Life is not easy. Especially when you are in a family of invisible illnesses and disabilities. It can be serious, funny and downright hard! But we make it. Just like everyone else. We just do it in a different style.

Thursday, October 30, 2008

A New Direction

I am in school.

Yes, I have enrolled in college...again. Now that I have started again, I can talk about the many attempts at going to school. I can talk about how I wished, dreamed and cried over this. How it shaped my life.

You see, I always loved to learn. Whether it was for a class or not, whether it was required or not. I loved to read and collect the books I read (see my library at: There was nothing I wouldn't try to learn and when the internet took off, I was there, realizing how much I could learn right in the comfort of my own home.

I started out at the top of my high school class (number 12 out of 604 students-top 2%). Everyone had very high hopes for my future. Everyone, but me. Little did everyone know the struggle I had just to finish my senior year. The migraines that would plague me through my college and work life were just beginning. My back already had a life of its own, slowing me down and making physical activity so painful. Maybe everyone should have known, since I took a semester off after graduation. Six months of doing absolutely nothing. Not even work. But when January 1984 rolled around, I thought I was ready. I had rested and was shouting, “Look out college life, here I come!”

Not even two months in and I contracted an eye infection. The doctor at the infirmary said it looked like someone used both my eyes for pincushions. What he couldn’t explain was the fatigue and weakness. I had friends lead me around campus at night because of light sensitivity, feeling the wind against my swollen, burning eyes, wondering if I was going blind. Six weeks later, still wearing sunglasses, I could see, but would suffer with sun-induced migraines for many years after. I only stayed another semester and gave up. I couldn’t do the reading, either for the psychology major or the literature minor. And suddenly, there was a new problem. I couldn’t remember anything. Not from my notes or anyone else’s. My near photographic memory was shot. I would suffer with this until this day, using Post-in Notes, lists and electronic memory devices to fill in all the missing gaps.

Dejected, I came home and tried again, this time while I was working. Perhaps I wasn’t cut out for university life. I tried a community college. Here I did a little better. But into my next to last semester, I gave up again. Fatigue, migraines and the constant back pain was overwhelming. I tried to live on Tylenol and couldn’t.

Over the next few years, I would try again, and again…three times, three more schools. Three abysmal failures. Finally, I gave up for good. I drew the curtains closed on a dream, and put it away. Maybe, I was meant to be a drone; work my fifty years in a cubicle and retire with the gold watch (or whatever it was they gave women). I went out into the workforce and started to climb the ladder.

And what a ladder! I started as a walking messenger, making $3.80 an hour. Sixteen years later, I would command a convention coordinator’s position while covering administration for a CEO/Founder and a Director of Business Development. I loved it. I was respected and admired for my drive, my calm demeanor when everyone else ran around like chickens. I asked for a $5000 raise and got it. No one wanted to see me leave. Except the woman across the street who ran her own business and offered me even more.

But again, I was living a nightmare. I could barely make it in five days a week. Because I was so capable, nothing suffered, but everyone knew. They chalked it up to being a single parent, raising two boys, one with autism, all on my own. What they didn’t know was the fatigue, the back pain and flu-like illnesses every weekend were taking its toll. I routinely ran out of steam by Thursday. Finally, I tried to come in one day to cover when I knew I couldn’t. My boss was shocked. I was bent over and slow. I had to think slow and deliberately before I spoke and though I could still do my work, it was demoralizing just to look at me.

That afternoon, the rest of the staff staged an "intervention," called a good friend of mine to pick me up and sent me home. I felt horrible. I took some time off and tried to go back. Nonetheless, August 2001 was the last time I worked full-time. I would never see accomplishment like that again. Though I would work part-time at various places and even try to run a small graphic design business out of my home, I became worse and worse to where I finally applied for disability in 2003 and won it in 2005.

What does all this have to do with school? Well, all that time, I thought, I couldn’t go to school again. How many times had I tried and failed? Why set myself up for failure again? I thought I would have no chance at learning something to change my future. And I still thought that way, until a month ago.

The reason is technology. The same technology that connects me to so many wonderful people here on the internet has given me the chance to finish my education. The chance to go when I can go. Learn when I can learn. Read when I can read, in enlarged letters to save my eyes. In chairs to support my back. I have the chance to do what I really want to do. Learn and succeed.

Has it been easy? No, a migraine kicked in the first day. But I have a computerized magnifying system now that keeps the eye strain and pain at bay. I don’t overdo it and the classes and readings are structured that I don’t have to overdo it to succeed. How about my memory? It is still fuzzy. But I can print out notes and post them around my school area. I have charts on my computer desktop that I can open at a moment’s notice. I have the ability to use audio and a CCTV in order to facilitate every aspect of my education. It has been heaven!

But am I a successful student, you may ask? After 20 years, are you even capable? Well, below is a copy of an email I received from my communications teacher. I didn’t put it here to brag. No. I cried when I read it. I cried for the lost years and the pain and the failure. I cried for the feelings of disappointment and the fear of not having a chance to truly succeed again. I cried because here I sit in a room, knowing different and believing again: I can learn. I can succeed. I have not failed.

Everyone, I am grateful. Grateful to a system that allows me to try again. Grateful to a university that is set up for a person just like me. Grateful to God. That wonderful God, who gives second, third, fourth, fifth…and sixth chances. I have learned to really understand that.

So, here I go again. Pray for me as I do for you.



My teacher’s email:

You are Excellent!
Posted: Thu 09/18/2008 01:19 PM,
by: MM

Hi, Judi!

