About this Blog

Here you will find information and writings by Carrie Dalby, both fiction and nonfiction, as well as the ups and downs of life.

Wednesday, April 22, 2009

"Life is like a box of chocolates..."

At this point in my life I'm eating from the “bittersweet” section.

Most of you know that my oldest child is “special needs”. He suffers from a dysfunctional immune system, which causes neurological interruptions (N.I.D.S.). He has outwardly autistic behaviors as well as internal medical conditions (an active viral infection, food allergies, trouble regulating his body temperature, etc). He's been developmentally delayed since toddlerhood. He'll be eleven years old this summer but he's behind his peers in almost all categories and subjects. But he's also the sweetest kid I know, artistically inclined, and a joy to be with. He's doing a great service in my life, teaching me more about the world and myself (things I embrace and things I'd rather not deal with, but we are where we're at for a reason.)

Since he is my oldest I didn't know what to expect and therefore didn't know what I was missing when he failed to reach developmental milestones. Through years of medical intervention and close monitoring of blood work he is showing improvements, both on the numbers showing in his lab work and his developing of new skills and abilities.

Now with my three and a half year old son I'm seeing the miraculous blossoming of a healthy child. He's not asking the magic “Why?” questions every other minute, but wonders how, where, and when things happen. And that's when he's not busy telling me what he's going to be when he grows up. (Within the last week he's declared he's going to be a skyscraper builder, firefighter, race care driver, and concrete mixer.) This little guy is already “writing” letters to his friends and actively seeking information on anything and everything.

I'm experiencing all the stages my oldest missed because his body was sick and he wasn't able to learn/develop along the typical growth chart. I'm watching little brother surpass older brother with language, socialization, and imagination.

I'm seeing just how much my oldest is trapped in his own world. I'm realizing that after all the gains he's made over the past seven and a half years of treatment he's still grossly behind his peers... and even behind his younger brother.

I'm criticizing myself for slacking off my efforts with him during the past few years, feeling I've neglected the oldest by dividing my time to care for the younger two.

I'm over-whelmed with all the hours and effort I'm needing to put in with him to help him be better able to have a higher quality of life.

I'm aching for the world to see the beautiful soul who peeks out from my son amid the chaotic symptoms of a harsh illness.

But thankfully I'm accepting the massive journey ahead of us and recommitting myself to the up-hill climb.

Wednesday, April 1, 2009

Special Education Hoops

Monday afternoon I received a phone call from the principal at "A's" school. It's been a year and a half since the principal called- and that phone call was in regards to extreme behavior. Dr. Principal (yes, she has her doctorate) tells me right away that I'm on speaker phone and A's teacher is also in the room. Double whammy.

The principal tells me about the standardized testing they are doing this week and that the children in A's fourth grade class take their tests in the morning and he does his in the afternoon, in a separate room. (This set-up is part of his I.E.P. to allow him the best environment for testing, which usually translates to less distractions and more time.) She also says that the aide that usually works with him is assigned to a different child this week. THEN she tells me A will be sent to a “holding room” during the mornings and asks if I would be willing to just keep him home during the mornings and only send him in the afternoons this week.

I say “I suppose I could arrange to bring him later. Before lunchtime or after?”

She seems to be stumbling around her words, hearing the uncertainty in my voice, because she then tells me the room is a first grade classroom with a competent teacher... and two adults will be in the room with him. “How do you think he'd do?” in the other classroom she wants to know. I said if he was allowed to do activities he enjoys he should be fine. And then she remembers that he rides the bus and me having to bring him to school might be a hardship.

I have the idea and agree to keep him home in the mornings IF he becomes a distraction to the first grade classroom.

I sent him to school Tuesday morning with a new box of crayons and notebook, knowing he can happily draw for hours to keep himself occupied. There was no phone call or note so I assume he did fine. So, I sent another new notebook with him today.

But the longer I think about it, the term “holding room” conjures images of animals locked away. As if my child is livestock to be moved around when convenient, or inconvenient as it may turn out to be. That Ammon's structure/routine is not important to them since they are willing to toss him into an unfamiliar room, with no adults (or children for that matter) who understand his quirks.

Hear mommy growl under her passive facade.

It appears he won't be getting any schooling this week, just babysitting and standardized testing. Maybe I should just keep him home and do workbooks with him here.