Tuesday, January 27, 2009

Report Details Abuse of Students with Disabilities

Report Documents That Our Special Needs Kids Are Not Safe At School

I am renaming autism the “Onion Disorder” because it really is like an onion. Everyday, every challenge and every lesson is like a layer of an onion. The layers are tearfully peeled back one at a time. Today, another painful layer as we learn that schools are not safe for our kids.

On January 13, the National Disability Rights Network unveiled an alarming national report on seclusion and restraint in U.S. schools. The report shows use of seclusion and restraint tactics that result in physical and emotional injuries as well as death, in schools affecting students from grades K-12. The report documents cases of children tied up, put in box’s, hit, pinned down, ostracized and subjected to various other cruel treatment. NDRN reports that problem lies in a patchwork of laws, regulations and guidelines nationwide. Their finding show 41% of schools have no laws, policies or guidelines concerning restraint or seclusion use in schools: almost 90% still allow prone restraints, and only 45% require or recommend that schools automatically notify parents or guardians of restraint/seclusion use.

I found the entire report on ndrn.org

Now I have the seed planted in my mind that our kids can be killed at school because they lack the policies, laws and procedures it takes to insure their safety. So, what now? I will go to Nicky’s school, I will show the assistant principal this report and I will politely and kindly ask him “May I see your written policy on seclusion and restraint?”. If he tells me he does not have one I will give him a copy of this report and ask him to look into creating a staff policy so that they can be a school that boasts of having addressed this issue. Then he can post this report along with a response from our school administrators. I am sure I will come up with more idea’s and I’ll share them and their results. Bottom line, if you were not already advocating for this type of safety in your schools, now may be the time.

Monday, January 19, 2009

The Nightmares; and my wake up call to let go...a little.

Maybe it's the budget crisis, wondering how he will get the help he needs for a lifetime, maybe it was the exhaustion of the holidays, maybe it was the result of his recent exploits going to neighbors homes, but the past few weeks I have inserted a reoccurring theme into my dreams; Nicky injured laying in a hospital bed. One time he was in a car accident as a passenger, one time he had been hit by a car, one time he had gotten sick and someone had taken him to the hospital, one time he had fallen. What I found interesting was that each time the accident happens I'm not there, I was not in the cars, I wasn't nearby, someone had to call me. In each dream I don't know how he is until I see him for the first time on a gurney in the ER.

It's a simple message "how will I keep him safe", "how do I protect him". Nicky is no different from any other child, as parents we just want them to be okay we want them to be safe. I know that when my daughter has cried out to me in pain, it goes right to my core like a lightening bolt and my heart pounds as cry back "What's wrong? Are you Okay?". The intense fear we feel when they are hurt or sad is primal. We all just want our kids to be safe and even though me know intellectually we cannot spare them from any pain, emotionally we try.

We can't protect anyone from life, because life has a plan of it's own and it unwinds as it see's fit not how we see fit. At the same time, Nicky is unlike Evyn who will learn to protect herself from some of what life has to offer, and Nicky may not. I can talk to Evyn about life's dangers and help her to protect herself, I can't do that with Nicky.

This dream was the awakening of another level of acceptance, and letting go. He's ten. He just had his first sleepover with a friend, he's growing up. It's time for me to work on letting go of my fear and giving him room to grow, which means room to fail. I have to accept that I will not always be there to keep Nicky safe, its impossible. I also have to remind myself that what is best for him is that he be able to achieve his greatest level of independence. That won't happen if I hold on to tight. So I must loosen my mommy grip and let him learn.

So it was mommy wake up time, time to let him grow and know that he will be okay and to trust that if he isn't I'll be there, just like in my dreams.

Thursday, January 8, 2009

Study Shows Increase Is Real, Not Just Due to Changes in Diagnosis Criteria...It's about time.

When people first began saying that the increase in children being diagnosed with autism, was just the result of better diagnostic tools, I laughed. Not a happy laugh but a "you have to be kidding" laugh. I just could not believe that anyone would believe that these kids could just kinda slip through the cracks, with different diagnosis's. I agree that better diagnostic tools are helping to get early detection, and catch some of the more higher functioning children, but I do not and I have never believed that we had not seen an increase in the number of impacted children. As a mom, who socialized with a lot of mom's I was certain that there were no other mom's when my daughter was in preschool and kinder talking about special education, and challenging behaviors. No parents talking about siezure disorder's or gastrointestional problems. Even though my daugher was healthy, I would have heard something, seen something and I did'nt. So, for that reason this was a good study to read, and for those who feel like I did, a good story to share.