I read you[sic] response to my post on Persuasion vs. Decision and I couldn't help but feel the strength and energy from such an excellent learner as you--

As your classmates have commented, your energy, passion and excellent insights as well as ability to express your ideas are inspiring. This class is so lucky to have you. Despite of what you know what you can do, you remained humble with no air of arrogance on your part. You have also been very supportive of your classmates. You see? I told you that you have great leadership skills... I pray that you will be blessed with more energy and light.. Keep shining, Judi! Keep spreading the light and the energy.

I will miss you and I will remember you ever... I hope that we can continue to keep in touch even when you are no longer my student.

Been a Bit of a While...

...since i posted something. I feel guilty. Almost nine days and no postings! Not that things haven't been happening here but just no time to put them down.

Let see, nearly left the husband again. Seriously. He is a mess and I love him and all, but I am beginning to think marriage is greatly overrated. Since I have these miserable things called morals, I will probably just put up with him and not bury him in the backyard. Though everyday, I understand that show "Snapped" more and more.

Actually that show is really off the wall! But this was about catching up.

Okay, hubby's mom is out of the hospital. Oh I don't think I wrote that. Must have left it on Twitter. She had a triple bypass and survived. She is a feisty, strong little Italian who would remind you of Estelle Getty (RIP). She had to go back in for blood clots on the lungs, but is home resting now. Some serious prayer sent up for her. I don't know what my hubby would do if his mom passed.

I am pulling young son out of regular school and putting him in the Home and Hospital program. The reasons for this would take up a post by itself and I will write it when I calm down. Right now, I would probably break all decency rules and have the blog shut down and that is not my purpose. Blogging should be cathartic, not catastrophic. I'm trying. Trust me. Real hard.

Also, got my final grades from school. Another thing that can take up a whole post. Plus there is a post that was written before final grades that has to be posted first.

So, it looks like I am going to be posting more tonight. I will try to get to everything.

TC and GB,

Judi - the "real" pitbull" soccer Mom

Tuesday, October 21, 2008

Cicadian Clock and Memory

If I sound like a broken record on this, please forgive me. Since it affects my family so deeply, it is kind of a broken record in my house.

At this point, only myself and my oldest son with autism have a half-way decent memory. My sister, husband and young son...oh, just forget it.

All three seem to have sleep issues and the memory, especially short-term is just terrible. I don't even laugh about it anymore.

I just take the peanut butter out of the freezer, pick up the garbage bag from the middle of the floor where someone left it, retrieve my sister bank card from the back of my van and keep going.

This article is an animal study, but it hits home with us. Another link in the chain of loss thoughts and disrupted sleep. Enjoy.

Circadian Clock Could Help Learning Retention

Your circadian biological clock, which regulates the timing of periods of sleepiness and wakefulness throughout the day, may actually be helping you remember what you learn, according to a study in the Proceedings of the National Academy of Sciences.

Researchers at Stanford University's Department of Biology compared tasks between two groups of Siberian hamsters — one with their circadian rhythms removed by non-invasive means and the other a control group. In a delayed object recognition task, arrhythmic animals couldn't distinguish a new object from a familiar one only 20 minutes or an hour after training.

The researchers concluded that internal circadian clocks contribute to memory function in a way that is independent of sleep. "In aging humans, one of the big things that happens is the circadian system starts to degrade and break down," biologist Norman F. Ruby, who contributed to the study, said in a press release. "When you get older, of course, a lot of things break down, but if the circadian system is a player in memory function, it might be that the degradation of circadian rhythms in elderly people may contribute to their short-term memory problems."

Original article at:

Behavior Modification

This post was actually a reply to a discussion about ADHD and autism. They wanted to know what we had done that gave us success over the disorder.

Having a 16-year old who has overcome so many obstacles in this life, I gave some background on how I raised my son. It was not easy, by any means. And, I had very little help, except for the internet, which back in 1992-1996, was not the big, beautiful web we have today. Most of what I did is trial and error and whatever worked. Here is my response and take on behavior modification.

Hello, All,I will try to remember what I did because he is now 16 and it is hard to think back so many years.

When he was a baby, we swaddled. Without it, he would hit the walls of the bassinet every other minute and no one got any sleep. Actually, the first six weeks, he slept in a stroller, swaddled in the basement. Now, before you call me cruel, it was the only place with no light and no noise. We used a baby monitor to know when he "really" woke up.

I learned very early on that he needed a routine or we would have a basketcase on our hands. I went back to work early and had a babysitter. Thing was, I walked in with a schedule of two pages! Everything was listed down there from when he would eat to when he probably made a bowel movement. She thought I was crazy, but after two days, she was amazed that everything I wrote down, complete with times, was accurate. If you followed the schedule, he would be fine. If not, screeching baby at ten o'clock.

His food has to be a certain temperature. The bottle nipples had to be a certain size. Too big and he would choke, too small and you got screeches. He couldn't figure out breast feeding, so I didn't. Of course, he had favorite foods and that was it.Life took on a very ordered tone. He has more autism/ADD than ADHD. Not very hyper, though he rocked and flapped regularly. He hated loud noises, crowds (no birthday parties or movie theaters to this day), bright lights and certain materials.

I am saying all of that to say this. The more I kept to a schedule, the calmer he was and then we could do some work together. Change had to be brought in very slowly. Everything had to be introduced. Foods, people, places, school, toys, holidays, etc. For example, a new person was never just brought into the room. He had to hear their voice somewhere in the house and we would wait to see if he would get curious. Most times, not. When he was around 5, it took him a year to speak directly to my best friend who was over almost every day.

