Side Track-Diversity Discussion

I was going to continue my updates today, but besides getting up this morning with a headache and very little sleep,(see Updates, Updates Part 1), I came upon a post that not only did I feel the need to reply to, I felt the need to repeat it here.

Don't ask me why this tugged at me so hard. The subject matter is diversity and the school system. When I read this, I felt as if, unbeknownst to this mother (who I will not reveal her name, because I haven't asked her permission to do so) diversity extends so far beyond the areas she touched upon. Diversity takes into account the neuro-typical and non-typical children. It takes into account the chronically ill and the disabled. Diversity is not just a poor/rich, white/black/latino/native american issue. As the mother of two children, who do not fit the norm, I feel it is my duty (and my 2nd job) to educate people about diversity and the richness it can bring.

In another post, I read today, a fellow Disaboomer (www.disaboom.com)quoted an Illinois governor as saying "If you are able-bodied and breathing, we want you working." Another blow to diversity when the disabled unemployments rates would raise your hair and underemployment rates hit 90% in some places.

If you ask me, what I really want, I guess I would say, don't be so afraid of diversity. It may not always mean property rates are going to drop and school performance scores will skew downward.

Here is the post as written with my response.

--------------------------------------------------------------------------------
The new Secretary of Education Arne Duncan said he wants his kids to go to a diverse school. Author Eileen Kugler believes that a "good school" DOES NOT look like a scene from The Brady Bunch in her book, "Debunking the Middle-class Myth: Why diverse schools are good for all kids". According to Eileen, our diversity is our strength only if we go beyond celebrating diversity and we take the tough actions that champion diversity -- from supporting immigrants who live next door to having those real discussions with people from different races, ages, and paycheck levels. Check out her website for articles and commentaries she's written for The Wash Post, USA Today and more. http://www.EmbraceDiverseSchools.com.

We were faced with this exact situation. Our assigned school happens to serve one of the largest public housing projects in the state. The children who attend the school from a diverse background, which is wonderful, but the school has to design curriculum for the needs of the majority. Our son was reading before Kindergarten. We struggled whether we should send him to the diverse school or the "white bread" school. In the end, we chose the latter, primarily because we were worried he would be frustrated and bored, as well as the fact that we're not ready to have our kids be subjects of our social experiment.

Anybody else want to weigh in?


Reply by JudiElise 25 seconds ago

I am happy that you chose a school that would create the challenging and engaging environment he needs, but I chafe at when you offer that your child is not ready to "be subjects of our social experiment" or when you equate diversity to living near a public housing project.

I think the statement you make about the curriculum is unwarranted, unless you have examined the curriculum and found it wanting. Have you seen the curriculum for your child's grade? Does it meet the state standards and yours? If you have, and it fell short, then, of course, I applaud your decision. But if it was made without due dilligence, on what did you use to base your decision? As your statements stand, I feel as if you are developing (or exposing) a mindset that borders upon prejudicial thinking.

I realize that when people talk about altering the landscape of our public school system, this can be disconcerting. And sometimes, when these changes are made, this can lead to a lowering of standards in order to meet "Leave No Child Behind" mandates, but this is not always the case. Having the opportunity to learn and, eventually, work in a diverse society is one of the conditions, we, Americans have to work through as the world becomes more and more of a global-interdependent society.

Right now, this is seen as an asset for people entering the workforce today. Colleges teach classes (a required course at some universities) on the subject of culture diversity, because it has become so important to the future of America staying competitive.

I hope your decision turns out well for you and your son. You have started him out ahead of the other children, and perhaps, he will be given the opportunity to join gifted classes as well. But diversity will never take away his abilities nor dull them. Only the lack of opportunity and challenge will.

Short Break

This post is going to be a little different in focus and intensity.

After the attention my last post generated, I was completely caught off guard. Friends called to say how it affected them. Strangers called me a hero. I felt warm and accepted and humbled at the same time. My story resonated with so many people! It truly made me feel less alone in the struggle.

Also, I didn't realize it, but it took a lot out of me to write down the last two posts, especially the one about my oldest son. So many memories of hard times, poverty, death and plain ole' loss came flying back up as I wrote those words.

For the rest of that day, I could not help remembering so many other things. Like how we stopped going to church, the movies, outside festivals and fairs when it became obvious that the noise and length was too much for my sons. Or how with $1000 and a cellphone, we made the trek from upstate NY to Baltimore, MD to start a new life, just the three of us.

