information.
You might look for resources in your local community. What activities are out there that a disabled child might enjoy—from groups that would welcome them? Are there support groups that target caregivers of disabled children or adults? A support group can be a wellspring of resources, and networking with other parents who are facing similar issues can empower a caregiver and make them feel less alone in their world.
Do what comes naturally and ask the caregiver how you can assist. Everybody has different needs and priorities. However, your friend or family member may be too overwhelmed to pinpoint her needs. She may not want to impose. She may be so used to doing for others that she is uncomfortable accepting help for herself.
Be prepared to gently persist. Caregiver burnout can be a serious problem. So, focus on little things, especially at first. A couple of hours respite can be extremely helpful to a caregiver. Offer to sit with the child (or adult) who is disabled. If that’s not possible...well, everybody loves good food! Bring over a home-cooked meal, or simply send a take-out restaurant gift certificate.
Finally, remember the worth of your relationship to the caregiver in your life. Nobody’s care, understanding, and support mean more. Just being there can be the most important thing of all.
Joan is the mother of two sons with autism and is VP of Marketing at PMF.