Category Archives: Advocacy

Developmentally Disabled – label or hype? I say …

Chart showing the increase in autism diagnosis...

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Survey Says

When researchers report new growth in the numbers of kids with special needs, it creates a stir. I get that, I do.

Those who don’t have a kid with that label don’t generally understand the months and years behind trying to find a diagnosis, trying to get your child to catch up their peers, or even just trying to complete therapy. Instead, they see the rising numbers and say parents are looking for excuses, professionals don’t want to do their jobs, or the world is just too label crazy.

I say … they’re missing the point.

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Filed under Advocacy, Autism, Education, Parenting, Research, Special Needs, venting

IEP: And the Winner is … Andy!

Some Good News (is always welcome)

Today was the the ACR (annual case review) for Andy’s IEP (Individualized Education Plan).  In the past such meetings have been stressful, as you can imagine it would be.

Andy (and Bobby)

From Disney vacation, Andy looks serious at the camera (while Bobby looks on!)

We had a little glimpse of the trepidation that comes with preparing to send a child to the middle school setting–and don’t watch as I tear up over that milestone alone.

This meeting, though, was more of a celebration of sorts.

Andy, who last year was just starting to read, with much help and frustration, is today reading at a fourth-grade reading level. In less than a year he jumped more than two grade levels (almost three!), to become the proud Diary of a Wimpy Kid aficionado he is today. Two years ago, this red-haired charmer of a serious, quirky, kid was barely reading at all.

He jumped forward in math and other areas as well.

Despite his success, we treated the discussion of his placement next year with kid gloves, because this little guy who love Greg Hefley and all things Wimpy Kid related is the same kid who obsessively worries that he is doing, has done, will do something, anything wrong. His anxiety places him in a fragile emotional state, and prompted his teacher to address the committee regarding his anxiety alone.

He’s come so far, I’m willing to overlook the fact that my mildly-autistic little guy shows more signs of this disorder as he gets older, not less. He’s come so far, I’m going to try not to think about him and his ‘quirky’ qualities being the fertile bullying ground I know them to be in the middle school.

Today, instead, is about celebrating how far my quirky guy has come.

In case we missed the memo, we received a note from the school just a couple days ago, asking us to attend the year-end award ceremony.  It seems this serious, empathetic red-head will be receiving the Citizenship Award.

As he graduates from elementary school and the protection it afforded him, I’ve decided to celebrate instead of worrying about what could be around the corner.

Oh, we’ll talk with the specialist about considering anxiety medication. And he’s already saved the library’s summer reading club flyer. He’s going to have a busy summer. And he’s going to keep pushing himself to new heights.

Not because we do or don’t focus on the positive, but because he is focused on the future.  He wants to keep reading. Writing in his journal and drawing the comics he loves to characterize are very important too. He thinks college is a good goal to have, he’s said.

Of course I agree wholeheartedly.

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Congress May Consider Special Needs Bullying ‘Epidemic’

Kat's Curiosity: A Look at Bullying

In-depth look at Bullying

Really?

We need an act of Congress in order to curtail kids being mean to one another now?

Don’t misunderstand me, I’m not opposed to the measure, which recognizes a significant concern across the nation. I’m opposed to the idea that we need an act of Congress to force the general public, and many in the special needs community, to acknowledge the problem.

If you want to do some heavy reading, you can look at a first-of-its kind study which was reported in Pediatrics, the official journal of the American Academy of Pediatrics. It’s from 2006, but I found it interesting, both as a parent of special needs children and as a research geek. This particular study was used in the recent report Walk a Mile in Their Shoes, along with a few of the 10 (yes, 10) reports published since then. This newest report doesn’t include all of the statistics I found interesting in the original report, focusing instead on the high number of children with special needs who are bullied.

The simple answer?

In the study from 2006, Kids with significant behavioral, emotional, and developmental problems were almost twice as likely to be bullied – 32.4% of kids without these special health care needs (their parents) responded that they were being bullied, compared to 54.6% of kids with special health care needs.

The statistic not included in the newly published report, which I also found troubling, though:  21.1% of kids without special health care needs’ parents said that they bullied others, compared to 51.1% of kids with special health care needs. Wow – more than double the number.

Why both factors matter

If we, as parents of special needs kids, ignore the fact that our kids are statistically more than twice as likely to bully other kids, whether those kids are also special needs kids or have no problems at all, then we ignore one symptom of the larger problem. We forget, bullying isn’t a sign of aggression so much as it is a sign of inner turmoil, of pain, sometimes even abuse. Until we address the underlying disease, of which bullying is a symptom, we can never help kids on both sides of the equation, the ones who are victims as well as the ones who victimize others.

