Category Archives: Special Needs

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

Rieger Syndrome – Neat Resource for Parents and Researchers

I don’t often find a new resource worth getting this excited over.

Though I am waiting for a response back from the folks at this site, I would like to encourage anyone looking for a snapshot search of the information available on their diagnosis to check out WrongDiagnosis.com – Here’s why:

Rieger Syndrome @ Wrong Diagnosis

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Filed under Parenting, Rare Diseases, Research, Special Needs, The Rarelink

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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Filed under Autism, Family, Logan, Parenting, Seizures, Special Needs

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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Filed under Autism, Family, Logan, Parenting, Special Needs, venting

Survey says – Blame the Kid (huh?)

Who’s the adult again?

I read a recent post on Disability Scoop  that talked about a new study. You know me and research – my geekiness knows no bounds.

This study looked at what general education teachers think about educating kids with autism. I had to reread the story at first, shaking my head as I did so.

The nutshell: teachers in this small pilot study said they were supportive of bringing kids with autism into their general education classroom. BUT, they don’t think the kids with autism are ready to join them.

The presenter, David Mendell from the University of Pennyslvania, introduced the study at last week’s International Meeting for Autism Research (San Diego).

“Teachers are putting the burden for inclusion on the child rather than thinking about the adaptations that might be necessary in the classroom for that child to be fully included,” Mandell said. “We’re going to have to do some values clarification with teachers.”

Let’s see. The onus is on the kids, who already have developmental disabilities, to do the legwork so that the teachers feel comfortable in having them in their classroom? Or the goal is that the professional might, I don’t know, do their job?

Again, I find myself in awe at study findings, which would, supposedly, represent the views of general education overall.

Is this really the case?

You tell me.

I’ve heard both inspiring reports from teachers in general education classrooms, and I’ve heard horror stories of unnecessary restraint, seclusion, bullying, and harassment.

I find the disparity seems to be in educating the general education teachers about the supports they can and should include, and educating the district as a whole as well.

It makes me wonder, though

My guys have all flourished in self-contained settings. I know, that simple statement seals my removal from the special needs mommy club in some circles. But for my kids, I think it has been the very best I could do for them.

See my recent post about Andy, for example.

Andy (and Bobby)

Andy

Andy’s anxiety would preclude him being able to comfortably work on academic goals if he was also struggling with the anxiety that comes from social pressure and interaction. His placement is in a classroom setting, but he goes to the regular education options for art and music, and he’s involved in many other activities, in a controlled and comfortable way. I don’t think he would have had the same success in a general education setting. We’ll slowly start mainstreaming him into other classes at he enters the middle school; again, in a controlled way to try and protect him.

Bobby

Bobby Up-close

My oldest, Bobby, has pretty severe vision impairments and is moderately autistic, not to mention anxiety triggers his epilepsy. You tell me, is it safe to expect a child who doesn’t easily see his peers, can’t talk with them about any age-appropriate academic issues, and has seizures when he becomes anxious–is it fair to expect him to fit in with a general education classroom? We don’t think so.

Think beyond Bobby’s needs (and he’s flourished in this environment) to the other kids in the general education setting – should their instruction be interrupted because Bobby can’t attend to classroom activities in the academic setting? Bobby interacts with his typically developing peers often, and has been known to give a high five to a kid here or there in the halls. His teacher is one of the football coaches, and he encourages social interaction between Bobby and his classmates and the rest of the school, much less the rest of his typically developing peers.

Logan and his string

Logan

Logan is not close to his typically developing peers socially, emotionally, or academically. He can barely sit for short periods of time for targeted instruction, and even then needs constant redirection and support. He has seizures, during which he stops breathing, when his threshold is low, when he’s significantly stressed, or just because it’s his lucky day.

Is it fair to expect him to conform to the classroom expectations in a general education classroom? Really? I don’t see how that’s fair to Logan or his peers with no disabilities. Logan still has the opportunity to interact with other kids at school, every day, in a controlled way and with all of the supports he needs in place.