RESEARCH

cc

By Daniel J. DeNoon, WebMD Health News, Reviewed by Louise Chang, MD
tiny.pl/vhtg

Environmental factors may be partly behind California's eightfold rise in new cases, a new study implies.
Many researchers have believed that the continuous increase in autism cases over the last decade -- particularly the huge increase seen in California -- isn't real, but can be explained by "artifacts."
Among these artifacts are the recent broadening of the diagnostic criteria for autism and greatly increased diagnosis of autism at younger ages. Both these factors could make it seem like there are more autism cases than there were before.
These artifacts do explain part of the rise in autism cases, shows a rigorous study by Irva Hertz-Picciotto, PhD, MPH, chief of the division of environmental and occupational health at the University of California, Davis.
But even taken together, they don't explain even half of the huge increase in cases.
"When you put it all together, this doesn't come close to explaining the increases in the last 10 years," Hertz-Picciotto tells WebMD. "The more you whittle away at this increase, the more you have to say that what is left over is real. ... Given that autism cases keep going up, and can't be fully explained by artifacts, environmental factors deserve serious consideration."
Hertz-Picciotto notes that her study does not account for one potentially huge artifact: The fact that today's parents are vastly more aware of autism than they were a decade ago.
Autism can't be diagnosed unless you're looking for it -- so parent awareness has a huge potential effect on the rise of autism, says Gary W. Goldstein, president and CEO of the Kennedy Krieger Institute and professor of environmental health sciences at Johns Hopkins University.
"There is an enormous increase in awareness. Everybody knows about autism now, and they didn't 16 years ago," Goldstein tells WebMD.
"The awareness thing is very hard to quantify," Hertz-Picciotto says. "But at some point, as more and more parents became aware of autism, the increase should have leveled off. Instead we see a continued increase in autism."
Hertz-Picciotto notes that the lion's share of autism funding is going to genetic studies. She argues that it's high time more effort was put into looking for environmental factors that cause autism in genetically susceptible individuals.
"Time is passing and science has a lot to do to find the real causes of autism," she says. "A lot has changed in the environment over the last 10 to 15 years. And I paint with a broad brush when I say environment: These changes include things like medications people take and assisted reproduction technology as well as what is in soaps and pet shampoos and toothpaste and so forth."
Autism expert Michael L. Cuccaro, PhD, associate professor of human genetics at the University of Miami, praises Hertz-Picciotto's systematic study of the rise in autism cases. He agrees with her that it's time to consider environmental factors as part of the cause of autism.
"I don't think it is premature to look for environmental risks," Cuccaro tells WebMD. "There are environmental risk factors that give rise to a wide range of developmental conditions, and there's no reason to think autism isn't one of them. And papers like this are critical to get to this point. Because you have to convince people it is not explained by all these other factors."
Environmental studies are already under way -- and research organizations are eager to fund them, Goldstein says. But the difficulty goes far beyond funding.
"We only have 20,000 to 25,000 genes. But we have a hundred thousand environmental exposures. How do you control for that?" he says. "And your genes stay the same, while environmental exposures may have come and gone. It is difficult to do these studies -- the problem is not that it isn't thought to be important."
The Hertz-Picciotto study appears in the January issue of Epidemiology. The study is co-authored by Lora Delwiche.

RESEARCH

Study Shows Increase Is Real, Not Just Due to Changes in Diagnosis Criteria

By Daniel J. DeNoon, WebMD Health News, Reviewed by Louise Chang, MD
tiny.pl/vhtg

