Special Parents Raising Special Kids: How to Get Help

Posted September 30, 2010 by

I recently asked on my Facebook page how many of my friends have special needs* and are raising special needs children. I believe, at the time of this writing, we are up to two other parents who are considered disabled raising disabled children. The reason I ask is that my husband and I are disabled*. This fact presents many of life’s challenges just for our personal lives, never mind how we are a spouse to one another or a parent to our children. And I wondered just how many other parents out there have this unique situation.

It does seem to be a small population compared to parents in general. I could not find any statistics that puts the numbers out there in black and white. I would say that more parents have disabilities but maybe they do not know because they adapted and learned while growing up and so were never diagnosed with anything. But for those who do know that they are disabled, raising children who are also disabled provides more stress than the average parent, in my opinion.

For instance, my physical health is at an all-time low. I recently battled cancer and yesterday I was told that all remaining tissue in the mass in my chest is now “dead.” I am going to be facing a long road back to “normal.” The particular physical issues I have are called fibromyalgia, osteoarthritis and degenerative joint disease. All three cause pain. Fibromyalgia has a lot more issues (secondary diagnoses) that come with it including chronic fatigue and insomnia.

In order to feel the best with fibromyalgia, I have learned through experience it is best to do as much as you can, without over doing it. The more you do, the more you can do. If I exercise for 30 minutes in the morning, I tend to have more energy to last until about 3 p.m. Then, if I exercise again, I’ll have enough energy to get through past supper time and maybe all the way until the kids go to bed. I also have noticed that if I exercise twice a day, I actually get better sleep later that night which allows me to sleep better.

The problem has been that, with the cancer, I have been unable to exercise. Between the effects of chemotherapy and radiation, I have not been well at all. The chronic pain from the other two health issues I have also prevent my being able to exercise with any type of impact (such as running or jogging or doing aerobics). The medicine I take has a side effect of making me drowsy and loopy. Hard to function in that condition, never mind exercising!

Well, all this also takes a toll on my family. My children require me to be “present” in their lives. While my son can (and does) cook supper for the family at times, it is not something he should be required to do. He’s a child with his own issues. While my other son can (and does) do chores around the house, it should not be his responsibility to do all the laundry for all family members. When parents are disabled, it can lead to a situation which is referred to as “parentification.” This is where the child takes on the role of being the parent and caring for the parent as if the child was an adult responsible in matters that the parent usually takes care of.

Parentification goes way beyond teaching the child to be “independent.” Parentification goes beyond teaching a child life skills. When a child becomes the responsible party for the majority of chores in home, making phone calls, running errands and so forth, that presents a world of challenges for that child and the adult the child is caring for.

Now… what if the child is also disabled? What if both the parent and child are incapable of performing certain chores, say laundry? Or cooking? What does a family do then? What can a family do if the parent(s) and children are both disabled and unable to perform certain functions within the home that are necessary to the general well-being of all family members? What can a parent do to avoid parentification for a special needs child?

A parent can contact their local Department of Health and/or Human Services. There are provider services that can be offered to many individuals with disabilities. Such services include help with laundry, dishes, sweeping, mopping, bathing, running errands, etc. for the adult in the home. Some states even offer services to help a disabled parent care for their disabled child with similar services for that child because the parent is physically incapable of performing them (i.e. giving the child a bath).

By using these services, a child’s responsibilities within the home can be limited to that of a normal level (that goes with teaching a child independent living skills) and the child is free to be a child. By using these services, a parent is able to focus his or her attention where it needs to be or where it can be directed as the parent is able (i.e. sitting at the table doing homework with this child versus doing laundry because the parent can sit but the parent cannot bend over or stand up).

It may be embarrassing for individuals to admit that this is a problem. There may be a fear that the child will be taken away if a parent admits that they have these difficulties. That is not usually the result of asking for services. The Department of Health and Human Services goals are usually in line with family unification and/or reunification. The goal of the agency is to provide services so that the child can remain with his or her family for as long as possible. It is not the goal of the agency to take a child away from his or her natural family just because there are some issues within the home. If there is a problem in the home that prevents the parent from providing necessary care, and the services offered can fill that gap, it is unlikely that the child will have to be removed from the home.

As for the possible embarrassment, it is easier to deal with it when one understands that it’s okay to ask for help. That does not make you less of a parent to need the help. In fact, asking for help when needed shows the parent to be a responsible parent. When a parent sees that his or her child has a need, the parent fills that need. It does not matter if it is the parent that actually provides the elements necessary to fulfill that need; it only matters that the parent makes sure the need is fulfilled.

For more information, please visit the U.S. Department of Health and Human Service’s Office on Disability by clicking here http://www.hhs.gov/od/index.html

*Normally I do not like the word “disabled.” I prefer “differently-abled.” Why? Because we are all disabled in one way or another. We all face challenges as life goes on — and it can change from day to day or month to month. However, there are some challenges that are more difficult than others.  Issues that prevent someone from carrying out certain tasks are usually called “disabilities” because they cause a person to be unable to perform, either physically or mentally/cognitively. Also, not every challenge a person faces is listed in the DSM-V (the medical book that lists all the possible diagnoses). So, for this blog post, I used the word “disabled” and “disabilities,” and “special needs” to refer to those challenges that are listed in the DSM-V and that provide those extra-difficult challenges in life.

About

Heather is a mom of two special needs children and has spent over a decade working with them and other children who present challenging behaviors. She has been writing for over 20 years.

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