As for language, he started talking around 12 months and then stopped. He didn't use regular language again until school. He made up his own language and used sounds. I didn't care what it was, it was communication and we responded. We called it Andrewisms. He still does it to this day, creating language. An old one was Fuf-fuf, it meant cartoons. We figured out later that I kept calling silly cartoons "fluff" and he made up the word to use when he wanted to watch them. Today, we have "linner." It means the meal between lunch and dinner, like brunch is the meal between breakfast and lunch. Whatever it is, we use it.

I am sorry this is long, but I feel very strongly about this. We hardly had any help. I once had a director of an autism center ask me how we taught my son humor. I told her, we laugh a lot and love comics, cartoons and jokes. If he didn't get it, we explained it. We even taught him what laughter sounded like. After many years (like around 10 years) he finally understood. The first time he laughed out loud, I cried. Most of his childhood, he hardly even smiled. Now, all his teachers remark about his cynical, sardonic wit. It is not a "monkey," but his own take on what we taught. EVERYTHING he does today, came that way. As he got better, I built in change and flexibility. Now, at 16, he can accept change on a dime; something almost miraculous in the world of autism.

I don't want anyone to get the idea it was easy. Many times homework was finally finished at 10pm. Or just not finished. He didn't get an aide in school until 5th grade and they promptly took it away in high school. He has the smallest amount of accomodations and hardly any speech and language help. He hardly ever get an A in a class, but his Cs are golden to me. We hardly ever went anywhere, including church. I didn't see the inside of a movie theater for nearly 12 years. And, he was not with me.

I am thoroughly with McDannells on this. We have to teach these kids to be confident in themselves and that they will find a place in this world. Excuses don't matter to the world at all.

Other than that, I give this piece of advice. Do what works. If you have to empty the cupboards and teach fractions using bells, whistles, every measuring cup and spoon, and food coloring (my personal favorite!), do it.

And don't make a monkey out of anyone. I would rather my son be eclectic and innovative than a drugged zombie working in a factory somewhere.

Monday, October 20, 2008

A Year in a Nutshell

I thought I wanted to slowly go through this last year, but I find that my mind REALLY doesn't want to remember it.

Between the ignorant and cold doctors, the many fruitless visits to emergency rooms, the insomnia that ensued because I was just so afraid to leave him alone, it is too difficult to look back and write it all down. Probably, I will make mention of an old event here and there as I write further, but to drag it all out and relive it, is so painful. Let's just do the abridged version.

My son went from a rambunctious, devil-make-care child to a cautious, shy, anxious little giant. I say giant, because he stands now at 5'8", 199 lbs and is just 12. He is considered obese now, but was always larger than his peers. The obesity has set in because he is now exercise intolerant, and cannot stand more than an hour of any movement without paying for it later. We have so many things here for him to use for exercise, but causing him to use up all his energy stores in 20-30 minutes of exercise means you have a sick child for the rest of the night and possibly the next day. Needless to say, we don't do that.

I do want to mention all the doctors we went through. Four neurologists, two cardiologists, two pediatricians (our last one has just gone AWOL on us, not returning phone calls or faxes since March 5th). I could write a whole blogpost on doctors, but I have learned to tone down the heat. At one point, I hated them all. But I realize that doctors are human and why did I think all the beautiful, compassionate humans went into the medical field? There are good ones and bad ones. We saw our share of both. For now, our medical team consists of a developmental pediatrician (who first correctly diagnosed him), an ENT who's office staff is fabulous (for the sleep apnea), one GI doctor (for gastro issues) and what has to be the best therapist in the world, who from the beginning, never doubted us when we said this was not a psychological issue.

We see the psychiatrist today. My son has a great deal of anxiety about becoming a chronically ill person. I am hoping to be able to help him navigate through these tender years and still retain some confidence and self-reliance. I am hoping the psych will come on board, but he started out combative. I pushed right back. It is amazing how someone who never met you before attempts to tell you all about yourself after only 10 minutes of dialogue. I am going prepared with printouts of my son's disorder and see what happens.

The end result of the year was that my son never made it to middle school. Not really. He only made four days his first two weeks and had to be brought home. He is attempting to return part-time now, but since August 2007, he has been homeschooled (by tired ole me!) and then tutored by a teacher through our County. Both attempts have produced very little by way of educational advancement. I was too close to the situation (I swung between being overly cautious and Mommie Dearest) and the tutor needed to return to the sixties. LOL! We both did a banged-up job of trying to get information into a brain now permanently changed by OSA and Dysautonomia. I can see the humor in the situation now, but at the time, it was far from funny.

Imagine trying to get a brain deprived of oxygen day and night, sedated on seizure meds (he was misdiagnosed with seizure disorder of the temporal lobe in the beginning) to remember the ancient map of Greece and Sparta, the agricultureal pursuits of ancient Mayans, and why a penny turned green when exposed to vinegar! It was a hoot! Everyday was an adventure. Who needed the Army to be challenged? I am actually happy that we are attempting to return him to school. Yes, I still nailbite, but at least I am not trying to explain exponents and least common factors anymore! How I do appreciate teachers after being through all this!

There is an old song that says, "What a difference a day makes." My line is "what a difference a year makes." We have thoroughly changed within this year. No more taking life for granted or sitting back and waiting for things to happen. Even though I have been disabled since 2003, I still operated in my old life. I had 1-,3-,5- year plans. I was a methodical, pace yourself kind of person. I had been on the internet for 20 years and didn't embrace half of it.

