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Wanted: a diagnosis for my son.

Sometimes I wish my son had cerebral palsy, or Down syndrome something definite and preferably a little visible. That thought bothers me a lot and makes me feel pretty guilty. Face it, it is rather unsettling for a mother to wish a disability on her child. Why would anyone want that? After a lot of deliberate thought and soul-searching, I have come to the conclusion that such thoughts stem from a deep desperation for answers and also for relief of the gnawing guilt that is eating away at my family.

My son, Allan, now almost five, is a beautiful boy. Born after a relatively tough pregnancy and delivery, he was a normal, healthy - but somewhat quiet - infant. At eight months, an accident left him with a fractured left leg bone. He seemed to recuperate from this completely. At ten months, he had an ear infection with a high fever from which he likewise seemed to recover. Then at fourteen months, he was the victim of a widespread salmonella food poisoning outbreak. He suffered from severe diarrhea and a high fever complicated by strep throat. After nearly a week, he began to improve. Life began to return to normal.

At his regular fifteen month check-up, our nightmare began. His pediatrician, while conducting a routine developmental screening, suggested Allan have some testing due to his lack of speech development. At eighteen months, a comprehensive psychological, sociological, audiological, and speech evaluation was done. He showed only a mild delay in the area of speech for which a home program was prescribed.

At two years, Allan's list of problems expanded and included an "attention deficit disorder" and possible emotional disturbance. At this time, an orthopedist also noted Allan's toe-walking and unsteady gait. By two and a half, Allan had begun having seizures - both grand mal and psychomotor, with and without fever.

At three and a half, on the basis of a neuropsychological examination, Allan was diagnosed as having a pervasive developmental delay complicated by a seizure disorder. He also demonstrated some autistic tendencies. Some of his recent test scores have now dipped into the mildly mentally retarded range. Each day brings new challenges to meet and new worries to overcome. It is hard to know what will happen next.

Allan has been in a preschool program with therapy five days a week since he was barely two. For his orthopedic problems, he now wears leg braces and has physical therapy. All of the tests from neurological to genetic, to metabolic, to orthopedic have yet to provide any clear cut answers for us. So, my perfect baby just keeps slipping further away and we do not know why. We read all the books we can get our hands on and suggest new tests to our doctors. We talk to other parents and pore over recent magazine articles. We have even run allergy tests and begun a series of shots in hopes of seeing some improvement. Still, we are in the dark about just what my son's disability is or what to expect.

Allan is very gregarious with an overactive body and an imagination to match. Still, he appears so "normal" aside from the braces on his legs. However, his behavior takes most people aback. He will take a stranger's hand and perseverate on a phrase from his own private game. If the person is polite, he will smile and ease out of the situation. A perceptive person may even ask what to do or what is wrong with Allan. In response to these questions, I do not know how to concisely reply.

Often, however, people consider him just weird and undisciplined. Some have even blatantly commented to that effect. One very narrow-minded man actually became enraged with my son. When I attempted to explain, he replied my son's only problem was his parentage. I was very hurt by the comment. This was compounded by my own self-doubt and guilt at not knowing the reasons behind my son's disabilities. My husband has become overtly sensitive to my son in public so as not to draw any attention to him and to avoid any embarrassment.

It is not that we are ashamed of our son. We love him dearly and we are very proud of all of his accomplishments. It is just the elusiveness of our son's problems that causes so much pain. So, as awful as it sounds, I have thought of what it might be like to have a child with a defined disability. To belong to a group or to be able to research children similar to ours in order to prepare ourselves for the future would lift such a great burden from our family. As I read the columns in EXCEPTIONAL PARENT's Family Support, or sit in on various local support meetings, it strikes me that "the undiagnosed disabled" and their families could sure use a support group all their own.
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Copyright 1989 Gale, Cengage Learning. All rights reserved.

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Author:Gundry, Mary
Publication:The Exceptional Parent
Date:Nov 1, 1989
Words:818
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