Six Ways You can become a “Super Hero” to
Families of People with Disabilities
By Brenda J. Sullivan

1) Baby-sitting –Because a family often becomes isolated due to the 24/7 demands of caring for their loved one, this can be one of the greatest gifts. Offering to baby-sit for a few hours several times a month can breathe new life into an exhausted couple’s marriage or provide a single parent a much-needed break. Baby-sitting can also be a literal lifesaver for the primary caregiver! There is research stating that a caregiver’s life expectancy shortens by 10 years because of chronic exhaustion.

2) Become a playmate and friend to a child or adult with a disability – Children
and adults with disabilities often don’t have friends. Some are so physically and mentally challenged that the only contact they have with people their own age is passing them in a hallway at school or at the hospital on their way to a therapy or doctor appointment. Can you imagine if the only people in your life were your parent(s), nurses, therapists, doctors and teachers? No friends to play cards with, read a book to you, take you for a walk or send you a note in the mail saying “Hi, I’m thinking of you”? My friend’s son, 45 years old with developmental disabilities, is so lonely that he prays to God every day asking for a playmate. He’s been praying this prayer since his father passed away 15 years ago!

3) Overnight Respite Volunteer –This is another big one! Parents (including myself on occasion) have broken down crying begging for relief from their situations. I can honestly say that I haven’t had a full night of restful sleep in 11 years. For the last 5 years, we’ve been lucky to have a homecare nurse that takes over in the morning allowing me to sleep in. However, some families are not as fortunate.

We know of a family with two sons, both with severe disabilities. Several of their friends decided they would create a “dream team” of volunteers. Each person on the team signs up for one night during the week. They sleep on a cot outside the boys’ rooms and  get up to reposition them every two hours. These volunteers had no background with disabilities or any medical training. The parents provided enough training to get them through the night. If any major problems arose, they would simply wake the parents. If this is something you think you can do, don’t wait any longer. Approach the parents and volunteer your help.  

4) Organize and/or clean a room/house/yard –Cleaning my house is  last on the “To Do List”. With all that is going on with Katie, we just couldn’t keep up. My husband and I finally said “enough is enough” and hired a cleaning service to come in once a month. If a person doesn’t want to or can’t do the cleaning, another solution is to pool some money among several friends and family and hire a service. This is a great gift idea for those loved ones that don’t live in the area but want to do something special. Cleaning services are flexible and can offer several choices depending on how much you want to spend. For example: once a year “spring” cleaning, once a quarter, once a month, or, if you’re really generous, every two weeks.

5) Laundry Service – Send in the laundry brigade instead of the casserole brigade! This was something that I needed when Katie was a baby and in the hospital every other week. Many people overlook this old fashioned idea of “taking in laundry” for others. Parents of loved ones that are hospitalized for weeks come home overwhelmed  – you look around the house and ask “where do I start?” Remember, just because they’re home doesn’t mean the crisis is over as the caregiving continues long after the hospital stay. So instead of dropping off Aunt Hilda’s favorite casserole, surprise them and ask if you can pick up a basket of their dirty laundry. Promise them you will have it back washed and folded in 24 hours. They will love you for it! I know I would…if asked.

6)  Mother’s or Dad’s Helper –Offer to run errands such as grocery shopping, picking up prescriptions, etc. Offer to clean medical equipment, organize and inventory medical supplies. Offer to help with the kids’ homework, both for siblings and for the child with the disability. Offer to do anything that Mom or Dad needs done at that moment. But please be aware you are there to HELP them and not be entertained.

I see this a lot when I have “respite” workers in my home. Katie is on the couch watching cartoons and I am “entertaining” the worker. No matter how hard I try to redirect them, they always seek me out for another chat. It’s frustrating when I’m trying to get dinner ready or finish a project. So please be mindful of why you are there.    

These are just a few requests I’ve heard from parents and have wished for myself. Don’t be afraid to ask a family how you can help. Be persistent if they say no at first. It might be a trust issue or maybe they can’t think of anything at the moment. Also, be aware that parents hear many empty promises from people, so let the family know that you’re serious. It’s hard to invest the time and energy training someone only to have them disappear never to be heard from again. Be patient and keep checking in. Ask, ask, ask and keep asking what you can do and, if appropriate, offer some suggestions.

Go with an open mind and no agenda. Parents are at the mercy of their loved one’s immediate medical condition. A crisis can happen in an instant and activities must be scrapped at a moment’s notice, so being flexible and able to adapt to any situation is important. And most importantly - if you commit to a family follow through with your promise. Don’t cancel at the last minute because you’ve changed your mind and want to do something else. This will only result in mistrust and disappointment for the child/adult with the disability and the parents. With a little effort, you will find how easy it is to be a “Super Hero” to a family living with disabilities.  

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January 10, 2008- All Rights Reserved 2008 – CT Disabilities Connections, LLC Copy Right 2008