Now that is all changed. I am writing again (this crazy blog calls to me!), I am taking pictures again (school major was photography), and I am about to buy a vidcam. Why? Because I don't want my son to miss a single opportunity to enjoy what he has left.

One quick story from this year might explain it. After taking my son to a neuropsych evaluation last year, the evaluator came to me, saddened and obviously concerned. She questioned me over and over about my son's habits and routines. Then she began to give the bad news. My son's memory was shot. He literally did not have much left of his short-term memory and his long-term memory would be sketchy. She likened his brain to a polaroid camera that took shot after shot, but then threw the pictures away as the next one came out. The analogy was stark and very cold.

At first I was devastated. How can anyone learn if they can't remember? Even visual or audio cues did not bring recognition. The therapist began to compare him to Alzheimer's and traumatic brain injury patients. Then I decided to do something. After raising an autistic child, I knew that repetition does help. I decided to fill all the moments. Continually fill them with memories, conversation, laughter and sensations. Pictures are left out of albums and placed in huge frames to be seen at a glance. Music is played over and over again (I actually like that sometimes). Certain sayings are repeated especially if it was funny. I bought him an audio recorder to record his thoughts, jokes, anything he wants to hear again and again. And when the vidcam comes, we will make gigabytes of memories to be replayed as often as he likes.

If his brain throws the memories away, I will be there to pick them up.

And keep them safe.

Sunday, October 19, 2008

Sleep Apnea and Diabetes Link - Important!

I try to stay objective when I put articles in here. I realize and hope others know that you must look at your individual situation and always consult your doctor. But, in this case, this article is like looking at my sister and it is hard to maintain objectivity.

My sis, at 33, has been obese most of her life. She also has had sleep issues since she was a child. When she has the series of small strokes several months ago, it was a major shock to all of us. But when the diagnosis of diabetes came back, it mirrored our own mother.

What NEVER was discussed was the possibility that diabetes and sleep apnea were related. In our personal family history, I believe it is so. Both my mother and my sister snored terribly. I grew up with hearing the pauses in the breathing. I was so accustomed to them, that I didn't even think anything of it when my own son did so in his crib.

To fastforward so many years, it is difficult to possibly believe that maybe my mother needed a CPAP machine. She died very young at 62, after suffering with end-stage renal failure for nearly 10 years, the final complication in her nearly 30 year battle with diabetes. A battle she never seemed to be winning, only slowly and painfully losing.

My sister has been diagnosed with moderate-to-severe sleep apnea and my son has moderate sleep apnea. Both struggle with obesity and for now, my son's sugar levels are good, though his autonomic nervous system is shot.

My sister recently did a test of her sugar before she went to bed (a reading of 97) and when she awakened (a higher and not good reading of 130). With no food in between, her sugar level could only be a hormonal response to lack of oxygen.

Sorry this intro is long, but I am adamant about this.

Sleep apnea is a poorly controlled problem that is contributing to one of our society's biggest health crises: diabetes. It is destroying lives and ruining childhoods. Please do not take it lightly at all if you do not sleep well. Whether it is sleep apnea or some other sleep disorder, PLEASE seek help from a qualified sleep professional, preferably one from a sleep center in a hospital.


Sleep apnea and diabetes could be linked

By Barbara Quinn
The Monterey County Herald
Page 18 2008-10-19 01:04 AM
Associated Press

We hadn't done this before. Two of us - one from our hospital's sleep center and the other from our diabetes program - were both listening intently to a teleconference on sleep apnea and diabetes. What does one have to do with the other? Perhaps plenty, according to research in both fields.

Obstructive sleep apnea, or OSA, is characterized by disruptions in sleep caused by disordered breathing, explained sleep medicine physician Dr. Angela Hospenthal from the University of Texas Science Center. Symptoms include: "heroic snoring" (the kind that can be heard through closed doors), waking up choking or gasping or with a dry mouth or sore throat, and being excessively tired during the day.

How do you know you have it? Spend the night in a sleep lab hooked up to electrodes to measure how you breathe (or not). Lots of physiological things happen while sleep disordered people snore, said Hospenthal. Oxygen and blood flow are reduced, blood pressures rises and heart irregularities occur. All in all, it's not a very restful sleep. And during waking hours, people with sleep apnea have more trouble concentrating and remembering things. My sleep center companion nodded knowingly.

And what does that have to do with diabetes? Sleep apnea and diabetes are "linked" in several ways, we were told:

Central obesity - excess weight around the middle - is a risk for diabetes as well as sleep apnea. "Fat cells in the upper body (apple shapes) have different health effects than fat cells in the hips and thighs," Hospenthal noted.

Insulin resistance syndrome - a condition common in people with diabetes - is also commonly found in people with OSA. When we don't breathe deeply enough, it increases hormones in the body that raise blood sugar levels and impair the body's ability to process excess blood sugar. We both took a deep breath.

Neuropathy - nerve damage common in people with diabetes - is also prevalent in people with obstructive sleep apnea, although we don't exactly know why.

So, sleep apnea may lead to diabetes and diabetes may lead to sleep apnea. And interestingly, the treatment of one condition may improve the outcome of the other. For example, one effective treatment for sleep apnea - Continuous Positive Airway Pressure, or CPAP - may also help control blood sugar levels by helping get more oxygen to the body.
These strategies may help prevent or treat sleep problems and/or diabetes:

Lose excess weight. Even a modest weight loss of 10 percent to 15 percent can decrease the risk for sleep disorders as well as diabetes.