Here’s one last statistic, which underscores that fact: 8.7% of kids without special health care needs were said to experience both being bullied and bullying others, but more than 3x that number, 28.2%, of children with special health care needs, said they experienced both.

BOTH.

Our kids are crying out for help. These special kids, who are as unique as they are similar in so many respects, already stand out from their peers who don’t have disabilities. Bullying is a real problem, but it is also a symptom of a larger problem.  Behavior difficulties and socialization difficulties are secondary to a diagnosis of many special needs.

What the New Information Stresses

The new report, Walk a Mile in Their Shoes, offers something unique and needed for families with special needs kids, as well as educators who care about them. The report is a fully formed resource, available in PDF form, with the newest information combined with the best information, presented in an easy-to-understand format which makes it a must-use resource for parents of children with special needs.

It also emphasizes the fact that the statistical differences are holding up, and becoming more pronounced, among kids with special needs being bullied, as compared to their typically-developing peers. In this vulnerable population, many factors contribute to kids  being harassed and physically or verbally abused.

These same difficulties aren’t the same as those in the general population, because these are kids who look different, act different, and think differently than their peers. These are kids who are, often-times, separated in self-contained classroom settings much of the day. In this situation, the kid who doesn’t really grow up around their peers is the kid who is more easily made fun of for being different, rather than being supported.

I am not saying self-contained classrooms don’t have their place – my kids have flourished in them. But they have been placed in these classrooms while at the same time having the opportunity to interact with their peers during many classes or activities during the day.  Inclusion isn’t an all-or-nothing prospect.

I digress, though, because inclusion is a topic in and of itself, and this is a post about bullying.

Back to the Point

We know we have a vulnerable population of kids. There have even been stories of extreme abuse and death (yes, even suicide) as a result of bullying kids with special needs. This is sad and sometimes overwhelming for parents to take in.

I think of Logan, and his inability to talk, and wonder how often a peer looks past his easy smile and says something about his inability to talk with them.

I think of Bobby, with his more noticeable rocking and flapping, and worry about the kid who doesn’t give him a high-five, who instead calls him names (it’s already happened before).

I think of Andy, my quirky and curious guy who just has trouble understanding social cues. I remember the neighbor calling to tell me to keep him from knocking on their door, asking to play with their little girl. What I thought was a good social exercise became a sit-down discussion about how not all our friends are as nice as others.

For our kids, we need to make the effort. These are kids who can’t always speak up for themselves, and it is up to us to do so.

Taking the problem of bullying away from what causes it denies the fact that it is a symptom of a larger issue, one that can’t be combated by a sleep poster and a commercial spot. To get at the root of the problem, we have to address the social and emotional differences that are inherent in our children.

How often are these difficulties adequately addressed during IEP meetings (conferences where the parents and the experts come together to decide on the best way to teach a child with special needs)? How often are they ignored until a problem exhibits troubling behavior, instead of preemptively, by educating and social modeling?

We are our kids’ best advocates, and sometimes we are our kids’ only advocates. If we recognize the potential danger inherent in ignoring the disease until the symptoms are hard to treat, we do a disservice to our kids and all the other children in their classes.

Is congressional intervention necessary for parents, advocates, and educators to actually stand up for more than their child’s most basic academic goals?

As a parent, as an advocate, I would love to say no. But the reality is, adults and children alike have to understand the significance of picking on the weak. And if we aren’t stepping up to the challenge, then maybe it’s time for someone else to help us do so.

A California congresswoman says she plans to introduce legislation designed to address the disproportionately high rate of bullying that students with disabilities face.

Citing statistics showing that children with special needs are bullied at twice the rate of other kids, Rep. Jackie Speier, D-Calif., said on the floor of the House of Representatives this week that she plans to introduce legislation to tackle what she dubbed an “epidemic.” via Congress May Consider Special Needs Bullying ‘Epidemic’ – Disability Scoop.

  • Learn 2 be Buddies – website featuring additional resources to teach kids social skills, including the most recent book on Bullying. Look for my upcoming discussion with Amanda Clements (Gray), B.Ed (SE/EC), and author of “Dave is Brave,” and “Why Don’t You Share?”  Australia implemented legislation a few years back about bullying, and Amanda will share more with us about that, allowing for a meaningful chat about what similar legislation in the US could entail.

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Research: Rare Disease Breakthrough and the Hope it Means

It’s not often I can talk about the rare disease my family shares and relate it to some real news in the research front.

Just two kids among many.

My guys hit Disney's Magic Kingdom ready to see it all. Here, Andy and Bobby pose in front of the Castle at Magic Kingdom.

I have included pictures of my guys before, and I will do so again, because you should know that when it comes to rare disorders, I kind of know a bit about it all. It was about 12 years ago we learned that our then baby boy had a rare disease called Rieger Syndrome.

