I Am An Autism Parent

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Help Military Families Get Autism-Related Therapies for Their Children

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In five minutes, you can make a difference in the lives of a lot of families.

Go to the A Diary of a Mom blog, read her post, and act. All you have to do is click and send a message to your Representative in Congress. It’s that simple, but it will make a huge impact.

Military families should have access to autism-related therapies as part of their health care. Imagine being deployed somewhere across the planet and worrying about your child getting the care they need. I get upset just being at the grocery store for an hour worrying about my kids. Now imagine being 10,000 miles away for a year or more. Imagine being moved from place to place every couple of years. I can’t imagine how hard all this is.

But you can do something about it. I’ve already contacted my Representative. It took me five minutes. Take five minutes and join us in this effort.

Take a Deep Breath

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A goodly amount of crap has happened in the Flashlight household since the end of last year. A lot of time, I’ve just been paralyzed by the drama. Now that it seems to be (mostly) resolved, I may be able to write coherently about it.

Back when I was in the hospital in November/December, one of the things they told me was that they “caught sight of something in my lung” when they did the scan of my abdomen. “Probably nothing,” they said. “We’ll check it again in four months.” Cue me, worrying. Because we’ve certainly been told “probably nothing” about other issues that have turned out to be Something.

Also, when the IV pole fell on me, it caused a deep muscle bruise on my left shoulder. I’m left-handed, and I carry the kids in my left arm. No strain there. I also managed to catch my foot trying to step over a baby gate, and fell… onto that arm. “Probably a torn rotator cuff. Probably needs physical therapy.”

During the winter break, we finally got notification that we could get some other “out of school” help/therapy for the J-man, because for a while now, home time has been difficult. Number of therapy visits are dependent on my health insurance.

Then, in the beginning of January, my team at TCTSNBN was informed that layoffs were coming. We got 2 weeks to stress about whether we were chosen, and then those who were chosen were told. I was one of the chosen. No stress there, right? I mean, I’m just the primary breadwinner AND the holder of health insurance. Not like I could need either of those things!

TCTSNBN, in their infinite wisdom of this round of layoffs (and this round for my team involved THIRTY PERCENT of our US based employees), gave us 60 days on payroll to find another job within the company – or without the company, but 60 days either way before severance kicked in. The severance package was also pretty good, but GAH – health insurance!

I immediately sent individual emails to everyone I’d ever worked for within the company – or even people I peripherally worked for. I readied my resume over that first weekend, and eventually applied for 48 different jobs within the company. I had some immediate rejections (always good when a script tells you “Not Qualified”) but also a good number of “Resume Forwarded to Hiring Manager” replies. One of those jobs was one I probably wouldn’t have applied for because I didn’t really meet the written qualifications, but one of my contacts had sent my resume to the hiring manager, who asked me to apply.

There followed a round of interviews – many of which stopped after the first question of “Why do you want to relocate to random-very-cold-Midwest-city?” – and an interview with the hiring manager who had asked me to apply. THAT one went very well, and at times I felt like I was interviewing the manager instead of the other way around. I felt pretty confident, but it was OVER A MONTH after that interview before I got an official offer letter… and only 6 days before I would have gone off-payroll. Whew!

I started physical therapy 2 weeks ago, because my shoulder had gotten so bad that I couldn’t take a deep breath without wincing. The J-man’s getting 12 hours a week of developmental therapy, at our home, and the lady is awesome with a side of awesomesauce. I had my 4-month follow-up CT scan, and the place in my lung is actually getting smaller.

Included in the results was the comment that the bilateral atelectasis (essentially, it means I couldn’t take a deep breath, probably from the pain) noted before was now resolved.

Resolved indeed. Deep breath in. Deep breath out.

Sensory Processing Disorder and the DSM-V – Call to Action (Urgent Update!)

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[Urgent Update! The deadline to submit comments about Sensory Processing Disorder (SPD) for the DSM-V is Tuesday, April 20, 2010. If you haven’t yet done so, please send your comments very soon! This is not only critically important for autistic children and adults but for all people who struggle with sensory challenges. Make this part of how you observe Autism Awareness Month. See below for the background information I posted last month on this issue and how you can submit your comments to the right place.]

I’ve said in the past that Sensory Processing Disorder (SPD) – sometimes also referred to as Sensory Integration Disorder – had little or no chance of making it into the upcoming DSM-V. (DSM = Diagnostic and Statistical Manual of Mental Disorders; V = 5th Edition) Turns out, I’m wrong, and I’m not sure when I was last this pleased about being wrong. We have an opportunity we won’t get for almost another generation, so get ready to act.

