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Autism and the Nursery Witch October 19, 2009

Posted by hopeauthority in Autism, Children, Family, Health, special needs.
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No sooner did I wrap my mind around the first article with the big jump in autism stats…1 in 100 instead of 1 in 150…but right on it’s heels comes the latest figures. 1 in 91.

1 in 91.

Anyone else feeling sick?

It brings a recurrent and ridiculous vision to my mind.  I am standing outside the glass of an insanely large maternity ward, looking in at rows and rows of newborns… with their cute smooshed faces and their arms tightly tucked into their cocoon-like wraps. Soft little beanies of pink and blue atop misshapen little heads. There’s about 100 of them all lined up. Or should I say 91 of them.

And like some sick, twisted fairy tale, there’s a witch hovering over one of those beanies…a blue one… casting a frightening spell that will manifest itself in about 18-22 months, upon the happening of a certain event.

I want to shoo the witch away, but I am too late. I want to hear what she is chanting, but the glass is too thick. I need to know what will trigger the spell to come to pass.  Some environmental toxin? Some vaccine? Some seemingly safe food that wreaks havoc on the digestive and immune systems…not too far off from the poison apple?

There are still days that I can’t believe that my blue beanie was the one.

I remember shortly after Fabio was diagnosed 5 1/2 years ago…before I told anyone but the closest  family and friends… I was at a carnival and spotted a woman with a boy about 5 years old. She wore a tee shirt with all the stats about autism on its back dating  from the time it was 1 in 10,000 until the present. At that time, the most recent stats were 1 in 250.  It cryptically stated: “Your child could be next”.  I could not take my eyes off her, her child, or her shirt.

Back then, I was haunted by that shirt and so worried about my son’s future. I still worry about his future…every day as a matter of fact. But the idea that the numbers of children being diagnosed with ASD are rising too quickly to even make up such a tee shirt…now that’s a scary thing. 

At this rate, it’ll be 1 in 75 by Christmas.

Someone really needs to kill that nursery witch. Fast. The survival of all our beanies depends on it.

Autism Statistics Now 1:100! October 5, 2009

Posted by hopeauthority in Autism, Children, Family, Health, Parenting, special education, special needs.
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There’s many stereotypes and generalizations about autistic kids. Like they don’t handle change well…they like routine…they hate transitions. Well, maybe the apple doesn’t fall far from the tree in this house.

I was on a roll with this blog when my aunt passed away in May. For three and a half months, I found it hard to carve out the time for blogging. It’s not about just posting comments, but also about reading those of others. It’s about sharing and connecting.

My aunt died. My routine was broken. I was unhappy about both. Then a new routine of not blogging set in without me really realizing it. And then that became a hard routine to break.

And so much has happened that was newsworthy in the public eye… as well as in our private life… that caused me to at least think “I gotta get back to my blog!” Yet I didn’t.

I let horror stories go. I didn’t pay proper respects at the loss of Ethel Kennedy Shriver, or of local autism heroes. I’ve been lax in reporting Fabio’s HBOT progress or any of his milestones and challenges. There’s a 100 posts in my head that never made it to the screen.

But today, in Newsday, my local newspaper, an article by Carla K. Johnson, entitled, New study  reveals worrisome autism numbers, jogged me out of my fog and sent me running to the computer:

Two new government studies indicate about 1 in 100 children have autism disorders–higher than a previous U.S. estimate of 1 in 150.

Suddenly, I am moved to write again. But I am speechless. 

Perhaps a moment of silence would be best…

The Mainstreaming Experiment April 21, 2009

Posted by hopeauthority in Autism, Children, special education, special needs.
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Today, Fabio had his first taste of a typical classroom. Just a taste.

And I am thrilled to report that it was freakin de.li.cious!

My little guy has worked so hard this year. A few months ago, he got to mainstream into a typical first grade class for gym. He happens to be very athletic and coordinated, so we reasoned that gym would be a good place to start mainstreaming. And because that’s gone so well, I suggested at his April 1st IEP that we consider experimenting with a more traditional and structured subject.

His teacher agreed and Fabio is now going to spend some time each day in Reading in a typical first grade class of about 25 kids. Starting today.

