Category Archives: Autism

Developmentally Disabled – label or hype? I say …

Chart showing the increase in autism diagnosis...

Image via Wikipedia

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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Finding Answers we’d Rather Not – Seizures

Logan SleepingIn the silence

I crept in the kids’ bedroom earlier today where Logan was sleeping, after collapsing in fatigue late this morning.

I found him in two ways; as a vision with his pale sheeks and dark lashes creating a picture of innocence that was overwhelming in its intensity; and seizing, his left arm a moving target, disconcernable by the constant, rhythmic beat of his little hand against the Spongebob blanket.

In the same way that I sometimes hate this monster called autism, I am equally captivated and appalled by the beast, epilepsy.

In the back of my mind, the duality of the scene that had greeted me won’t let go. Continue reading

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Help! Solving the Puzzle of Our Non-Verbal Child

Have you been here?

We typically deal with short bursts of Logan angst and anger.

Inability to communicate, combined with frustration and not understanding the world around him, mean that Logan, non-verbal and autistic, will sometimes hurt himself or others, destroy furniture or otherwise rage against the world.

The thing is, yes, Logan does this. Sometimes. But Logan is also highly distractable. I like to call it the gift and curse of a short attention span. The specialist has called it a complete lack of impulse control because of the damage to his frontal lobe. Whatever the case may be, his tantrums usually run to a fast and furious conclusion.

Lately, though, it seems to be getting harder and harder to redirect him, distract him, otherwise pull him from wherever this place in his head is. We’re running out of options, and today we ran out of ideas, steam, and for a while there, a bit of my optimistic personality. Continue reading

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The Things Kids Do

Toilet Paper Fun

Lifting this from my Facebook status:

So, got a call from my neighbor a little bit ago. Logan wants the Camera

Apparently, Logan has found a new use for his toilet paper obsession. My neighbor had called to let me know that he had stuffed and was still stuffing toilet paper enthusiastically into the gap between the shutter and the window pane.

He’s cute … he’s cute … he’s cute … I’ll keep repeating that.

I thought you guys would appreciate the “fun.” Continue reading

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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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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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Hope for Logan (New Research into Non-Verbal Autism)

Non-verbal Autism Research Highlighted at IMFAR

(via Autism Speaks Official Blog)

I won’t go into the individual studies, but the IMFAR highlighted research into non-verbal autism by Autism Speaks grant recipients. The bottom line? Studies are showing that non-verbal kids are capable of understanding far more of their world than given credit for.

As the parent of a child who is non-verbal, this doesn’t tell me anything I don’t know. Yet, the implications are that the research results might lead to further study and development and possibly therapy techniques that will work with these unique kids.

That is a big thing.

And this is why …

Meet Logan

Logan playing with water

From a recent drip to Disney, Logan enjoyed a chance to play with the water, stimming on the stream of coolness as he de-stressed.

Logan, my 6-year-old little charmer, has apraxia – a neurological disorder that makes it hard to for him to associate words with actions, or to express words even when he knows what they mean. It’s more complicated than that. But, similar to his autism, I tend to consider his apraxia another lock on his brain, making it difficult if not impossible sometimes for us to communicate with him.

Signs don’t tend to work, or communication boards. It’s a tired game of intimately knowing and understanding what the few sounds he does utter mean to him, and of decoding the way he acts. He has recently just started dragging us to the desired item, or patting it. I feel this desire to communicate is something we can work with – we just haven’t unlocked the language of Logan yet.

Consistent and intensive speech therapy has helped Logan in the past, but the results themselves weren’t consistent, and we had to fight for any of the therapy to be covered. These days, I wonder if we’ll ever hear him speak beyond the approximations of our names he has gifted us with (His brothers are “dee” for Andy and “bee” for Bobby, while Daddy sometimes gets the closest approximation. I lag, I guess, because he doesn’t attempt my name often, though I still get the occasional “mee” for Mommy).

We’ve occasionally heard him say ‘ball’ and other words, but never with consistency. He used to sign “more’ and “eat” and “drink” but we have to use hand over hand guidance to get him to do so much of the time now.

When his seizure activity increases, we tend to lose ground, and sometimes we don’t gain it back. It’s a constant battle for Logan’s attention, health, and desire to communicate at all, and sometimes I wonder whether we will ever gain some type of consistent, ongoing language with him, ever. And if not, what? If we can’t get him interested and consistently using sign, and he doesn’t seem to understand pictures (he’s shown some limited success at school, but again, nothing we see consistently).

I won’t give up. We still work with him every day to make some kind, any kind, of progress. Maybe we’re looking for the clear and stated when the understated is where we can see the evidence of his understanding of the world around him. Logan understands what we say, sometimes even responds to it. He understands many things. It’s clear when he reacts specifically to something we have said.

The Importance of Due Diligence, of Research, of Hope

These things cannot be overstated. Parents like me, like my husband, we need to see that others are as desperate and eager to find answers as we are. There is hope in the act of researching, and when there is evidence that research is paying off, there is more than hope. There is this idea that we are vindicated.

All the times we said Logan was in there – we just had to find a way to reach him. We were right. Not just because we are his parents know him so well, but because there is research that is proving us right. No, we don’t need this research to tell ourselves to keep trying. But we can point to it when others don’t want to.

♥Kat

What does research like this tell you? Does it give you a new feeling of hope or does it even register in your world of parenting a special child?

Non-verbal Autism Research Highlighted at IMFAR By Leanne Chukoskie, Autism Speaks In 2008, Autism Speaks kick-started research in the area of non-verbal autism through its High-Risk High-Impact initiative. This year at IMFAR, Autism Speaks-funded research was featured in the Invited Educational Symposium titled Characterizing Cognition in Non-verbal Individuals with Autism: Innovation, Assessment and Treatment. Geraldine Dawson, Ph.D., Autism Speaks’ Chief Science Officer, chaired the session … Read More

via Autism Speaks Official Blog

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