Environmental factors may be partly behind California's eightfold rise in new cases, a new study implies.
Many researchers have believed that the continuous increase in autism cases over the last decade -- particularly the huge increase seen in California -- isn't real, but can be explained by "artifacts."
Among these artifacts are the recent broadening of the diagnostic criteria for autism and greatly increased diagnosis of autism at younger ages. Both these factors could make it seem like there are more autism cases than there were before.
These artifacts do explain part of the rise in autism cases, shows a rigorous study by Irva Hertz-Picciotto, PhD, MPH, chief of the division of environmental and occupational health at the University of California, Davis.
But even taken together, they don't explain even half of the huge increase in cases.
"When you put it all together, this doesn't come close to explaining the increases in the last 10 years," Hertz-Picciotto tells WebMD. "The more you whittle away at this increase, the more you have to say that what is left over is real. ... Given that autism cases keep going up, and can't be fully explained by artifacts, environmental factors deserve serious consideration."
Hertz-Picciotto notes that her study does not account for one potentially huge artifact: The fact that today's parents are vastly more aware of autism than they were a decade ago.
Autism can't be diagnosed unless you're looking for it -- so parent awareness has a huge potential effect on the rise of autism, says Gary W. Goldstein, president and CEO of the Kennedy Krieger Institute and professor of environmental health sciences at Johns Hopkins University.
"There is an enormous increase in awareness. Everybody knows about autism now, and they didn't 16 years ago," Goldstein tells WebMD.
"The awareness thing is very hard to quantify," Hertz-Picciotto says. "But at some point, as more and more parents became aware of autism, the increase should have leveled off. Instead we see a continued increase in autism."
Hertz-Picciotto notes that the lion's share of autism funding is going to genetic studies. She argues that it's high time more effort was put into looking for environmental factors that cause autism in genetically susceptible individuals.
"Time is passing and science has a lot to do to find the real causes of autism," she says. "A lot has changed in the environment over the last 10 to 15 years. And I paint with a broad brush when I say environment: These changes include things like medications people take and assisted reproduction technology as well as what is in soaps and pet shampoos and toothpaste and so forth."
Autism expert Michael L. Cuccaro, PhD, associate professor of human genetics at the University of Miami, praises Hertz-Picciotto's systematic study of the rise in autism cases. He agrees with her that it's time to consider environmental factors as part of the cause of autism.
"I don't think it is premature to look for environmental risks," Cuccaro tells WebMD. "There are environmental risk factors that give rise to a wide range of developmental conditions, and there's no reason to think autism isn't one of them. And papers like this are critical to get to this point. Because you have to convince people it is not explained by all these other factors."
Environmental studies are already under way -- and research organizations are eager to fund them, Goldstein says. But the difficulty goes far beyond funding.
"We only have 20,000 to 25,000 genes. But we have a hundred thousand environmental exposures. How do you control for that?" he says. "And your genes stay the same, while environmental exposures may have come and gone. It is difficult to do these studies -- the problem is not that it isn't thought to be important."
The Hertz-Picciotto study appears in the January issue of Epidemiology. The study is co-authored by Lora Delwiche.v

Saturday, January 3, 2009

Grief the Gift that Keeps on Giving

Grief the Gift that Keeps on Giving
I have been going to holiday programs for the past 13 years for Evyn and Nicholas. Last week I went to the annual Christmas program at Nicky’s elementary school. I was just one of many proud parents crushed into a room to see the program complete with paper reindeer antlers and kiddy craft decorations and presents for teachers. I always cry a little. At Evyn’s programs I cried the kind of tears you cry at a wedding. At Nicky’s I cry those and tears that sneak up from my stomach, raw emotion old pain.
This is Nicky’s last year at elementary school and this will his first time on stage without an aid. I’m feeling deeply proud that my guy is part of the program. But that’s not the only feeling I’m experiencing. As I watch the other kids file in and perform there is a big excited smile on my face and I’m sad too. It’s in these moments, standing next to all the other kids his age that I cannot deny or minimize his disability. In these moments, standing right next to so many of his peers his difference’s seem so BIG. My mind races. I begin thinking about what he can’t do and I even imagine which child, which personality he might have if he didn’t have autism. Would he be a quiet kid, outgoing, cool, shy or funny. Would he sing loud, or just blend in with the group, would he be a popular kid, would he like sports?. Would he be excited to be in the program, excited to sing all the songs and even maybe nervous before the show began? Would he be like the kid who seems so popular? Then my stomach rolls into a knot and tears explode from my eyes and I’m sad for him, sad for me, I feel ashamed of myself for what I’m thinking. Then I stop, recognizing what is happening (because I have been here so many times) and I give myself a bonk on the head and say “Snap out of It!!”. There is nothing in sadness, but sadness. Focus on all that he does have, all that he can do and stop making up stories. He has a wonderful personality, he is clever and funny and loving. He is strong and he has his legs that got him on the stage and how do I know for sure that he isn’t feeling excited about being in the show. I let my grief go.
It’s been 8 years of shows with Nicky since preschool, and hundreds of hours of playgrounds and party’s and the grief is still not gone. The grief from thinking about how things might have been, things that I just assumed would be a part of my sons life, the loss of what I never really knew the constant death of expectations. It visits me as every age appropriate “Milestone” unfolds in and around Nicky’s life. The biggest difference now, is that I know my feelings are normal and they won’t ever entirely go away, and I don’t expect them to. I’ve learned not to pretend they don’t exist or to feel like a failure for having them. Now I can I feel them, and I can let them go.