I wanted to call the school, like 15 times, to see how it went. I was imagining the worst.  Would he even go into the classroom? Would he melt down from the terror and be unable to transition? Would the teacher be supportive? Would the kids be nice? I could barely wait til the little bus brought him home to find out how it went.

Me (excitedly): So, did you go to Mrs. L’s class today?

Fabio: Yes.

Me: Well, how was it?

Fabio: Good.

Me: Tell me what you did. Did you read with the other kids?

Fabio: I want Noggin, please.

Argh. So close…yet so far. This is going nowhere. I know…I’ll check the communication notebook for a note from the teacher (who was forewarned that failure to send a note home with details would result in a frantic phone call instead).

There I found it. The note. It said:

Fabio had a great day. He went to Mrs. L’s class for reading. NO BEHAVIORS!  He raised his hand and participated in class. He was very interested in the new environment and was looking around the room. Fabio continues to do well in mainstream gym and he’s making friends.

I stood there and took it all in for a moment. Unable to speak. Joy and hope daring to well up inside me.

No behaviors? Raised his hand? Participated in class? Is making friends?

The words assembling a vision in my mind of my little boy… who works so hard… bravely facing this major transition. Boldly crossing over from his autistic class to a typical one…just for awhile. Overcoming all the social, behavioral, and sensory obstacles of his surroundings that no doubt were bombarding him the entire time. Mentally slaying those dragons.

The journey is long and hard. But it’s days like this that replenish the spirit.

I am so proud of my little boy. So, so proud.

It’s Autism Awareness Month…Yip-pee! April 1, 2009

Posted by hopeauthority in Autism, Children, Health, Parenting, special needs.
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Well, its April again.

Already.

I don’t like April.

There’s April showers. April Fools Day (for people who actually have time for pranks and laughter). Allergies. Taxes. A big freakin school vacation to disrupt routines and invite regression and highlight social isolation. Oh, and there’s Autism Awareness Month, of course.

So the whole world will suddenly step up its efforts to be “aware” of autism … for thirty whole days. There will be lots of news articles and Jenny McCarthy sightings, talk shows, and some fundraisers… for thirty whole days.

Good-bye rollover minutes!  I will get copies of every article, plus tons of phone calls reminding me to watch every autism story from everyone who has ever so much as heard of my son having autism… from my Great Aunt Lizzie’s gardener’s nephew to my cousin John the hairdresser’s clients… for thirty days.

I swear, long before the May flowers sprout, I’ll have had my fill of the many “helpful” souls who just show up in April and pass along some autism “news” simply to make themselves feel better. I especially love the ones who tell me about how a special diet may help… Fabio’s only been religiously following one of the most restrictive diets ever made for the past four freakin years. Anyone who has spent more than three hours with my family would know that.  

In fact, there’s only one thing that feels longer than those thirty days in April …it’s the remaining 11 months of the year when the “awareness” fades away and nobody calls… or visits… or helps… or cares.

We don’t need Autism Awareness Month. Or Autism Awareness Day.

We need Autism Awareness Daily. Right Now.

“High Cost of Autism” Makes the News…well, Duh! December 1, 2008

Posted by hopeauthority in Autism, autism diet, Family, Health, Parenting, special needs, Uncategorized.
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Seems everywhere you turn lately, you can find an article or a blurb about autism. How great is that?! My local newspaper, Newsday, is wonderful in its coverage.

If I had to guess, I’d estimate that autism awareness must be up over 2000% from where it was only five years ago. I am pretty sure autism actually was absent from the mainstream media back when ‘C’ was diagnosed in January, 2004…not that I just didn’t notice it because it hadn’t yet blown the doors off my life. Back then, the stats were 1:166. And in that short time we’re now at 1:150.  Will it get worse in 2009?

I’ve read a lot about autism: research, theories, diets, therapies…you name it. I’ve become what many people who know me consider to be an expert in the field. I am not an expert, but I do know a lot about diet and alternative therapies, and I am very willing to help others.  Because of that, I often get calls from someone who was referred by someone who was given my name from yet another person…like my own version of the Six Degrees of Separation of Kevin Bacon.

What I haven’t  read… until today… is how devastating autism is on a family’s finances.  Finally. Someone recognized the “unprecedented financial strain” on the families of the more than half a million children with autism in the United States.