Avoid sleeping on your back. It blocks air flow which aggravates sleep disorders and may disrupt the body?s ability to process blood sugar.

Go to bed! Sleep deprivation is bad for your heart, your mind, your blood pressure and your blood sugars. Most adults require 6 hours to 7 hours of sleep a night.

Avoid alcohol, narcotics or other medications at bedtime that may disrupt your sleep.

My teleconference companion and I exchanged phone numbers and promised to keep in touch.

Original Site location:

Saturday, October 18, 2008

Looking Back...

April 2007. That was the month. The month that everything changed. And yet, it was the month that everything began to come together.

You know how you have a question in the back of your mind, nagging at you and never getting answered? That's what it was like for me.

My son had been born in 1996. Of course, like all mothers, I thought he was gorgeous. What was strange was that everywhere I went, so did other people. Women tripped across the street to gaze at him. At the babysitters, other mothers brushed past me AND their own kids, to say hello to him. Obviously, he had something. He had a superman curl, dimples and a cleft. OMG! I figured he was going to be a rake, and what was I going to do with him?

He was athletic too. He was the kind of child who didn't stop until he learned a thing. Learning to ride his two-wheeler didn't stop until nightfall. By then, he could speed up, stop on a dime, and turn in complete circles. Rollerblading met the same kind of determination. When he turned six, we began baseball. Too borring. The following year, soccer. Now, that was the sport! He could run all day, zigzagging up and down a field. I think he was in heaven! The following year, we added junior firefighters. He had wanted to be one since he was four, and now at eight, he meant to keep that promise.

So off we went to competitions with other fire houses and participated in parades, representing our neighborhood. I felt very proud. Because my first son had autism, I felt so blessed and redeemed to have my young son. Here was the child who was going to do things, and go places. He was outgoing and made more friends than I could keep up with. Everyone knew him, young and old. But more importantly, everyone liked him. He was generally considered a good kid.

And yet, there were questions. In hindsight, we put puzzle pieces together and say, hmmm...

He never could sleep well. After his first year of life, sleep became something of a battle. Either he needed to be near you or swaddled. He could not get himself to sleep. And you couldn't trick him, either, that smartypants! He could tell you were going to lay him down. If you thought he was in a deep sleep, those eyes would pop back open and stare at you. By two or three, there were no more naps during the day at all. And the energy was already off the chart.

At first, we thought, well he is just all boy. But, he snored. Like an old man with loose dentures. Everyone thought it was cure and told me, "how can you worry about a boy, so handsome, energetic and bright?" He was off the growth charts and never got sick.

But something else began to happen. He began to throw tantrums. He became easily frustrated. The problems in school began with being kicked out of pre-school. My darling little superboy had kicked a kid in the head and proceeded to destroy a room. I was appalled.

The tantrums continued. When he got to kindergarten, I stopped working full-time for good. My own disabilitiies were making it difficult anyway, and I needed to be there when the phone rang. And rang it did. By first grade, he was not concentrating anymore. He couldn't keep his attention on what was being taught. He was daydreaming all the time. By second grade, his grades began to slip. He couldn't keep a morning routine, even if you tatooed it on his arm. Even at home, I began to notice the bad memory. The joke was that if the dog depended on him for food, it would starve. All this with an energy drive that drove his brother and I crazy!

And yet, the sports began to suffer. It seemed like he couldn't sustain the energy needed for the field. He was constantly being pulled out of the game. He was not making plays like he had in the beginning. He was missing perfectly good shots and becoming clumsy with his moves. In fact, we noticed it at home. He was always falling, scraping and hurting himself. At firefighter meetings, he began to fall asleep. And memorizing the rules and procedures left him completely confused.

Then third grade began. Here, the social worker was brought in. He was becoming a "problem child." Disruptive and seemingly noncaring, he began to exhibit signs of depression. The social worker wanted to put him in a peer group she had started, but she began to notice something. My son would disappear. While sitting there, he would just stop moving and be gone. Then he might shake himself and he would be back. She suspected seizures.

Thus began the doctors. I still have her note to me requesting his first EEG. When the results were normal, everyone changed their minds and began to say he had ADHD. It covered some things, but not all. I fought it from day one.

Years ealier, my first son had been misdiagnosed with ADHD. I suspected more was going on with my second son, especially with the poor memory. It was not that he wasn't concentrating or paying attention. He literally could NOT remember. No one paid me any mind at all.

Try the meds they said. No difference, except he now had insomnia. And the depression worsened. He began to know something was wrong, but he couldn't tell me what it was. And I couldn't tell him what it was either. I began to feel we were losing him. He became fearful and apprehensive.

We tried therapy and finally natural remedies. There, we began to see a small improvement, especially in his schoolwork, though his memory was inconsistent. Fourth grade was the best year he ever had in school. On the herbals, he made honor roll three times that year. He made student of the month twice and I though, okay, I can deal with this. He just needs some supplements.

He was still clumsy though. That year we saw a sprained right ankle, a fractured inside and outside left ankle, and a bone chip from his left foot. With all the sitting around after those accidents, he began to gain weight and he left that school year in a boot cast.

But we were sure he was coming back. His grades were wonderful. The school staff thought he was just the greatest. He volunteered to teach kindergarteners about school and help them with their activities. Fifth grade started out on top of the world. Due to a move, he had to go to a different school, but I assured him he would still see a lot of his old friends, and since he was such a whip at making new ones, by the time he got to middle school, he would know twice as many people.