Friday, January 2, 2009

Another Year Another lesson

With the help of my family and friends I finally see things differently. I no longer measure my days by long lists of goals that don't get crossed off, setting myself up for disappointment. Today I measure my days by asking myself "Did I do the best I could today?", "Did I help anybody?", "Did I make a difference?". Life will never look like it did before autism and I accept that where there is a will there is a way...I just don't have to know the way in advance.

Nicky was diagnosed 8 years ago. Since that time my life has changed and continues to change in ways I could have never imagined, articulated, anticipated or even understood. I still don't know all the ways his diagnosis has changed my life, or what changes were the result of his diagnosis or what was just "life".

Before Nicky was born I was a mom, wife and businesswomen. I was great at making a plan and then working my plan. This was how I got things done, this was the mold for my life. I said what I was going to do, and then I arranged my life to make it happen...no big deal, just mental focus and determination.

Then came Nicky. He was sick a lot as a baby so I cut my work schedule back to take care of him and Evyn. He was 14 months old before I found a part time day care for him, and he was 20 months when he was stuck with pneumonia, 22 months when he lost his speech, and 24 months when we received a diagnosis for autism. During this time, there were NO plans, just reactions to situations. I couldn't make any plans because I didn't know from one day to another what would happen with Nicky. Change on a daily basis became the only plan, defense vs offense. I was living in survival mode.

This was a massive adjustment for me because it was foreign. I had given up all that "pro active" control of my life as I knew it in the work world. I didn't think of my life as controlled but, it was, in the sense that "I" could make a plan work a plan and it was all up to me. I decided when to eat, when to shower, where to work, when to sleep, when to wake up, what I wanted to do that day, yes I was in control.

Although I couldn't see it then, there safety for me in all those plans and goals. Now, living in crisis there was no safety and I was literally going one day, one hour at a time.

I no longer worked full time and soon I began living completely in the "mom" part of me. The female part of me who only knew that taking care of her kids was what she had to do. The more male work side that I had developed over the years to survive in business was on the shelf. Then some 7 years later I realized that I needed that side to come out to take care of my entire family, to run a business, to make plans that would insure our financial future. It was time to set goals and get things done because, as a single mom, if I didn't who would. Who would care for my kids, who would care for Nicky, who would make sure he would not end up a ward of the state dependent on social services. No one, so I had to focus on business.

I tried to shift my focus back to work and I engage how I always had. Time and time again I would gather up folks set meetings and make plans, which were canceled and replaced by what the kids needed. Get in, make a plan, and put that plan to work. I repeatedly told myself, you know what to do, just get it done. And each time I didn't get it done I just got more frustrated with myself. I really didn't get "why" I couldn't do it all when I knew I had to.

I finally accepted that it didn't work because I was not the person I was before Nicky. I had two children to raise and I was now a single parent. I had to find a way to stop expecting myself to be able to do it all, to stop thinking that made me inadequate or a failure. I had to accept that no one can do it all.

With the help of my family and friends I finally see things differently, I have a different perspective. I no longer measure my days by long lists of goals that don't get crossed off and I measure my day by asking myself "Did I do the best I could today?", "Did I help anybody?", "Did I make a difference?". I finally accept that life will never look like it did before Nicky and It's better than the list that never seems to be completed. I accept that different is not necessarily bad. I accept that where there is a will there is a way...I just don't have to know in advance.

Happy New Year.

Thursday, January 1, 2009

Hi Bacon!

Let Yourself Laugh!

One of Nicky’s greatest challenges is language processing. It takes him a long time to process and comprehend words he hears and he is slow to learn new words. When taking to him in some ways it’s like being around someone who is really hard of hearing. They pick up the words they understand and they guess the rest. For the most part this is challenging and frustrating, but this week it was funny.

Nicky was at school when his therapist, saw him looking at a group of his female classmates and acting as if he wanted to talk to them. His therapist is a big guy and he talks to Nicky in very cool dude speak. His therapist watched him and said, “Dude, seems to me you want to go and say Hi to the babes”. Nicky looked at him thoughtfully for a few minutes, and then walked over to the girls and said “Hi bacon”.

Everybody laughed. They could have been offended, they could have laughed at him, but they didn’t. Lovingly they all laughed together. They all knew that Nicky was trying his best to say something nice and they loved it. When I heard this I couldn’t stop laughing. He is too cute!