Different, Not Less

"You just don't know what a blessing that boy is to so many people--a pure blessing,"  Mrs. Browning gushed as she spoke of my son, her former student.  Mrs. Browning is an aide for a class for children with exceptional needs in Mississippi where we used to live.  She took care of my D-man, day in and day out, for two years and showered him with love.  

She took him to ROTC each day where he clapped in answer to roll call and the other night she let me know that they still called out D's name and the entire unit clapped when his name is called.  Chief Thorman said that they keep him on roll to honor the D-man. 

A classmate who is also a cadet in the ROTC program said when he saw D's picture on Chief's desk:  "I miss D.  Hi D. D is a child of God."

 Now we are in a new state and at a new school.  How can I tell them about my child whose test scores are so low that expectations of him reading or speaking are outlandish?  How can I say that he is special in a good way if you know him well enough to read his face. . .if you only knew his sounds enough to understand his pidgin? 

I am trying to psych myself up for the IEP meeting so that I will be prepared to do just that.  To help them understand D so that they can educate him (or he can educate them, whatever the case may be).  I know he educates me daily--testing the care of my speech when speaking of someone in that person's presence, testing my patience when I don't understand his refusal to sit on the toilet, testing my sensitivity when I have to remind myself that often he disobeys because he can't understand, testing my compassion when I attempt a conversation and I answer for him instead of waiting for him to tell me in his way.

In addition to what seems a herculean task, I am daunted by my encounter the first school day with the principal.  When we visited a severe-profound class where most of the children faced major challenges, the principal quips,"I can see why this class choice would upset you.  Thinking that your son belonged with these kind of children.  They can't do much, anything really, but you gotta put them SOMEwhere."

The principal of a school exclusively for children with exceptional needs having that kind of attitude toward her students. . .I just don't know what to say.  But I do know this.  If the class where D is now is not the BEST place for him, then I will withdraw him from the school and fight the system for a more appropriate placement.  Yes, I do have to put him somewhere, but I am NOT going to put him just anywhere.

De-gunk

Today men are working on the sewage line in front of our house. With a small excavator, they have torn up the road and with something that looks like a firehose attached to a generator, they have pumped out enough orangish clay to uncover two sewage lines. One is leaking; one formed of its own accord and needs to be re-sealed. This is not, in and of itself, interesting, I know. But I had told a few people just yesterday my reason for blogging was to get the "crap" out that is clogging my brain. And though I was not planning to blog today, the living metaphor in my front yard is compelling. I didn't even know there was a sewage line rupture in our yard. Just as I have been going through the daily routine, afraid to think about what's under the surface. So, out with it already:

In January, my eldest had an MRI done of his brain. He had been falling more than usual and his already limited speech seemed to be regressing. Two years prior he had been diagnosed with epilepsy and we thought that maybe the symptoms were related to uncontrolled seizure activity. We adjusted his medication and still no improvement. We did an overnight EEG at Children's Hospital in New Orleans and the good news was that there was no recorded seizure activity. The bad news was that there was slowing in the brain on the right side. So we scheduled the MRI. The child had had at least three MRIs of his brain from the time he was an infant and none had shown anything noteworthy. In fact around the time of his initial diagnosis with the seizure disorder an MRI had been done that looked somewhat normal. I was skeptical that an MRI not even three years later would show anything. But I was also afraid because I had the feeling that something was wrong. There's something to that "mother's intuition" thing.

So an MRI in Janurary of 2008 showed atrophy of the cerebellum. That would explain the balance problems, the speech regression, and the greater difficulty with coordination. When the doctor came in to discuss the scan, she warned to not look up the diagnosis online (as she knew I would do and did do anyway), but that she thought it was SCA (spinocerrebellar ataxia). This was a progressive neuromuscular disease. A progressive degenerative neuromuscular disease. He is going to lose more and more abilities until finally after he can no longer walk, swallow, or talk, he will die, most likely from breathing complications sometimes heart failure. He could live 4-5 years or he could live 40 more years. Different types of SCA work at varying rates. We would repeat the scan in 6 months to determine the speed with which his cerebellum is dying. As if that were not enough for me, when asked if I wanted to see the MRI myself, I assented.

I will never forget that image as long as I live. I know tragedies happen daily. Last week, a beautiful little eight-year-old was killed in a golf cart accident. Another 11-year- old the week before died from an incurable form of leukemia. Men, young men, with families and potentially long lives ahead of them are killed in Iraq, Afghanistan, and other war-torn places daily. I know. But this, this was my "tragedy"; this was my son. My delightful, often hard-to-manage, but always lovable son. Not only was he not going to outlive me, he was going to suffer. The cerebellum which normally has a cauliflower-like appearance looked like an oak tree in winter. Too much space. The neurons which typically renew themselves were refusing to do so. My son with the limited self-help skills would sooner or later have no way of helping you help him. Again, I know. I know that there are some precious children who are born without the ability ever to walk or to talk or to eat. I know that I should be glad he can do what he can do now. I should focus on the present. Live in the now. There is no future to the other way of thinking. Literally.

