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.
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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.

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.