I used to call us the rag-tag band. I always felt that we were held up by mere strings that any moment threatened to pop. Somehow, they always held.

I remembered how my faith in God went from a philosophical hand-me-down from my parents to a full-fledged walk in grace, as I had no one but God to depend on. God and whatever strength he gave me.

As I get ready to do the last two updates (my sister and myself), I realize that if I do no more and write no more than what I have, I will have given something away that touched people. No one paid for it. People will be able to see that it is possible to walk in wonder, creativity and joy in the midst of constant, almost overwhelming emotional and physical struggle.

That ability or gift is greater than anything I could ever learn in my current studies. And more lasting than any other contribution. Thank you for letting me be a part of your living experience.

Stay tuned for Part 4 and 5.

Judi

Updates, Updates - Part 3

Well, next up is my oldest son. At the wonderful age of 16 (going on 17), he is the wonder of the family. How he got here, please don't really ask me. I do not have a degree in child psychology or development. I probably made so many mistakes along the way. But you need some background...

It is a mother's instinct that knows something is not right with her child. He was my first, but it was my mother who began to point out little things only a month or two after he came home. I had seen it too, but didn't know what to make of it. He needed to be swaddled. He hated bright lights and hot environments. We could never find a formula he liked and he couldn't grasp breastfeeding.

By a couple of months, he was sleeping in the basement (yes!) in a stroller. No noises with the close walls of the stroller made him relax. I hated it. The empty bassinet with custom sewn covers sat empty next to my bed, while I listened furtively to a child monitor late into the night.

But it didn't take long for me to realize. This kid was like clockwork. In fact, by the time I went back to work when he was almost a year, I handed the babysitter several sheets of paper, outlining everything he would do.

When he pooped. When he ate. How hot the bottles had to be. How thick the formula had to be. When he would sleep. I stressed to her: keep to the schedule and you will have a perfect day. Don't, well, just keep to the schedule.

Now, she must have thought I was crazy, but after two days, she said incredulously, that she had NEVER had a child stick to a schedule so perfectly in all her experience.

He began to talk. Clearly, everyone remembers "tank you" and "pease" at just around 12 months. He walked on time. Everything was going well.

Then suddenly, he began to go quiet. He rocked a little. He stopped looking at you when you called him. Soon, he stopped responding at all. You had to go up to him and talk to the back of his head. After awhile, he flapped, sitting and rocking in a baby rocker he was way too old for. He never picked up any crayons, pens or markers and doodled. He played with the manual can opener. He became preoccupied with trains.

In NY, parents start their little ones off early. By 2 1/2, he was in a daycare/preschool. Within six months, he was out. Wandered around too much, they said. Just left in the middle of class. Nearly left the building. We were back to babysitters.

By 4, he only whistled, grunted and pointed. Growled when you couldn't figure out what he wanted. He wore the same clothes until I hid them and said I couldn't find them, hoping he would attach himself to something new. Went to bed like clockwork and woke the same way. There was no eye contact, no kisses and never a hug. No smiles. He was never aggressive or hurful. Just a little wandering robot playing with his fingers.

At this point, I have to interject that this was the lowest point of my life as well. Within six months, I would lose my job, my marriage, my parents (seven weeks apart) and come to realize that my boy may have something called autism, something I saw on PBS late one evening. Oh yes, and I was pregnant with my 2nd son.

I am going to fast forward through the really hard years, raising two chldren as a single parent for 10 years. My son not accepted in various schools for very long. He had such problems with sensory sensitivities-the bells, chairs moving, people scratching their pencils on paper-drove him crazy.

We moved twice, saw loads of doctors who spat out lines like jackpot slot machines. Lines like, he may never improve (remember this was '95-'96), he would need years of therapy (not covered by any insurances) and you need to get on this or that waiting list for services. And, oh yeah, file for disability. *Sigh*

I remember asking God for one thing. Give me five good years, Lord. Give me five good, long years, and I will prove this kid could learn.

We finally landed in Maryland in 1999. By this time, I had the single mother thing down to a science. And, I knew how to ask questions. "Where does everyone else go?" "Who has a good program?" We ended up at Kennedy Krieger. Test after test finally revealed a diagnosis. PDD/Austism. It would be several more years before it was upgraded to Asperger's Syndrome.