In short, the DSM is where standard, accepted diagnoses for a huge range of conditions come from. It is the bible for most everything we deal with medically as parents of autistic children. The DSM is one place – and for autism the place – where those five-digit codes (aka ICD-9 codes, e.g., 123.45) you might see on medical forms and reports come from, and it’s the manual that governs our lives with autism more than any other in the health care system. More importantly, this is how things get billed to your insurance, recorded in all sorts of forms as your children are evaluated and treated, or otherwise processed in the realm of health care. Essentially, without one of these codes, it doesn’t exist.

Because SPD isn’t in the current DSM (4th Edition), for all intents and purposes, it doesn’t exist. Of course, all of us with sensory kids know better, but your insurance provider doesn’t care. If you’ve been getting sensory-oriented occupational therapy paid for by insurance in the U.S., your therapy provider has most likely been creatively coding it to get it paid for.

If you’re like us, it’s been billed as more general occupational therapy, of which we get 30 visits a year. Once that runs out, tough. Pull out your wallets. OT limits set by insurers often assume a temporary condition, which obviously does not apply to autism, sensory processing issues, or most anything else we deal with. This makes a 30-visit annual limit profane. And that’s why this is so important.

The SPD Foundation has done an amazing job getting everything organized so you can know exactly how to make your voice heard and how we can all work together to get SPD in the new DSM. The American Psychiatric Association (authors of the DSM) is now accepting public comments on SPD, so this is the time to act. The more data and stories they collect about children and families living with and trying to overcome the challenges of Sensory Processing Disorder, the more likely they will be to include SPD and do so in a way that will benefit our children and millions more.

Here are the links:

Please read these pages carefully before you go and submit your comment to the DSM publishers, particularly the tutorial on how to prepare your comments. For example, don’t talk about insurance benefits; even though that’s critical to us, the DSM authors are there to create standards for medical diagnosis and not wrestle with the nightmares of health insurance.

And remember, the public comment period allows everyone, not just parents, to submit something. Parents, adults and adolescents with SPD, physicians, psychologists, occupational therapists, teachers, researchers, and anyone else who works with or diagnoses persons with SPD can comment. So share this call to action with all those people you know.

The DSM is only revised about every 15 years. That’s not a typo. So we won’t get another chance at this until probably the late 2020s. This is a defining moment for autism and all children with Sensory Processing Disorder, whether they are autistic or not. Go tell your story, and let’s make this happen.

Sensory Processing Disorder and the DSM-V – Call to Action

by

I’ve said in the past that Sensory Processing Disorder (SPD) – sometimes also referred to as Sensory Integration Disorder – had little or no chance of making it into the upcoming DSM-V. (DSM = Diagnostic and Statistical Manual of Mental Disorders; V = 5th Edition) Turns out, I’m wrong, and I’m not sure when I was last this pleased about being wrong. We have an opportunity we won’t get for almost another generation, so get ready to act.

In short, the DSM is where standard, accepted diagnoses for a huge range of conditions come from. It is the bible for most everything we deal with medically as parents of autistic children. The DSM is one place – and for autism the place – where those five-digit codes (aka ICD-9 codes, e.g., 123.45) you might see on medical forms and reports come from, and it’s the manual that governs our lives with autism more than any other in the health care system. More importantly, this is how things get billed to your insurance, recorded in all sorts of forms as your children are evaluated and treated, or otherwise processed in the realm of health care. Essentially, without one of these codes, it doesn’t exist.

Because SPD isn’t in the current DSM (4th Edition), for all intents and purposes, it doesn’t exist. Of course, all of us with sensory kids know better, but your insurance provider doesn’t care. If you’ve been getting sensory-oriented occupational therapy paid for by insurance in the U.S., your therapy provider has most likely been creatively coding it to get it paid for.

If you’re like us, it’s been billed as more general occupational therapy, of which we get 30 visits a year. Once that runs out, tough. Pull out your wallets. OT limits set by insurers often assume a temporary condition, which obviously does not apply to autism, sensory processing issues, or most anything else we deal with. This makes a 30-visit annual limit profane. And that’s why this is so important.