Well, as the saying goes, Didn't happen.

The problems came back with a vengeance. The calls began again. His temper; he is being rude to teachers. He is unreasonable, won't cooperate. Classwork is atrocious, and manners are even worse. As I cried inside, I headed up to the school. Here we go again. What is going on? I really can't take this. Where is my happy-go-lucky little man? What is robbing him of his innocence, making him someone I don't even know. What is happening to his memories? Why is his mood so miserable?

These are the questions that swirled in my mind when the month of April 2007 began. So, the day he asked to go out and play, it was a glimpse of a child that was disappearing. A boy whose happy childhood was about to enter the world of chronic illness.

Friday, October 17, 2008

Telling a Hard Story

After writing the last blog post, I started another one right away, and stopped.

It was too difficult to just jump right in and talk about how this last year has changed us. I realized that I was not that detached from the emotions this year stirred up. It was still difficult to talk about the changes, the loss and the bewildering confusion.

Then I realized that this blog was my way of coping. That every day that I attempted to write this stuff down was a day of recovery. Others might read it or might not, but once it was written down, for me, it would be a successful day. Another day after a bad one. I realized if I could put a whole lot of days like that behind me, we (my son and I) would turn around eventually and see how far we had come.

Grief is the human response to loss. Loss of any kind. The death of something can be just as painful as the death of someone. In having to let go of a former life, do we pause to grieve? Or do we do like our society tell us, "start a new business, get back into the scene, try a new hobby..." Even when someone suggests counseling, it is more about "moving on" than dealing with grief.

I found out that giving ourselves time to grieve what we have lost is so important. It validates our feelings and our situation. It lets us know that we are not just a blip on an evolutionary timeline. Something hurt and I am going to stop and acknowledge it! That doesn't make us weak or failures. We are not just complaining. To grieve is one of the most human things we can do...and should do.

Have you grieved the changes in your life? What helps you in your process? Can you look back on it or is it a daily thing? Has it taught you anything or brought out things in you that you never knew you had? I would love to hear about it.

Wednesday, October 15, 2008

Kids, Sleeping and Cognitive Functioning

Okay, I hadn't planned to put to articles about kids and sleep back to back, but this is an exception.

This article below outlines what I believe destroyed my son's life as we know it. I know that sounds dramatic, but we are trying to build a new life where the old one is going, going, gone. I don't get angry about it that much anymore, but I believe, if one doctor had asked me about snoring and sleep issues or paid attention when I DID say something, my son's life might be different right now. Notice I said, "might." No one knows, but with the information I have now, things could have been very, very different.

Please read and pass on to anyone you think needs to know this.

Cerebral oxygen saturation linked to cognitive function variation in children with sleep-disordered breathing.

By David Holmes

14 October 2008

Am J Respir Crit Care Med 2008; 178: 870-875

MedWire News:

Factors influencing regional cerebral oxygen saturation may interact to explain the sources of variability in cognitive function of children with sleep-disordered breathing, researchers report in the American Journal of Respiratory and Critical Care Medicine.

About two-thirds of children with snoring or obstructive sleep apnea (OSA) have some level of cognitive deficit. "However, the frequency of apnea events during sleep does not predict cognitive deficit and does not correlate with the degree of cognitive deficit,” Raouf Amin (Cincinnati Children's Hospital Medical Center, Ohio, USA) explained.

He continued: “Such a paradox raised the question of whether there are some variables that we do not traditionally measure in the sleep laboratory that might modify the effect of SDB on cognition."

To investigate further, Amin and team used infrared spectroscopy to measure the degree of cerebral oxygenation during sleep in 92 children aged 7 to 13 years, including 14 control children without sleep-disordered breathing, 32 with primary snoring, and 46 with OSA. The team also measured blood pressure and additional sleep diagnostic parameters.

They found that children with snoring had a significantly lower regional cerebral oxygen concentration than healthy children. However, paradoxically, they found that children with OSA − usually considered a more severe from of sleep-disordered breathing − had significantly higher regional cerebral oxygen concentrations than children with snoring only, and higher levels than controls.

"During normal sleep, when breathing appears to be stable, there seems to be higher oxygen in the brain among children with sleep apnea compared even to normal children," said Amin.

The finding may be attributable to the fact that sleep apnea raises blood pressure, according to Amin. "Children with sleep apnea have higher blood pressure compared with children who snore. This may explain why paradoxically we find higher oxygen levels in children with OSA."
David Gozal (University of Louisville, Kentucky, USA) wrote in an accompanying editorial that the findings showed that “neurocognitive deficits are not just in the brain matter but involve the cardiovascular system as well."

"By taking into account the role of blood pressure in regulating the amount of oxygen concentration in the brain, we might have a better understanding of the relationship between sleep-disordered breathing and cognitive deficit," concluded Amin.

Tuesday, October 14, 2008

Children and OSA

In between my posts about my family and our lives with chronic illnesses and disability, I will also post about sleep disorders and how they have affected us.

I love to find articles about sleep disorders and will post them here with links to the original article as well as other sources. Please feel free to comment or leave more information. I so want people to understand how much this can affect their lives or the lives of a loved-one.

Here is the first of many posts. Enjoy.


Though OSA has touched two members of my family, one older and one still a child, I think it is VERY important for parents to know what to look for in their children if/when they suspect sleep disorders.

