Respite for Parents of Children with Special Needs

Respite is Essential for Everyone!

By Michelle Haney, Euro-Peds National Center for Intensive Pediatric Physical Therapy

Everyone needs some rest in their lives. In this day and age, we are all running around day to day filling every minute of every hour. This is true of the average person. Now add a child, or several, to the equation. Now add on the responsibility of caring for a child with special needs. You are busy and need a break. This is one factor underscoring the need for Respite Care. The next factor is that, somewhere in all that craziness, you need to fit in the recommendations of the physical therapist, occupational therapist, speech therapist, behavioral therapist, teacher, etc.  But what is most important of all is that you need to be the loving parent your child needs. Why not find someone else to help with the extras? 

Sometimes it’s hard to find a good caregiver you can trust with your child. A good suggestion is to turn to the specialists in training. As a physical therapy student, I was always looking for opportunities to learn more about the special needs population that I looked forward to working with as a professional. Not only did I want these experiences, but they were required to be considered for acceptance into the PT program. If I found an opportunity to work with a child, I was excited… and if it was a paid opportunity, I was ecstatic! Reach out to local colleges and universities with PT, OT, Nursing, Special Education, and other programs. Mail, fax or drop off a flyer describing your child and your needs (with tear-offs of your contact information at the bottom). You’re almost guaranteed to find an enthusiastic student just waiting to help. Interview them. Ask them what experience they have and why they want to go into the healthcare field. You’ll quickly know who you are most comfortable with. Hopefully you’ll find more than one person to get to know your child. Not only is this helpful to you, but very important for your child. They get a new friend—someone who visits them on a regular basis. They experience new things.

It took me years to convince my Mother, who continues to care for my adult sister with special needs, to accept some respite care. Besides my Mother definitely needing a well-deserved break, Annette needed it too. My sister had only known how our Mother fed her, changed her diaper, put on her clothes, etc. What if something happened and someone else was doing all of those things? How difficult it would be for Annette to adapt to. By allowing others to help, you are helping your child as well. It may be an opportunity for both of you to learn that others can be depended on and trusted to care for your child. Sure, no one will care as deeply as you do or do things the same exact way, but there are others out there that can understand, comfort and care for your child. Once both you and your child realize this, a whole new world will open up to you!

According to thefreedictionary.com, the definition of respite is “a usually short interval of rest or relief.” It also lists: “to come up for air, to take a breather, take five, take time out, to relax, to rest, or enjoy a respite. The phrase implies that one has been so inundated with work or immersed in work that he is in danger of drowning, figuratively speaking; like an underwater swimmer or a diver he must pause to refresh himself and recoup his powers for the next lap.” Let’s face it, you have many laps to come. Why not recoup and swim your very best? You don’t necessarily have to go to the spa or golf course (although that sounds very nice, doesn’t it?)…it may be going to the grocery store to get the week’s groceries with only a cart to maneuver rather than both the cart and a wheelchair; or without having to worry about the thoughts of others while you address your child’s third “episode” in the cereal aisle (smile). At first, it might be a retreat to the basement to read a book you’ve been wanting to read or spending time tinkering in the garage…you don’t even have to leave your house if you don’t want to. Maybe it’s going to the movies with your wife or husband for the first time in six years. You need that time for each other. Think of all the possibilities. They can be yours…you only have to ask for help.

Many states have county- or state-funded programs to help with respite care. Families will qualify for different amounts of respite based on several factors. If you don’t have a case worker already, call your community mental health department to request one. Ask what kinds of programs are available. If you don’t qualify, that’s okay…turn to those eager students who may volunteer their time. They could be stretching those little hamstrings while you run your errands or get your massage!

Michelle Haney, PT, MSPT is a pediatric physical therapist and the Director of Euro-Peds National Center for Intensive Pediatric Physical Therapy in Pontiac, Michigan. Visit them online at www.europeds.org.