The SPD Foundation has done an amazing job getting everything organized so you can know exactly how to make your voice heard and how we can all work together to get SPD in the new DSM. The American Psychiatric Association (authors of the DSM) is now accepting public comments on SPD, so this is the time to act. The more data and stories they collect about children and families living with and trying to overcome the challenges of Sensory Processing Disorder, the more likely they will be to include SPD and do so in a way that will benefit our children and millions more.

Here are the links:

Please read these pages carefully before you go and submit your comment to the DSM publishers, particularly the tutorial on how to prepare your comments. For example, don’t talk about insurance benefits; even though that’s critical to us, the DSM authors are there to create standards for medical diagnosis and not wrestle with the nightmares of health insurance.

And remember, the public comment period allows everyone, not just parents, to submit something. Parents, adults and adolescents with SPD, physicians, psychologists, occupational therapists, teachers, researchers, and anyone else who works with or diagnoses persons with SPD can comment. So share this call to action with all those people you know.

The DSM is only revised about every 15 years. That’s not a typo. So we won’t get another chance at this until probably the late 2020s. This is a defining moment for autism and all children with Sensory Processing Disorder, whether they are autistic or not. Go tell your story, and let’s make this happen.

Stop the Screaming

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Normally the worlds of Seth Godin – marketing and business guru – and autism don’t directly intersect. I do think he has incredible insights we could learn from about blogging, building communities, and organizing ourselves into effective advocacy for our children, but that’s for another day.

I wanted to draw attention to his recent post “Willfully ignorant vs. aggressively skeptical”, which I think captures my deep frustrations both with the health care and insurance reform debates here in the U.S. and all the civil wars great and small going on within the ‘autism community’. (Still searching for a better term.)

Here are some money quotes:

The screaming is a key part, because screaming is often a tool used to balance out the lazy ignorance of someone parroting opposition to an idea that they don’t understand.

As people of my generation are known to say, “Word.” There’s not a syllable in there that I could change to make that more true.

It’s easy to fit in by yelling out, and far more difficult to actually read and consider the facts.

I imagine that will sound plenty familiar to those of you who have been witness to or part of all the ‘debates’ going on regarding autism. Shouting down dissent has become a reflex for some.

I have repeatedly heard people yelling at these protests some screamed variation of, “I want my voice to be heard!” My reaction – No, you don’t. You want people to just give you and your views credibility and give you all the benefits of a seat at the table without having to do any of the work.

Allowing someone else to talk would create the possibility – heaven forbid – of dialogue and conversation, both of which require learning enough about your views to argue for them effectively, self-examination, long-term commitment, and, well, stuff that looks and feels like actual work. But I can see that since dialogue could expose someone who hasn’t bothered to do their homework, people in that position would find yelling to be preferable to either that or going ahead and doing the work.

It’s hard for me to think of a more critical issue facing this generation and our children than health care. This quest to find the best possible system of care and access to it – regardless of your views – requires our best efforts and utmost commitment to ensure the health and well-being of our families, communities, states, and country.

I imagine I’m mostly preaching to the converted here and the people I’d like to say all this to wouldn’t likely ever read our blog. But I’ll say it anyway.

Being lazy, parroting the idiocy of others, yelling without ever listening, and not bothering to learn anything disgraces our nation and what we stand for. And most of all, it disgraces our children and the trust they put in us.

Just. Stop. It.

Update – Stimulus Package, Special Education, and a Lot of Confusion

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OK. I’m thoroughly confused. I can’t find a straight answer on exactly what the latest ‘compromise’ is, but from what I’ve been reading, it sounds like special education funding was salvaged to something back to its original funding levels. This is in spite of the overall pool of money going to states toward overall stabilization of their massive budget shortfalls being cut significantly.

It looks like school infrastructure investments got hit hard, though. I can’t find any reliable information about other disability services and vocational programs at this point. If you know what the heck is going on, I’d love to hear from you.

And as a general comment, if you know someone concerned about funding special ed not stimulating the economy, you should tell them about the massive backlog of everything in the school systems and county agencies, the complete lack of adequate numbers of teachers and therapists in the vast majority of counties, and argue that, hey I bet hiring more people would help some of this!

Whatever passes the Senate – presumably by Monday – will lead to a group of Senators and Representatives locking themselves in a room for a conference committee and hashing out what will ultimately go to President Obama’s desk. Conference committees are confusing things. At least I don’t understand them. Though it seems like anything from tax rebates for bloggers to investments in alternative energy from harnessing methane from cows could be in that final bill for all we know at this point.

Anyway, enough soapboxing. None of this is a done deal, so keep contacting those who represent you in Congress!