Children can suffer from daytime sleepiness, but more likely, will have hyperactivity and restlessness. This could be misconstrued to be symptoms of ADHD. I do not have numbers, but my son was one of the many who was told he had and "tested positive" for ADHD, when he had sleep apnea. We even tried a trial of medication (only lasted two months) with no improvement. The side effects were many and more disruptive (insomnia, circadian clock rhythm dysfunction, loss of appetite and headaches) than the hyperactivity.

Below an article reprinted from The Herald News which goes into detail on this very subject. Again, a note of caution for parents. If your child suffers from hyperactivity, don't wait for the doctor to bring up whether your child sleeps well or not. If you have any questions regarding your child's sleep, bring them up to the doctor and don't shy away from this. Sleep apnea is nothing to play with when it comes to a child.

Sleep disorders linked to child hyperactivity

March 19, 2008
By Denise M. Baran-Unland
Special to the Herald news

Talk to a parent with a 2-year-old who is bouncing off the walls and she might apologetically tell you, "He's just overtired."

Flash forward to that same child five years later and that same parent might wonder if her child is hyperactive.

The fact is, he might still be overtired.

Between 1 and 3 percent of children ages 2 to 5 years old have obstructive sleep apnea, according to American Sleep Apnea Association. Left untreated, a child might experience failure to thrive, a number of cardiovascular disorders and symptoms commonly related to hyperactivity, including problems with learning, attention and behavior."

I have a number of patients with complaints of learning disorders," said Dr. Mohammed Saeed Homsi, pediatric sleep specialist at Provena Saint Joseph Medical Center in Joliet. "They think that their children have ADD until I dig deeper into their history."

If they tell me that their child snores, stops breathing or has mouth breathing, I do a sleep study. The parents are usually very surprised that sleep apnea is the cause of their child's hyperactivity and learning disability."

While being overweight may contribute to some cases of sleep apnea in children, as it very often does in adults, by far the most usual cause is enlarged tonsils and/or adenoids, Homsi said.

Yet, because sleep apnea is rarely diagnosed in children, the American Academy of Pediatrics now recommends that all children be regularly screened for snoring.

Sleep study

If the child has signs of obstructive sleep disorder, the pediatrician may order a sleep study or polysomnography. During the study at a hospital or sleep center, the child wears several recording devices --the same as an adult would -- none of which is painful; still parents are required to spend the night with the child, Homsi said.

The recording devices include an electroencephalogram (EEG), which measures brain waves; an electroculogram (EOG), which monitors the different stages of sleep; and electrocardiogram (EKG), which measure heart rate and rhythm. The child will also wear chest bands that sense breathing, monitors that record leg movements and monitors to sense oxygen and carbon dioxide levels in the blood.

If the sleep study reveals the child has obstructive sleep apnea, enlarged tonsils and adenoids -- if present -- will be removed. If obesity is the culprit, the child may need to lose weight.

In certain cases, the child may have to wear an electronic device when they sleep. This is called continuous positive airway pressure (CPAP).While all this may sound scary, the good news is that, with treatment, the symptoms and consequences of sleep apnea are reversible. But if symptoms persist, further exploration is needed.

Obstructive sleep disorder is not the only sleep disorder to plague children and teens, Homsi said.

For instance, the child may suffer from periodic limb movement. Similar to restless legs syndrome, the child periodically moves his legs while he sleeps. This causes him waken from sleep without being conscious of it, Homsi said. Unlike restless leg movement, which is diagnosed from the child's history, periodic limb movement is diagnosed by a sleep study."He will be very sleepy during the day and he will not be productive during school," Homsi said. "Sometimes iron deficiency causes it and sometimes we need to give medicine to control the leg movements. It depends on the result of the sleep study."

(Sorry, I do not have the exact citation link for this page. I will search and try to put these in as I go along.

Monday, October 13, 2008

A Year Ago

I cannot believe that it is over a year. One whole year since this saga seemed to begin. Though hindsight is 20/20, we were blind until April 2nd, 2007.

Up until that date, I was a mother of two, newly married to a wonderfully crazy kind of man, and slightly troubled on what to do about my sister.Though that day would change everything, right then and there, I wasn't thinking about too much. I had weathered becoming disabled, losing the ability to work. I had survived back surgery and once again could stand on my own two feet. I couldn't wear heels anymore, but, hey, we all can't walk the catwalk!

We had bought a house and moved in, trying to create a home. The two boys now had their own room where they had had to share for so long. We had enough room for an office and the master bedroom nearly blew my mind away! After living in what I affectionately called "two boxes on top of each other," I was happy to have a master bedroom at all!!

My sister had not come with us. In fact, she was going through shelters and transitional housing. But it looked like progress. After so much pain, disappointment and loss, I began to have a little hope that she would FINALLY be okay. They would help her get on her feet, and maybe, for the first time in 33 years, she would not live with my brother or me. There had only been one year she had been on her own, and that was over 10 years ago.

She never seemed to be able to get it together. All through high school (which she eventually dropped out of) and the brief stint of college, we all thought, maybe, just maybe, she would pull herself together. Maybe she would make something of herself. She had two jobs now, one she loved more than the other, but she was trying. That is all you can ask sometimes.

It looked like things were going to change for the better. I had finally accepted that I could no longer even sneak out to work. It had been hard to become disabled at 37. I had worked since I was 17, and hated it at first. But after the last round of sickness had caused Ramsey-Hunt Syndrome (a VERY BAD version of Bell's Palsy), I was finally humbled. I would stay my butt home and be a housewife. As my peers went on to better and better positions, I figured out how to cook organic and vegan. I just wanted to live...pain-, diabetes-, high blood pressure-, nerve flare- free.

