The new incidence rate for autism is 1 in 88 children. Wednesday, May 9 2012

New incidence numbers came out last month, and the CDC announced that the rate of autism is 1 in 88 children and 1 in 54 boys.  Those are epidemic level numbers. However, I waited to post about this until almost everyone else had their say.  My reason is pretty simple. This incidence rate doesn’t change anything for me personally.

3 Responses »

 

Rock for autism 2: Updated song list Sunday, Mar 7 2010

Okay, I know everybody (ie me) loved my last music and autism post, so I thought I would share some of my son’s new favorites.

1. Them Crooked Vultures – New Fang I’m not sure what he things this song is about, but he sure smiles when its playing and requests it when its not on. Heavier, which surprises me a little as I thought it might be a little overstimulating. Apparently I was wrong.

2. Them Crooked Vultures – Elephants I’m pretty sure Raymond thinks this song is about Horton from Horton Hears a Hoo. I say that because I’ve caught him humming it while recreating the bridge scene with some thread and a toy elephant.

3. Led Zeppelin – South Bound Suarez Lots of piano, good bounce, great vocals. This one makes sense to me. It also happens to be one of my favorite Zep songs, so that doesn’t hurt.

4. Frank Zappa – Apostrophe Normally my boy is not a big Zappa fan, which is more than a little disappointing to his dear old dad, but he sure loves this tune. I think it might be all the low frequencies from the phenomenal bass solo.

5. Old Crow Medicine Show – New Virginia Creeper Although it is more of a metaphor for something else, he likes it because it has lots of train words and sounds. Also, he refers to OCMS as “farm music” which cracks me up.

6. I don’t know the name of the song, but he made me go back to a Taproot song while I was flipping through stations the other day. I was surprised as it was a really heavy song. Maybe his tastes will mirror mine a little more than I thought.

If you are a music nut like me and you want a social platform to share it on, I recommend Blip.FM. Blip let you play your own song list and make friends who like similar music. If you want to check out my blip stream, you can do so at http://blip.fm/InfamousRAY. Raymond and I hope you dig the tunes and I’ll post again soon.

Leave a Response »

 

An open letter to Governor McDonnell about cutting the EDCD waiver. Friday, Feb 19 2010

Okay, for those of you who don’t know, Virginia is facing deep budget cuts like every other state of the union. Luckily we elected a governor who refuses to raise taxes to keep essential services in place.

Let’s pause to let that sarcasm sink in.

Apart from the deep cuts in education across the board, our governor is targeting medicaid. Specifically, he is targeting the waiver system. For those who don’t know what a waiver is, I will give you a brief explanation. The Virginia waiver system is a medicaid funded way to pay for specific essential services for your disabled child or adult. We have an Intellectual Disability (ID) waiver, a Developmental Disability (DD) waiver and an Elderly or Disabled with a Consumer Direction (EDCD) waiver. The reason the EDCD waiver applies to many of our kids is because they evaluate eligibility based on Activities of Daily Living (ADLs) which are deficits suffered by developmentally disabled kids as well as elderly disabled folks.

Our governor is not just planning to limit the budget on these services. He plans to cut the program altogether. Let’s look at how that will affect our commonwealth. The EDCD waiver allows the parent or guardian to act as the employer of respite caregivers. What this means is that everyone who is now employed as a caregiver under this program will lose his or her job. In addition to those jobs, everyone on the state and local level who administers the program will lose his or her job. Finally, and this is really the worst thing, parents who can’t afford to hire help and do not have family who will help out will lose respite care.

I know respite care doesn’t seem like much, but if you are a parent who has a kid that screams, squeals, doesn’t move, can’t walk, or any number of other issues, when do you find time to shop for groceries? When do you buy clothes, diapers or any of the other things we need to keep our lives running? What if you are a single parent who is doing this alone because your partner left when he or she heard the word “disability?” To that end I penned this short and angry missive to our executive.