In between is a blur I don't completely remember. Every moment, I poured something into his little thin body and mind. Language, music, news, jokes, colors; anything that got him to make eye contact, make a sound, ask for something with words, we repeated over and over.

One story always sticks out. Sorry, I wish I could remember exactly how old he was, but it escapes me. I remember a class assignment on the number zero. The assignment sheet was a lovely scene of grass, rocks, clouds. The questions asked how many rocks, how many clouds and how many sheep. The correct answer was zero sheep. He kept shouting 5. Over and over again, I went through the explanation. Still 5. Finally, I said, "Well, if there are five, tell me where they are?" He answered, "one is behind a rock, one jumped in the water to get a fish, one wandered off to look at a buttercup (!!), and two went home because they were tired."

I remember staring. Then it hit me. He added! HE ADDED!! And, he talked in BIG, LONG SENTENCES!!!

So, I quietly asked, "If all that is true, everyone's gone. How many sheep are left?"

"ZERO," he announced confidently.

Just imagine so many more years of that, and you have an idea of what went on. Fractions meant measuring cups with food coloring and water. Reading literature meant acting out the scenes or searching the internet for related videos and pictures. Homework took hours, broken up into little chunks. Storytime was always punctuated with extra dialogue and sounds. So much so, he was disappointed when he finally began to read well enough to only discover that all that extra stuff was not written in there. Mommy made it up. It kept him focused.

This is getting long, so I won't go into having to bring an educational lawyer in so he could have an assistant from 5th grade through 8th. How I changed things constantly to build in a tolerance for sudden changes (no meltdowns now, just lots of questions! Why, why, why!) How we still struggle to find volunter work for his community servce hours needed in high school(he is still very reclusive, and it is harder now to break routines).

We have the help of our local DORS (Department of Rehabilitative Services). (DDA wouldn't touch him. Our case manager literally told me I did too good of a job) He will have a driving assessment in March, two weeks of career assessments in June and 4 months of living on their campus when he graduates (2010). We have a social skills group he can go to, but with his brother's illness right now, this, unfortunately, has had to take a back seat.

Today, he is a tall, lanky, talkative fellow. One who follows rules to a tee, never forgets his chores and loves animals (future career, we hope!). He will graduate on time with a diploma. He is on no medication (none were found to alter his behavior; we did do trials). He understands he has "something called Asssspergers (he thinks this is funny), but revels in being different.

He is my wonder. I marvel every day. And, thank God, for an answered prayer.

Updates, Updates - Part 2

I was going to talk about me or my oldest son, but lately, I have been so wrapped up with the situation around my youngest son, I decided to go with his updates next.

I am not really sure where I left off. There is a litany of disorders: Dysautonomia/POTS, Delayed Sleep Phase Syndrome, Moderate Obstructive Sleep Apnea, and Chronic Fatigue Syndrome. Now, add to that the podiatrist's belief that he has early degenerative bone disease (fancy way of saying arthritis) in his feet and ankles. He is only 12.

All of this adds up to one homebound child. No school, no sports, no friends over for long periods, and since he fainted after visiting a friend's house for only 3 hours on Saturday-waking up to not even remembering going to the friend's house, there seems there will be very little visiting out either.

With all of this, add: 1. the three medications (down to two as of today, since one was causing insomnia); 2. a supplement to safeguard the liver and another to lubricate those degenerating joints; 3. the physical therapy twice a week to keep his muscles going; 4. the special high salt diet; 5. the at least 2 liters of fluids every day; you would think that we would not want for anything from doctors or insurance companies.

And yet, we have been through 3 pediatricians, 4 neurologists, a cardiologist, a pulmonologist, an orthopedic specialist, a sleep specialist (she is still around), a developmental pediatrician (still hanging on), gastro doc (gone), and 3 behavorial counselors (all gone). Now add in the physical therapists and a podiatrist.

Then, last month, I received three denials. One was from Social Security. Yes, he has a disability, but it is not severe enough. Yeah, right. The second was from the insurance company that was positive giving him an electric wheelchair would suddenly result in injury, death and destruction. So, no, you can continue to push around a 200lb boy by yourself. And I have yet to hear the reason behind the denial of the orthotics for his feet.

You can imagine that I am steamed and deflated at the same time. This necessitates the dreaded appeal process.

The appeal process with its additional clinicals, special letters from doctors and 90 days of calling back and forth for feedback is a major drain. And, I was already slated to go through this, so we could drive to Virginia to see yet another specialist.

