Accepting a bit of Insanity

Depression: a misunderstood reality
From my “Moving Forward: The Early Years of Redefining Me”
… It was in the midst of all this therapy and all these different visits that I began to struggle to emotionally handle the strain of two special needs kids. My sense of self, tied to how well I handled all the kids’ various medications, appointments, and therapy sessions, began to splinter. My emotions began to spiral downward.

I convinced myself–in the way only a person who’s hit bottom

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Summer Fun and Perfect Moments

Enjoying Summer–Family Time and Giggling Kids
This week, the first week the kids were out of school for the summer, was a chance for DH (dear husband *grin*) and I to start slowly introducing elements of their summer schedule to them. While we have many plans, we also know how difficult it is to always get out and about because of their combined needs.

As part of getting them out of the house and enjoying the sunshine, we (*gasp*) sometimes bribe them with fun activities like playing in

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Summer Fun and Perfect Moments

Enjoying Summer–Family Time and Giggling Kids
This week, the first week the kids were out of school for the summer, was a chance for DH (dear husband *grin*) and I to start slowly introducing elements of their summer schedule to them. While we have many plans, we also know how difficult it is to always get out and about because of their combined needs.

As part of getting them out of the house and enjoying the sunshine, we (*gasp*) sometimes bribe them with fun activities like playing in

Read more at the Cafe …

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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.

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.”

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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

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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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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