Especially in today’s world, words have meaning and emotion. We have even changed medically based terminology into insults, thus rendering it useless. We label groups with special needs and have the Special Olympics at the same time, we enlist Special Forces. It is all so confusing. After much thought, we have landed on describing our fourth child, Abigail, as Severely Disabled.
Abigail has cerebral palsy with spastic quadriplegia. Essentially, her muscles are so tight, it’s hard for her to move. She has a host of other issues to accompany this disorder, as well. Because even the muscles in her jaw are affected, it’s difficult for her to eat, and get enough calories or nutrition from her food, so she is tube fed her meals. Due to some brain injury at birth, her cortical nerve was damaged, so she is legally blind. Her eyes work and are healthy, so she CAN see, but her brain doesn’t always get the message of what she IS seeing, since those messages travel along the cortical nerve. Her ability to communicate is severely limited, since these same spastic muscles won’t allow her to use sign language, either. She CAN communicate, but you need to get to know her over a period of time in order to learn her body language and cries in order to meet her basic needs.
In essence, she can’t walk, she can't talk, she is tube fed, wears a diaper, and she is wheelchair bound. To top it off, the same brain injury that caused her cortical blindness also caused some mental retardation, none of which we know to what extent. And she has Seizure Disorder. Therefore, she is completely reliant on others. On us. For these very reasons –the very complexity of her care– we don’t use the term, “special needs” for our disabled daughter. we don’t reject the term, we just don’t feel it applies to our daughter. She IS, and always will be, severely disabled.
For example, If we asked someone to watch our special needs daughter, they might expect a child with learning disabilities, maybe a typical child in a wheelchair who can talk and interact with peers, or perhaps a child with Downs. They may have neighbors, cousins, schoolmates, or someone they know with similar issues. They would be somewhat familiar with some traits or behaviors. They would not be expecting –nor ready to watch– our daughter. Even if they know someone with cerebral palsy, each person’s condition varies so vastly. They still would be by no means prepared to watch our daughter.
Along those lines, if we mention our daughter is severely disabled, their mind would most likely go straight to someone in a wheelchair with other equipment attached. Our daughter may not have monitors, nor breathing equipment attached to her, but she does have a custom built wheelchair that fits her needs. It certainly isn’t a regular wheelchair, commonly seen in hospitals or nursing homes, or even the type offered for rent at zoos or amusement parks. This one is a unique beast custom fitted to her body and her needs.
There certainly is a time to use the term “special needs”. In fact, we believe it could quite possibly be applied in part to some of our other children. Some have anxiety issues, others have food allergies, and several of them have chronic migraine issues. All of these require special attention at one time or another. We have a child whose throat is allergic to certain foods, and will close up if the wrong food is eaten, so Benadryl is carried everywhere. One of our children will be sent into an asthma attack simply from smelling cinnamon. And yet another child is allergic to sun screens. Forget the sun, the sun screen causes painful red lobster skin! We have had our share of emergency room visits, visits to specialists, and testing done. We are not strangers to kids breaking out in hives for no apparent reason, or looking like a lobster with hot flesh, but not being sunburned.
So, in our minds, special needs can describe almost any child. All children have some sort of issue that parents are constantly warning others about until such a time as that child can monitor their situation themselves. There are those with diabetes, anxiety, asthma, and severe reflux. So, our complex child is not special needs by any means. She is severely disabled.
Even if you don’t agree, can you at least see our perspective on this?
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