So, here on my plate is 4 appeal processes. Someone come and haul me away!

But, back to my son. He, on the other hand, had begun to adapt, and is finally showing signs that he will make the best of his sudden changes in life. Of this, I am proud. A year ago, I would have wondered whether we weren't going to need a brief stint in a mental ward. He had gone from a bright, sunny, almost athletic prodigy from birth until 7 to a zoned-out, lethargic, overweight depressive by 10, and by 12, a fainting CFS sufferer with the mind resembling what one counselor called early Alzheimer's. His emotions were so raw and scary that I feared for his sanity. A year of counseling got all of us to cope with what we still don't completely understand. We are all ready to do what we have to do, even though no two days seem to be the same.

He has a Home and Hospital tutor from the county that comes 3x a week for two hours at a time. I am certain that he is NOT on the same level as the other children but I don't remember my 7th grade World Cultures (it was called Social Studies back then!) either. He will understand some algebra, have read through a book of poetry and will master creating Powerpoint presentations. The fact that most of his memory is unstable every time he faints makes it more profound and miraculous every time he passes a test.

And... I shall embarrass him in cyberspace. He has an online little "girl" friend. Yes, puppy love comes to the Unique Family! You can't say her name without a smile coming to his face. "Finally," he gushes, "someone like me!"

My heart almost breaks each time he says it. I hold back the tears and say without a cracking voice, "Of course, you are wonderful. Who wouldn't like you?"

Then the mother kicks in. Will he ever be able to drive? Go on a date? Get married? Hold down a job? These are questions I may literally have to wait 10 years for answers to (80% of children with dysautonomia go into remission in their 20s).

Then I look at the stack of denials and instructions for appeals and remind myself of my most important job. Make sure he has what he needs to succeed now. One day at a time.

One more tidbit to this update.

As we were slowly returning to our car from P/T today, he lets me know that I should be proud that my "greatest" accomplishments were turning out fine. He was referring to himself and his brother. I balked for a minute. Ha! Will my children be my "greatest" accomplishments? How about my career and my writing and what I give back to the community?

"Nope," he said. "What could be greater than a human life able to stand on their own?"

I teared up again.

Nothing, my lovely son. Nothing.

Microsoft's Inclusion Innovation Showroom

I really want to visit this place!

Now, the goal is to make these items affordable for disabled and chronically ill people, who are on fixed incomes without making them appeal to their overburdened insurance companies and flat-broke and frozen asset-bound agencies.

There has to be a way to get this into the hands,eyes, ears and fingers of more people.

Would love to hear comments.

I have Succumbed...

*Sigh*

I have finally and fitfully given in and created Facebook and MySpace accounts. Yes, even, old dinosaur me has decided to create a page and profile. Never mind my school (UOP) has created a profile page in my mailer attached to Google.

Now, let me start out by saying, I HATE MySpace! Most pages on their that I seem to stumble across are ugly - stationary backgrounds with moving written parts, black backgrounds and part of the text still in black (where did the rest of the sentence go?), garish, neon-type colors that make me run from my 22" screen. I could go on...blaring music, profanity, TMI, etc, etc. No wonder it got a bad rap.

But, I am one to be convinced. One of my best friends created a page and closed it to everyone, but her friends. SOoooo, I HAD to get a page to even see what she put there. Nice trick, you know who you are!

However, I have been slowly, but surely launching out into the online social scene and now belong to 4-5 communities, MyBlogLog.com (through Yahoo.com), Twitter and some other message boards. Plus, I have this blog. It only made sense to "go there." And I have.

But what I am really writing this about (this idea just popped in my head) is I would like to see some well-designed and beautiful MySpace pages. No flashing, writhing animations (so distracting), no grunge (is that still even around?) backgrounds.
Really, people, something good to look at.

I want you to give me an url so I can check them out. I might even showcase some of them, if I really feel they are good. Yes, this will be subjective. I am not trying to please everyone's opinion, just my idea of some decent aesthetics.

Leave me some urls, and I will promise to talk about them. I open my doors and eyes to what you've got.

Judi

Fibromyalgia & MCS Link

Found this article on My Disability Blog. More science I know, but all this research eventually leads to new treatments or meds (hopefully, more treatments than meds--I can dream, can't I).

You can click on the title to take you to My Disability Blog or go here for the original article as it appears in the American Chronicle.