There’s inclusion in a meaningful way, and then there’s inclusion for the sake of inclusion. It’s an important distinction. I haven’t seen a better option in our case. Do those options exist, I’m sure they do. But not right around here, and not in a way that I don’t feel will endanger my kids’ health, education, and further development.

Study and original News Story found via Study: Educators Support Inclusion But Find Students Ill-Prepared – Disability Scoop.

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You Don’t have to be Perfect

Writer’s Note: this post talks freely about my Christian faith, of which I am proud. I understand that you might not share my faith, so please don’t take this as a ‘call’ to evangelize. This is, instead, a hard look at what being a special needs parent does deep inside, when we can’t let go of the mistakes we’ve made in life.  –Katrina

Kat's Curiosity - A Look at FaithFaith in Our Parenting

This isn’t a kind of faith that comes easy when you have kids with special needs.

Our worlds are filled with so many doubts and what-ifs already, that in the face of a new diagnosis, or even an older one, we sometimes feel like we made too many mistakes. We hurt, deep inside, because of pain we inflict on ourselves.

I’m not a therapist; I’m just a mom. While it’s hard to sometimes step above the ease of self-recrimination, it has to happen to move forward, to be the strong parent your kids need. One of the hardest things I had to do as I made peace with one diagnosis or another over the years was remind myself that  I am not perfect. I am only human. I will try my hardest, fight with passion and vigor for these very unique little guys. But sometimes I will make mistakes along the way.

  • Sometimes I will yell after a long day and one too many questions.
  • Sometimes I will look away instead of engage my child in the world around them, especially when my repeated efforts don’t always show the results I want, or I need.
  • Sometimes I will feel overwhelmed. Frightened.
  • Occasionally, I will feel my kids don’t need me, that I am not good enough or wise enough to be what they need.
  • Sometimes I will cry. And I will break.

I should stress, this is an ongoing process. Becoming a special needs parent is one of the few things that occurs in one split second, forever changes who you are as a person and who you will become, and takes a lifetime to master.

Not always, but sometimes, I resent God. Usually I am in awe of these little boys and so grateful to have them with me, to have been entrusted to raise and protect them.

Sometimes, in the dead of night after a day filled with one too many seizures, when one of my guys questions this world of strangers who would rather ignore them than interact with them, or when the next diagnosis is one too many.

Sometimes, I am overwhelmed. I am shamed. Guilty. Convinced that feeling this way somehow mitigates the years I have spent championing for these guys, facing those seizures, giving my youngest CPR, or otherwise being there for them.

It doesn’t.

But I’m human. I make mistakes and I misunderstand and I feel–in a world better suited to someone who isn’t already a little bruised from a life well-lived.

In these moment, I turn to my faith. Not in myself, because I will never be perfect, or good enough. I will always find fault with myself and my parenting. My faith, instead comes from my deeper faith, the relationship I have with God. I realize that this is the moment I lose some of you. You don’t believe in God. He let you down. He let this happen.

What strengthens me–because I think the same thoughts sometimes–but what strengthens me, is that His shoulders are broad enough to be weighed down with my pain, my anger, my lack of faith, even. I’m not asking you to share my faith. I understand this is beyond many of you, either because of the weight of living or for other, perhaps more personal, reasons.

But this is a post about me. And sometimes, I need to remind myself why I have the faith I do. Why my faith has been my constant companion during the valleys, and during the celebrations. I won’t ask you to share my faith, but I hope you would understand what it means to me.

One of my favorite new bands, Tenth Avenue North, released a song recently called You Are More and I consider, as I listen, that the lists of all the mistakes people have made is populated by all the mistakes I have made, real and imagined. I invite you to share the video with me, since they have offered it freely on YouTube.

Take a moment for yourself today, and remind yourself, that you are more than the total of your past mistakes. Share my faith or don’t, but please don’t stay steeped in a past you can’t change.

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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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Sometimes a Cold is Just a Cold

In kids who are chronically sick, it’s never that simple

I woke to a groan, the muffled sound of coughing barely discernible.

Logan and his string

Logan was home sick for two days, only going back to school on Wednesday. He was just as eager to play, even though his breathing sounded horrible. His string was as fascinating as always!