Governor McDonnell,

I have read both your budget and your web site thoroughly and have found several inconsistencies between what your site claims and what your proposed budget will do to families in the Commonwealth. I have noticed that you have a strong family component on your site, but one of the primary savings in your budget is the removal of the medicaid waiver system that is controlled by families. Removing these funds will damage families across the state. These families rely on the ability to hire and fire their own employees to work with their special needs children. This empowers families and allows them the freedom to find the best possible help to assist with their special needs kids. Imagine not being able to see a movie with your child. Can you picture not being able to take your kid in public because he or she is too loud, moves their hands incessantly, makes loud squealing noises, hurts himself or has tantrums every 5-10 minutes? Can you imagine how hard it is to maintain a marriage in the face of that kind of pressure? When a child demands 80% of your attention, when do you find time to pay your bills, clean your house, go grocery shopping or do any of the other 10,000 things we have to do in our society? Respite care helps get that done, and Virginia saves money by making the parents the employers. That’s right. We don’t ask Virginia to hire and fire these employees, pay them vacation or pay for health insurance. The screening and evaluation is handled by the families themselves, and the families receive no reimbursement for doing this work. However, it is worth it to us because it gives us control over the people who will work with our kids. Not just that, these waiver cuts will affect the elderly. Why would you cut the primary source of funds for the most defenseless segments of our society? If these cuts are made, the people who will pay the price will be Virginia families. Those who have the wherewithal will not suffer as much, but what about the families who do not have the money to hire help? The parents get divorced and their kids end up in institutions. The family dies. This is the message you are sending to Virginia’s special needs families. Please reconsider. Our families deserve better than this.

Ray Nelson

If you live in the Commonwealth of Virginia, please make your voice heard on this. You can contact the governor via his website.

I heard McDonnell on morning radio saying things like “I know these cuts will have a human cost.” What the hell does that mean, Bob? The human cost is this: If you cut these programs and turn your back on the poorest and weakest in our society, their fate is on your head. You bear the responsibility of their early deaths, their bedsores, the divorces and the eventual homelessness. I hope your God can forgive you for that, because I cannot.

14 Responses »

 

A few definitions, concepts and other stuff Monday, Dec 22 2008

Okay, I began thinking that I’m probably somewhat jaded with the terminology associated with autism, biomedical intervention, therapy and the like. On that note, I felt a glossary of sorts might help people sort things out regarding treatment options and ideas. If some of this seems elementary, keep in mind I am trying to make this as simple as possible. These are in no particular order, although I may edit and alphabetize them in the future.

Nutritional supplement – vitamins, enzymes, transfer factor, probiotics, most antivirals and antifungals that are not prescribed by a physician.

Homeopathic, homeopathic remedy – any preparation made according to homeopathic rules, typically not recommended for use unless under the care of a homeopath or naturopathic doctor

Prescription drug – any drug prescribed by a physician

OTC drug – over the counter drug, no prescription necessary

Vitamins – nutritional supplements that are either single or mulitple vitamins to supplement intake

ND – naturopathic doctor

GFCF – Gluten Free Casein Free diet, very popular in the ASD community.  Variants are GF for gluten free and CF for casein free.

SCD – Specific Carbohydrate diet, and specialized and restrictive diet designed to help find out what allergies are present

Feingold – an ADHD diet that removes food additives and salicylates to treat ADHD and certain ASD behaviors by removing irritants and allergic material

Now let’s talk about some therapies.  I know the ASD savvy will know most of these, but this is also for folks who don’t know anything.

OT – occupational therapy

SI -Sensory Integration, a specialization in the OT field

Sensory Diet – certain sensory activities done on a regular basis to help overcome emotional and physical sensory processing difficulties

PT – physical therapy

Speech – speech therapy

ABA – Applied Behavioral Analysis, a type of behavioral therapy, currently the gold standard in ASD treatment

DIR, DIR/Floortime – Developmental, Individual Differences, Relationship-based approach, another type of behavioral therapy

RDI – Relationship Development Intervention, yet another type of behavioral therapy

Now let me put some of it in perspective.  I chose these terms because

A) the were the first ones that came to mind, and

B) we use most of these terms in our household and chatting with our friends about autism and ASD.