Over the years I connected with other families, all over the world, to learn more about this syndrome and the other related diagnoses my guys all eventually shared.

We struggled in the same way millions of families have to help Bobby make the most of his vision loss (today his functional vision is considered exceptional) and I connected with yet more families.   We faced the fears of new parents worldwide as first one, then another, and then another were all diagnosed with not only Rieger Syndrome, but also autism and epilepsy.

Just when I realized my youngest child would join the genetic lottery that is our family, we added more to his small plate, as a preemie with a brain bleed, Cerebral Palsy, Apraxia, and seizures more severe than those we’d seen previously.  When I looked to the experts, I wasn’t looking at the specialists we trusted sometimes daily with our brood. No, I looked to the experts who became experts by default, not by choice.  I looked to other parents.

We’ve earned our stripes, this motley Moody crew of ours.  So when I see research that unequivocally points to progress in the race to understand the genetic code, I feel like something important has been accomplished.

For those who don’t understand the importance of the link that follows, consider this analogy:

Once upon a time, only the strong survived. Those who were hurt, those who were formed differently, were sent away to die, or killed at birth or upon injury. And then we learned how to treat the sick, mend the broken. And across the centuries, many were saved.

Once upon a time, we thought that many diseases could not be treated. We sent those diagnosed with them away to suffer and die, in silence. And then we learned about vaccinations. And many were saved.

Once upon a time, we thought that every child born with this condition or that one would die within months and we warned the parents, prepared them to say goodbye too soon. And they developed new treatments. With a single shot, many were saved.

Today, more than 30 million Americans (1), young and old, are living with a rare disorder diagnosis. The vast majority are non-fatal. Some day in the future, that number might rise, but with research, and information, and hope, many will be saved.

My family, and the millions across the globe, can be excited about research that finds connections and holds new promise, because it means a better future for those we love and millions more to come.  We aren’t looking to change those we love, to take away this vital part of their identity, for uniqueness is valuable.  We, instead, are hoping to shift some of the burden of pain and difference so that ours and so many other children can be unique because of who they are, not the disease they were born with.

Source

1.) NORD. (2011). What is NORD? Welcome to NORD — National Organization for Rare Disorders. Retrieved May 17, 2011, from http://www.rarediseases.org.

The link will take you to a press release, which does a credible job of explaining the significance of these genetic findings. I would love to know what you think, about my words or theirs. How have you been impacted by a rare disorder?


Researchers looking at a rare disease make breakthrough that could benefit everyone.

MONTREAL, March 1, 2011 – By working with Canadians of French ancestry who suffer a rare genetic disease, researchers have discovered how three genes contribute to abnormal growth, making a breakthrough that will improve our understanding of many disorders such as foetal and childhood growth retardation, abnormal development of body parts and cancer. “As a result of the Human Genome Project, we know the basic identity of essentially all the genes in the human body, but we don’t automatically know what they do in detail,” explained lead researcher Dr. Mark Samuels of the University of Montreal‘s Department of Medicine and the Sainte-Justine University Hospital Research Centre. “It’s like opening your car and seeing the parts, but not knowing what each one does. When a part breaks however, you learn how it fits with the rest of the machine. Working with people who have specific health or development problems linked to specific genes enables us to see how those genes contribute to our bodies’ development and functioning.”

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Ya’ Think? ‘Child With Autism May Affect Family Income’

Child With Autism May Affect Family Income.

This is the headline from many different sites from the past couple of days. Don’t get me wrong, I think it’s great that they are studying how poor we all are. Wait. That sounded bad. But really, was there really any doubt?

The staggering effects of having one child with autism go far beyond finances and stress-loads. It’s a socio-economic crisis as more and more children are being diagnosed. How many families are like ours, with two or even three children on the spectrum? Out of those diagnosed, how many are severely autistic, requiring more interventions, therapies, household costs, additional budgetary concerns, and the list goes on.

I recognize the importance of researchers needing verifiable data upon which to base further research. I do. How about we consider their statistics and compare them with the National averages? Hm. I guess that’s something I could do.

But then again, I have three little guys who are autistic. I have more important things to do than verify how dismally my income compares with National averages, much less how many of my peers are in the trenches with me — tired, poor, and maybe just a little overwhelmed.

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Filed under Advocacy, Autism, Family, Parenting, Questioning, Research, Special Needs, venting

Autism and Cops- When Two Worlds Meet (via Autism Speaks Official Blog)

Considering Public Scrutiny

This post on the Autism Speaks blog reminds me why I don’t have to fear every social interaction my three boys and I have. My guys are all unique in their own way, but all three share the diagnosis of autism. In this they are all unique as well. Strangers on the street, in the stores around town, they sometimes remember one or all of the boys. They sometimes ask about them, not because they are remembering ‘that little autistic boy’ but because they are remembering one or all three unique, mischievous, sometimes-stimming, and always-entertaining boys.