The groan was from my husband. The wet-sounding cough, interspersed with soft nonsensical ramblings, came from the kitchen, and was Logan’s wake-up call a few nights ago. Ear attuned to the shuffling as he moved closer to our bedroom door, I nudged my husband and we decided, in a split second meeting of eyes, to see just how sick the little guy was.

He was fine hours earlier as he and his brothers laid down for the night. Now, at two-something in the morning, I listened to the almost lyrical quality of his talking in between the the soft shuffling and congested breathing. It’s amazing how much a child who doesn’t speak can talk.

In less than a minute, his disheveled form appeared framed in the light from the bathroom, hair glowing like fire in a ring around his head. I can wax poetic now, but at the moment I remember looking at the not-so-poetic and quite disgusting green slime smeared across his cheek and still edging, dripping, downward. Snot just isn’t pretty. When it’s colorful, it’s generally a bad portent of sleepless nights, fevers, labored breathing, and even the odd break-through seizure (or a dozen, but who’s counting?).

Fast forward to this morning, and there was a meeting of the eyes again. This time, my husband and I agreed, the cold had done its worst and Logan, thank God, was well enough to go to school. He tends to become more rambunctious when sick, rather than sleepy and still. For the sleep-deprived parent, a rambunctious Logan, sick or not, tends to become a blur of motion and energy which, in my very humble opinion, sicks kids should not have.

What’s the big deal you ask? It’s just a cold. 

That’s just it. A cold is hardly ever just a cold in our house. Logan, who tends to catch colds often, has breathing difficulties when he’s sick. When Logan has a hard time breathing it leads to breathing treatments and seizures. His asthma hasn’t actually flared up for a while now. Which is amazing considering how often the child has had colds so far this year. The seizures, though, have been particularly brutal over the last several months, only slowing in intensity over the last few weeks.

Still, it’s just a cold.

Not when your kid has epilepsy

For Logan, and for lots of kids with epilepsy (as well as lots of kids with other special needs), being sick with even a simple cold can lower his  seizure threshold enough to make having a seizure more possible. A seizure threshold is just the point at which one person might have a seizure (epilepsy.com). Many times, Logan has had one of his “seizure days” because of a simple cold.  A seizure day, for Logan, means that he has continual seizures, spread just far enough apart that giving him rescue medicine isn’t always advisable. Sometimes these are absence seizures, or petite mals. Other times, they are grand mals. In other words, sometimes he just stares off for a few seconds or minutes, and sometimes his body goes into convulsions and he stops breathing.

Have I mentioned that I hate the color blue? Since the first time I had to give Logan emergency CPR (which was more rescue breathing, since his heart was still beating –I checked) because he wasn’t breathing during a seizure, I have hated the color blue. To me–it always brings to mind my child, on the floor, a pale blueish gray, unmoving and nonreactive and moments away from death.

I like that rosy hue, not pink but just a little bit duskier, that signifies my kid is breathing again, that signifies that he lives. I know, I’m a little weird that way.

When a cold isn’t simple

When your kid gets sick easily, and when getting sick means they have seizures, and when having seizures means they tend to stop breathing? That’s when a cold ceases to be a simple cold. Which brings us to another sad, but wonderful fact. When your child is sick, and he tends to have that seizure, the one where he stops breathing, anytime he’s sick … when that child gets sick but it really is just a cold? It’s a rare and wonderful occurence.

This morning my husband and I anxiously listened to Logan breathing, studied his pupils until his eyes blurred indistinctively, and pronounced him fit enough to go to school. While I stumbled to the computer afterward, my husband stumbled to bed. Sleep deprivation is only fun for so long, after all.

In honor of parents everywhere, who watch the sniffles for reasons other than trying to tell what color the snot is.

This is National Epilepsy Week, so read a little more about epilepsy and think of someone you know (or think of a stranger, like Logan). Epilepsy, like most special needs, is never a diagnosis in and of itself. 

With thanks to Rob Gorski, from the Lost and Tired blog, for taking the time read this ahead of time. And with thanks to Francesca. 

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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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