Fix Your Child!

I have got to stop doing this.

Starting out as a comment to a friend's journal entries on Trusera, I ended up writing too many characters to fit in the message box. Instead of deleting 258 characters, I decided to turn it into a blog post. This is the second time this has happened. Mostly, I just end up leaving really long responses. But, today, this ended up having a life of it own.

My friend was reading the latest assessment for her son. She was frightened and angry at the same time. She wanted answers. She wanted quick answers. She knew she wouldn't get them, but in her heart, she wanted them just the same. If someone could have walked up and handed her a prescription that would take all the deficits away, she would have taken it and parted with every earthly possession she owned to get it.

She didn't want to hear "nothing can be done." She didn't want to hear about how autism can be a blessing. And, I responded with my own, similar feeling.

Read on.
o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-

I would NEVER tell anyone that their child should or shouldn't be "fixed." That is not the right word for what you want to do. You want to help your child succeed. They need intervention. It exists and you want them to have it. There are so many ways to help our children. Therapies, tapes, DVDs, our own behavior and drive, etc.- all this can make a difference.

I realize that some people have severely delayed children, who remain non-verbal, wearing diapers into their middle school years. I realize there is a side to autism that is aggressive, violent and even dangerous. They are in a different place than you or I. Where I am, I can see a tunnel. It is a long one, but it has a faint light at the end of it.

When I was told my son needed a special school and would never graduate high school, I dug my heels in and fought. Every night, over and over again. Fought the delays, the stimming, the inattention, all of it. Through what I now know is called modeling, I shaped his responses. Eventually, we could understand each other. Not always, but enough. Once we could understand each other, then the real work began. Over and over, like a broken record, I explained the world to him. How he should stand; how close he could get to people. If he walked out of a room while someone was talking, how it would appear to the other person. How to hug. How to hug tightly. How to kiss his mother good-night. We even formed a ritual around that. We patted them into our cheeks to make sure they couldn't be wiped off. At 16, I still occasionally catch him doing it.

This Saturday, my son will take his first SAT. I don't expect high grades. I expect him to finish. As I type this, his practice test is printing. We will go over it, line by line. He will take the test again next year, his final year in high school. He is on time and on no meds. He has driving assessments, a 2 week career assessment with assistance. He will go away for 4 months next year to live away from family. He is not on the disability they asked me to file for him 11 years ago.

My 2nd son has speech, language and memory delays. We fight the lack of language skills through picture and video vocabulary, mind-mapping software, practice, practice and more practice. Even though his prognosis is more grim, I forge ahead and fight his brain's deficits. I expect more and each day, we, he and I, somehow get it.

This is my rant today and my advice. Don't ever stop fighting to uncover the abilities your child possesses. Whatever level your child functions, don't just accept and be content. You may end up like me; a tired, but triumphant mother of the best two people I know.

Snazzy Pink Socks!-And They Feel Great, Too!

I am going to have to start a section in my blog called "People I Met Through Twitter."

Maybe, it will be on the new blog site I am currently slaving away on day and night. If you haven't read Momentous Decision, click here to read it. It talks about my idea to start a new blog. The end result is not exactly like I posted, but it outlines the spark that ignited my dream of new bloggie directions.

But this post is about a wonderful company I befriended on Twitter called Smart Knit Kids. Actually, the company is called Therawear and one of their products is called Smart Knit Kids. Their Twitter name is @smartknitkids.

Twitter is a great invention and businesses are getting on everyday. I think that is wonderful, but if you are not willing to do what @smartknitkids did, come to the front of the classroom, listen and learn.

First, even though there was a logo (everyone wants to tell you to put a face; not necessary), the person tweeting came across as real. They laughed (LOL!) email-style, they conversed and then presented a product I might be interested in. They explained the benefits to me; how it was a product specifically made for my children's sensory needs.

Next, they said, "We would be happy to send you a sample."

Hello? Something FREE? Yes, we love that. So, we exchanged information through a DM.

I was expecting a pair of socks. In less than a week, I got five. Two for each child and one pink pair for me. (Now, pink is not my favorite color, but I was intrigued.) The package came by UPS and included an handwritten note.

Okay, that blew me away.

But, what was better, was that their product lived up to what they said.

Instant integrity.

My oldest, who has Aperger's immediately put them on. Lately, he has a thing for socks and I am always looking for good ones. My youngest son, who has all manner of podiatric problems and is always complaining of ill-fitting socks and hurting feet, tried on the Large, but really needed the Xtra Large. That fit perfectly.

Well, you know I have to have customer feedback. The exchange went something like this:

"I think the large is too small." - young son
"Well, more for me, then." - oldest son
"Hey!!" - young son
"Here is the xtra large for you. How is that?" - ever-vigilant Mom
"Oh, that is much better. Perfect." - young son
"So...how do they feel?" - worried Mom, who is accustomed to rejection.
"They are fine." - young son
"Yea, just fine." - oldest son

Now, that may not sound like music to anyone's ears, but in my house, that is a rave review! Neither one of them gave them back or took them off. In fact, three hours later as I write this, they still have them on.

Success!!!


SmartKnitKids Socks 001
Originally uploaded by judielise

Next, I visited their site. I was a little shocked. It was your corporate-looking website with an online store that I have probably Google-searched passed many times. But, I knew someone in here. Her name is Rose. She sent me a note with her name on it, so I was comfortable. I found the socks, priced them and prepared to place our first order. And, their socks are value-priced compared to other specialty sockwear!

Now, some may say, well, Judi, of course, you write a good review because they sent you FIVE pairs of FREE socks.

Okay, you are missing it. They didn't have to do that, I didn't have to even talk to them online and this whole thing could not have happened. I could be blogging about something else, but I am not.

I am blogging about a company that wasn't afraid to get to know me, the customer, before they sold me a product. Then, their product lived up to their word. In other words, there was a connection. One of honesty and friendship, and a sale.

In my new blog, I want to write and discuss all about these kinds of connections. Big and small. Online and off.

And, Therawear/Smart Knit Kids will be in there.

Thanks for not spamming me and thanks for making a quality product. And, this is the only time you will see a posted picture of me in pink socks! Only you could get me to do it!


SmartKnitKids Socks 002
Originally uploaded by judielise

And, of course, Mom has to clean up.


Empty Box
Originally uploaded by judielise

All pictures are publicly available on Flickr

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.

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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.

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.

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.

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.

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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.