As parents of (or in Josh’s case, sibling of) someone who is autistic, who has some developmental delay or disorder, we sometimes fear interactions with those in authority because we fear their reactions to our loved ones. In the same way, we sometimes fear society at large and their reaction to our loved ones. To us, the mannerisms and sometimes-strange looking things our guys do is part of who they are, something normal. But to those on the outside, they do look different, and those mannerisms do sometimes stand out.

Remembering that the way our guys act, talk, don’t talk, walk, skip, or otherwise interact with their world is something we are aware of by default. We can’t assume others won’t notice. But we don’t have to fear their scrutiny. Instead, using these opportunities to even simply say “they have special needs” or “they are autistic” or even, sometimes “you know, they don’t understand why you are upset and I don’t care.” Okay, maybe not the last one (although on one occasion I did use a variant of that one). The important thing is to remember your loved one is doing nothing to be ashamed of, they are not individuals to be ashamed of.

Celebrate them, love them, and explain their actions if you have to, but don’t apologize when they are just being themselves.

♥Kat

Note: Sometimes, it is appropriate to apologize if they cause a disruption in a public place, even to have them apologize if they cause a disruption, but never for acting in that way to being with. That’s how we act in public with my guys. It’s a subtle distinction I am careful to make. How do you handle public instances? What about Josh and Andrew’s story?

Autism and Cops- When Two Worlds Meet This ‘In Their Own Words’ is by Joshua Bongawil, a former intern at Autism Speaks. His 28 year old brother Andrew has autism. They live in American Canyon, Calif. When Andrew takes Louie for a walk, he strolls as if both of them are in their own world.  Andrew, in other words, is calm and focused, when he has command of our poodle. … Read More

via Autism Speaks Official Blog

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Thinking about … advocacy

As the parent of special needs kids, I’m often asked about advocacy.

How do you do it?

How do we fight for [insert kid's name] at school? In the community?

Where do we turn for more help?

But that’s not fair, how can we change it?

That last one? That’s a biggie. Because it is easy to complain about all the little things that are unfair when you have a special needs child. Sometimes you feel guilty about it, but the fact is,  you don’t feel like anyone is ever listening to you anyway, so why not? Why not complain? Show of hands, guys, and be honest: have you ever felt like it was just you and your family against the world?

You can’t see it, but my hand is raised high.

That’s one of the ways advocacy comes into play. It forces you to look outside your family and think about the issue and what you want to do about it. You might want to change your child’s IEP – who do you talk to who will explain it to you? Do you have an education advocate working with you and your child? Maybe it’s time to consider one (ps – this is something I and some local advocates do and I’d love to share information with you.  Send me a message!).

Maybe, like us, you’ve been affected by a larger issue. In our case it was restraint and seclusion. It was no longer some unknown catch phrase when it was our little Logan being placed in a rifton chair constantly. But what were our rights? What could we do? Lots of things.  I contacted our advocate, plus I contacted state-level folks. When the answers weren’t coming fast enough, I contacted our superintendent. I contacted a lawyer. I spoke with friends and family. I researched and found out that this was a much larger issue.

And that, right there, was the start of advocating for one specific cause. For us, it began with advocating for our child and has led to letters written to legislators and other persons in a position to effect change. It began with something inherently personal, inherently emotional, and led to a passionate stance on something that I can be a personal advocate for – the restraint and seclusion movement.

Spend five minutes with me and you’ll see I have lots of little things that I am passionate about, that I advocate about. See, advocacy doesn’t start large and organized, it starts with something small, something personal, something that you can feel passionate about. And it grows. As you find ways to become involved in advocating for something you believe in, you find ways to become involved outside of you and your own initial arena. In our case, it has simply meant speaking openly about what happened to our child and what we want to change as a result.

Advocacy starts with one person deciding that they need to make a difference, make a change. And it can start with you.

What are you passionate about? What inspires you to act? To care?


I’ll be posting more on this subject, and have decided to add a page to Kat’s Cafe about the topic. Stay tuned to see what you can do.

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Personally, being a special needs mom …

I wrote this in response to a post on a parenting forum. The mother had one special needs child (severely by the sounds of it) and was pregnant. As is fairly common these days, she has been tested extensively to see if the child she’s carrying could have the same congenital defect her first child had.

Her baby was pronounced “normal” and she faced warring emotions over that declaration. My response, was essentially that this was normal, especially for her.

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Zero Tolerance in the News

Just more discussion on the same, but I like the way this reporter summed up her arguement.

Zero tolerance rules vary among districts – The News-Herald News : Breaking news coverage for Northern Ohio

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