Year's End
This year has seen a lot of changes in my family. My oldest daughter was diagnosed this past summer after seven months of medication trials, misdiagnosis, and misery. The baby had not one, but two surgeries and a host of other medical issues--including developmental problems. My "peanut" (middle girl) has struggled through a year of watching her older sister go through a host of issues. And mommy & daddy have tried to keep our heads above water through it all.
A word on the middle child: I cannot begin to imagine how hard it would be to be stuck in the middle between a developmentally challenged baby and an older sister with a neurobiological brain disorder. When I think of what she goes through trying to learn how to behave, trying to figure out life with an older sister, a roll model who often acts younger than she is. It broke my heart at the beginning of the school year when the family went to kindergarden open house. She cried and didn't want her older sister to come inside with us because she thought "Sissy would embarrass her." Although we assured her that sister would behave, we did not anticipate the effect of the crowd and noise on the oldest, and the resulting freak-out made liars out of us--again. The resentment that comes from such encounters builds up, and we must be constantly vigilant to help her learn to deal with such feelings. It's not fair that a child has to learn adult coping skills at the age of six. But, as we often find ourselves telling our children, we must accept that life is never fair and we just have to take it as it comes. Parents, please look out for your middle children! They're often too young to do one thing and too old to do other stuff. They need extra love and attention. Hug a middle child today!!!
An interesting look at COBPD: When I went for my interview with the Pupil Appraisal social worker at the beginning of our quest for school help, I found myself in the position of having to explain how this rare condition affects the daily life and functioning of my child. In the previous meeting with the group that decided if they would even bother with an evaluation, I faced a tough battle. "Well," they said, "even though her grades are very inconsistent, she performs well enough when things are averaged out. She's not failing. Why are you complaining?"
"She may not be failing," I argued, "but she's not learning well either. Besides," I continued. "Her grades are NOT the issue: the fact is that with her condition she does not function like a normal child, and she needs extra help." Much discussion later, they agreed to do the evaluation and thus the interview with the social worker.
The woman went out of her way trying to understand and was very reassuring. We discussed things at length, and then she made a connection that was so profound. My daughter has many needs like an autistic child. The only separating line is that my little girl is verbal. COBPD can cause autistic-like symptoms. I never realized it before. But just like autistic children, my little girl is very sensitive to "sensory" issues. Lights, sounds, smells, textures, even tastes can affect her and upset her enough to cause a panic attack. She gets very overwhelmed in crowds and either panics or gets so worked up that we have to leave. She has separation anxiety, she doesn't like to be separated from her "trusted adult" that she has attached to at the moment. Changes to her routine or environment cause her great consternation. Not to mention that although she is very friendly, her immaturity and inability to understand relationships cause her to lose friends rather regularly. After a while, very few children will play with her anymore.
Thus, she rides a special education bus. It makes her feel safe, because she has an adult aide on the bus to keep order. There aren't a bunch of rowdy children making too much noise, and she feels protected. Her teacher watches out for when she is getting overwhelmed and gives her a task to do that gives her a little alone time when she needs it. She also has a place in the classroom that she can go to be alone if she needs. Hopefully, this new year will see her with part of her day in the resource classroom for some one-on-one tutoring to help her overcome her auditory processing problems. (She can hear what you say but can't understand you.) Maybe, just maybe the neurologist will help find a solution to the other "problems" that plague her like the bed-wetting (and not always the bed, either) or the staring spells. Perhaps her councilor can help her gain a few new social skills this year. Maybe we'll finally hit a medication combination that works for her and she can have a measure of stability. Maybe. We'll see what the new year brings. Until the next semester break... good luck!