So, the repeat MRI--July 8th, a little over a month ago--showed no significant change. Thank the Lord, though his brain is still dying, it's slow going. Blood tests did not confirm SCA. So there's no label for this one. No way to pin down a prognosis. The only thing to do is live now. Love now. Smile now. And forget about labels for now.

Special Needs

I know I won't be blogging every day, but I had to add to my initial post. Although school administrators haven't always been my friend (except for 2 Rutherfords in two different states--uncanny), my son has had some fantastic teachers! Ms. Kristen, Ms. Deborah, Ms Sonja, Ms. Beth, Ms. B, Jana were (and now Mimi, ABear, and Naynes are) inspiring. They expected/expect him to learn, were/are patient in the teaching, and made every possible modification imaginable to help him to do his best and to have fun in the process. Thank you!!!!! I have much gratitude for those special teachers!

Wait a minute--I have to address this. The word special triggers another label discussion. What about the label: special needs? I mean, come on. What's special about changing the diaper of a teenager? What's so special about not being able to feed oneself? What's so doggone special about attempting to explain a person's jumbled speech to someone else not being completely sure I understood it in the first place?
I used "special needs son" gingerly when my son was around 4-5 years of age. I was not yet resigned to the fact that my child would always be different, but it did seem to be the reality for now. I thought "special needs" was a delicate way of saying that he requires additional care, extra attention, extraordinary assistance. Then I met a friend who said she hated that label. She said that there was nothing "special" about the needs. It gave me a jolt.
I guess it all depends on how you define special. The Oxford English Dictionary (the Compact version I just happen to have on my desk) lists the first definition as "Of such a kind as to exceed or excel in some way that which is usual or common." So technically yes, a person with special needs does have needs that exceed or excel what is usual or common. But what about the common usage of "special"? "Admitted to particular intimacy; held in particular esteem." This is the second definition and it is listed as the definition pertaining to friends. It does not apply in this instance, but it is more often what we mean by special, I think. "Marked off from others of the kind by some distinguishing qualities or features" is the third definition with part c reading, "Additional to the usual or ordinary." OK, so maybe special is right as long as it is not the sense that applies to people. But it sure doesn't sound right. My son is special, but I have no fondness or high esteem for his "more than common" needs. But how would "this is my son with additional needs" sound to him? No better than special, really. The emphasis is in the wrong place after all.
This is my son, D. He loves people, a good laugh, and music, and I get to be his Mama. A much better introduction. Let's just leave the "special" implied.

Labels

I say I don't like labels, but I should say my views on them are ambivalent at best. I went shopping for my birthday and was proud to say that I spent my money on clothes at Ann Taylor Loft. I am a jazz enthusiast and make it clear that soft jazz is not really jazz at all. Labels grant status. Labels distinguish the good from the mediocre from the downright bad. Think about wine: how carefully are those labels designed? Playful, serious, elegant, kitschy, robust: the label communicates the price, body, and bouquet of the wine.
But what about labeling people? We can get in trouble with labeling ethnicity and disability. It's much safer to label people politically. Usually folks don't mind being thought liberal or conservative. Religious views are another label most will own up to without rancor: Christian, Buddhist, Atheist. The trick is when one person's Christian looks more like another's Agnostic. But that's a topic for another day.
Back to the subject on my mind, labeling ability. When I was in school, I was tagged gifted. What that meant then I didn't really know, nor do I know now that I am all grown up. But I knew that school was easier for me than most and that there were some in my class who were what we labeled: slow. Today, I think the correct label is LD. What was the point of those labels? Not simply to indicate the speed with which one learned, but to better teach the child, right? So maybe those labels were somewhat useful.
Mentally retarded. How's that for a label? It's not politically correct to say that one. I don't see how it's a very useful one either. At least it hasn't been in my experience. It means that a child doesn't get speech therapy because it would be pointless. It means that a child doesn't get exposed to reading instruction as it would be fruitless. It means that a child doesn't get to interact with nondisabled peers because it would be distracting. It means that a child gets very limited amounts of occupational and physical therapy because the brain can only do what the brain is going to do. It won't train. It won't grow. It won't develop normally and any attempts to instruct that child will be futile. I haven't read the research to back these views, but it must exist because that is how children with mental retardation are treated in school systems and in the medical community today.
When my son was younger, I preferred the label: developmentally delayed. What it communicated is that the child would learn eventually, but learning would occur more slowly than the average. Now that he is over age nine, the federal government won't allow that label. But hey, my complaint is not with the federal government. They are willing to do what few people are. Provide care and financial help to families affected by labels. Sometimes, our government is the only advocate for people with disabilities.
Yes, some labels are desirable. Designer clothes, high-end electronics and fancy cookware need labels to confer status. But labeling people is something I'd like to change. And I don't mean in the politically correct way of not calling a spade, a spade, but in the more humane way of looking past the label, peeling it off, to find the individual hidden beneath.