First off, the biomedical terms are especially useful when dealing with nutrition.  For example, My son Raymond is on a CF diet and takes no prescription or OTC drugs.  We are starting Feingold at the beginning of January, but will still remain CF.  Raymond takes specific, measured amounts of nutritional supplements, homeopathics and vitamins under the care of his pediatrician. His pediatrician is not an ND or homeopath, but has received training in both areas and uses them regularly in her practice.

Obviously knowing the code is half the battle when talking about autism and ASD.  Now let’s talk about therapies.  Once again, I will use my son as an example.  Raymond attends speech and OT with local practitioners. His OT specializes in SI and has given us a sensory diet to help Raymond develop and maintain his emotional stability and self regulate. We also use DIR/Floortime to help Raymond better understand communication and how it works.  We considered ABA and RDI, but felt that DIR was the best alternative for him based on his function level, play style and ability to overcome challenges.

Naturally, there are a thousand more terms I’d like to put in here, but I feel like this post is long enough.  I’ll be throwing some more posts like these in my blog, as well as exploring these therapies and why we chose the therapies we use, but for now I’ve got to go chase after my son before he dumps another container of syrup on his trains!

Leave a Response »

 

Introduction, statement of purpose and exposition. Thursday, Nov 6 2008

Hello all. I’m blogging this because I feel like I have to tell my son’s story. Not just for him, but for me. I need to wrap my head around it fully, from start to finish, and I think this blog will help me deal with some of my emotions and frustrations about his challenges. My son’s name is Raymond, and he has high functioning autism in addition to dyspraxia, hypotonia and hyperlexia.  As a parent, emotions run high regardless.  As the parent of a special needs child, I swear the emotions are on hyperdrive.

So a little background.  I’m a REALTOR, play drums in a rock band, just became a Master Mason in my local lodge and love my wife Kelly.  She is really my rock.  I have to say that I don’t know how the single moms and dads do this.  I would go crazy without her help, and I’m pretty sure she feels the same way about me.  We live close to family, which is good, because Kelly’s parents have been a tremendous aid to us.  They give us free child care, and even let him sleep over one night a week so have a respite.  Without that, I’m not sure either of us would be sane.

I guess the biggest thing I want to get off my chest to start is the denial period I went through when I finally realized he had autism.  As a dad, you feel obligated to protect your child from the world somewhat, and I went through a period where I literally thought keeping Raymond undiagnosed was protecting him somehow.  I was miserable, and had a great deal of difficulty accepting that my son, the light of my life, was impaired or damaged somehow and I couldn’t fix it.  I mean, I’m dad, so if I can’t fix it then it must be terribly, terribly broken.  I wondered if there was something genetic that I contributed that damaged him, or if some of my habits from younger days might have hurt him somehow.  I felt powerless, which is not how I am accustomed to feeling.  I’ve always been confident and assertive, but autism just destroyed me.

In hindsight, I now realize that was my long dark night of the soul, where my ego was destroyed in order to allow me to grow.  As I rebuilt myself, I realized there was hope.  My son was not dead, after all, and autism is a very different diagnosis than it was even 10 years ago.  I began to hope, thanks to a number of people I read on the internet, frustrated moms and dads who were sharing their story both to help others and to heal themselves.  I’m doing the same now, because if it only helps one other kid, then all my time here will be well spent.  I feel like I owe those people something, and want to pay it forward.

So that’s what I’ve got for now.  Its hard for me to write some of this, as the pain is still fresh. However, stay tuned.  I will be throwing my initial posts from my old blog up on this page, mainly because I couldn’t finish it then and it is a pretty concise backstory.  Also, I’m not even trying to keep this chronological.  That’s not how I think, and I want to share things as I think of them, so I’ll be jumping around in time a lot.  Anyway, welcome to my blog, feel free to comment and I hope you get something good out of it.


var gaJsHost = (("https:" == document.location.protocol) ? "https://ssl." : "http://www.");
document.write(unescape("%3Cscript src='" + gaJsHost + "google-analytics.com/ga.js' type='text/javascript'%3E%3C/script%3E"));

try {
var pageTracker = _gat._getTracker("UA-7886417-1");
pageTracker._trackPageview();
} catch(err) {}

Leave a Response »