I remember the day. I was in the kitchen. Of course, I was in the kitchen. I love cooking, recipes and food!! While other people dream of big screen TVs and surround sound, I dream of outlets every three feet, so I can plug in more gadgets! My dream kitchen would be 20' x16' with counters that went all the way around...

Anyway, back to the point. I sent my son out to play with his friends. He had sustained broken ankles, sprains and a chipped foot lately. Very clumsy, I thought. But the foot surgery seemed to have cleared everything up. But he had become chunky, and needed to move.

I told him to go get some air. The other boys were already out in the warming sun. Well, out he went to play football. I smiled because he was my athletic one. Soccer player, football, junior fire fighter. We had plans for him. Bigger than most boys 2-3 years older than him, everyone wanted him on their side.

I remember looking into a pot, then glancing out the window.

That was no way to play football. My son was lying on the ground, like he had just fallen asleep there. All the boys gathered around him, looking quizzically at him. Just as I got a little scared, he moved his leg and began to sit up. By the time I got to the door, he was heading toward our gate, holding his head.

All he said was, "I'm tired. I don't know what happened.' That was the first faint. He had never fainted before even under a blazing August sun, kicking soccer balls down a field. By the end of the week, it would be almost one a day.

The saga began.

Saturday, October 11, 2008

Starting To Tell a Lifetime

Well, it took some time before I really wanted to start writing this. I was not sure how to say all the things that needed to be said. I also wasn't sure if disclosure is such a great thing. I mean, do I really want to tell complete strangers details of our life? Do I want the scrutiny or even the ridicule (I have been on the internet 20 years, I have seen A LOT of flames).

But when I think of someone who may be searching for answers, like I was, and then they read about us and have that magical connection moment, I know it will be worth it to have opened up and told someone. Making a difference for even just one person will be worth it. After a lifetime of questions about a sister of mine, and part of the health questions about my son, we were introduced to the world of sleep apnea. Specifically Obstructive Sleep Apnea.

There are other worlds I have been introduced to (RSD, Back Issues, Shingles, Epilepsy, Autism, Asperger's, Degenerative Eye disorders, the list gets long), and I may touch upon them in this blog, but this is the one that blew the roof off of our smug little world.

If I say that both my son and my sister always had sleep issues, I would be understating it. The thing is not that we didn't know they had sleep issues, is that no one, NO ONE, thought anything of it. Not a single pediatrician ever said, Hmmm. "You say, she sleepwalks and snores, and destroys a bed every night? Well, she is growing wonderfully! See you in three-six months." Or it was, "it is not big deal that your 14 month old snores like an old man, he is off the growth charts. He will be just fine, you wait and see." If I sound cynical, it is because we have waited and we surely do see now. We see damage and wasted years, and hurt feelings, misunderstanding and lost opportunities. All because everyone thought there was no big deal.

For the lives of two people, it turned out to be...a very big deal.

For the older one (my sister), this diagnosis brings closure to a question of whether she was crazy, on drugs or just didn't give a darn. For the younger one (my son), it lead to another disorder that may alter the rest of his life.

It has already robbed him of 6th grade.

More to come...

Intros - More Than a 30 Second Infomercial

Okay, don't you just hate those? "Please describe yourself in 30 seconds or less." Ha! Not possible. Runs against the grain. I am not a soundbite and neither is my life. I hope to be able to slow down a little and write some. Not in 200 - 300 words, but in a full explanation of what I want to say.

So, for this intro, I am going to put in some info from a profile on another site and whatever else hits me. Here goes.

I am a member of a very unique family.

I am a wife to a wonderful husband (sometimes!) and mom to two fabulous boys. While that sounds ordinary, each of us battles different chronic illnesses or diseases. We all look perfectly normal on the outside, but we have struggles that make it difficult to function.

I am visually and hearing impaired, and have mobility impairments (herniated discs - 5 in all) as well. I now know that I have an allergy to dust mites, those pesky little critters you can never completely get rid of. Due to this allergy being untreated all of my life, I now suffer with multiple chemical sensitivities. My allergist is working to strengthen my immune system. I will let you know how it goes. I battle high blood pressure and diabetes through diet and medicine, both traditional and natural. I have recently been diagnosed with bruxism, TMJ and TN-trigeminal neuralgia.I have had numerous other illnesses throughout my 20s and 30s (RSD-in remission, Bells Palsy, optic neuritis, vertigo-recently returned). Now in my 40s, most days I am able to function as a homemaker, but not always. I still have good days and bad.

My husband has epilepsy (under control with meds) and anxiety disorder (being treated with meds and therapy). My oldest son, 15, has Asperger's syndrome, a form of high functioning autism, and my youngest son, 12, has just been diagnosed this year with moderate Obstructive Sleep Apnea (OSA), Delayed Sleep Phase Syndrome (DSPS), Chronic Fatigue Syndrome (CFS) and Dysautonomia/POTS, a disorder of the autonomic nervous system.

And I will add in another member of my family who you may hear about on a regular basis; my baby sister, age 33, who has recently suffered 5 small strokes. She has diabetes. When she is not working, she stays with us.

I am the advocate in the family, making sure that each receives the best care, accomodations and support they need. There are good days and bad, but I mostly try to find something uplifting to say. Not because I am a pie in the sky kind of person, but because we all have to survive in spite of our adversities.

There is so much more to say, but that is what the blog is for. I will write about our lives, food (I love recipes!), old movies, books and anything else that comes up. But mostly, I want everyone to be able to feel they can make it in this world; however your family is made up.