The 2005-06 study included 40,000 children nationwide, with a broad range of chronic special needs health care issues, including autism as well as physical and mental illnesses. Of the 40,000 children in the survey, 2,088 had autism, which may make others think it wasn’t a large enough group to be reliably representative. Those of us living it know otherwise

But to highlight some points where the autistic kids were compared to non-autistic children with chronic health care needs, the study (appearing in December’s Pediatrics, lead author Michael Kogan) and summarized on page A26 of Newsday today, found that:

  • Parents of autistic children are three times more likely to have to quit their jobs/reduce their hours in order to care for their autistic children;
  • Parents of autistic children not only pay more for their children’s health care needs, but they spend more time either providing or arranging for those needs; and
  • Parents of autistic children are more likely to suffer financial problems.

Now, I am not suggesting that the parents suffering through raising a chronically ill nonautistic child are not as emotionally overwhelmed as the rest of us who have autistic kids…just so we’re clear on that one.  But I am wondering if the survey reflects these differences partly because, for many people, many of the therapies needed for their autistic children are not covered by insurance or provided by their school districts. (By “therapies” I mean anything from ABA, PT, OT, Sensory, Speech, and cutting edge/alternative items like MB12 shots or HBOT and the many, many nutritional supplements that autistic children on special diets require.) Many a family can…and has…gone bankrupt trying to provide these things for their autistic child.

I’ve even heard many people say they can’t afford to put their autistic child on a special diet because of the cost of the food and the supplements. And those that can, often can’t afford to put the whole family on it. Which means extra time (aka more exhaustion) for the mom cooking separate meals. Just to put it in perspective, a 5 pound bag of regular flour costs about a dollar or so and often goes on sale for much less.  Do you know what it costs to buy a single pound of almond flour in the health food store? $12.00! That’s $12.00 for a single pound vs. $1.50 for five pounds!  So, I buy in bulk through a mail order source and pay about $6.00/lb.  Wow, what a steal… And the price of the supplements ‘C’ takes…none of which is covered by insurance of course, exceeds $100/month.

Maybe if our health insurance covered more of these costs, the strain wouldn’t be so unbearable. Hell, I’d pay a higher premium if it meant any  of his expenses were covered. It’s just frustrating to pay so much for insurance which we rarely use (since we approach our health care holistically) and then to pay so much more out of pocket for those holistic therapies. It amazes me that most insurance companies will shell out for an endless supply of prescription drugs or the cost of an endoscopy/colonoscopy for these kids, but usually not for holistic/healing therapies like fish oil or vitamin supplements or HBOT.

We can’t afford sitters. So we can’t work traditional jobs that require staying til 5 pm. And you just know that you are going to get called to come to school for some reason or another more often that other moms…so you can’t just gamble that it won’t happen and take a 40 hour/week job. You need a level of flexibility that is almost impossible to find in the workplace.

And forget about going out as a couple!

But even if we could pay a sitter, how many of us are lucky enough to have someone we can really trust with our special needs kids?  That 15 year old neighbor girl would be fine for a typical kid, but imagine how many things an autistic kid could get into in the time it took her to text her BFF just once! OMG!  If the good folks at poison control know my  voice…and I am on ‘C’ like glue (except for my indulgent 30 second pee breaks which prompt him to well, um, drink sunscreen, maybe)… a regular sitter doesn’t stand a chance.  Paying a professional therapist to sit is a luxury reserved for those times when we absolutely have to go out without the kids… and the grandparents are going with us. (Curse those family weddings…)

Well, it’s high time ( wow, I sounded like my mother there…) people realized that we are under incredible financial strain. Contrary to what people may think, most of us don’t sit home because our husbands make a fortune. Many of us would love to work…or at least be willing to… so we could help out with the finances and have a chance to be around other adults.  But many of us don’t because we don’t have reliable childcare for our autistic kids…no one to get them from school if they’re hurt, stay home with them if they’re sick, or take them off the bus without worrying they’ll escape their grasp and run off. Or we don’t work because then who would do the eight thousand other things a special needs mom grapples with…like the extra cooking and shopping and planning of the double meals for special needs diets (and the dishes that go with that), or the extra laundry for the never-ending pee accidents, or the extra time it takes to do the homework with your special needs kid…and the extra attention you try to work in for your other kids, or…or…or…  

And because we spend so much time at home, we are lonely. We miss adult conversation.  The people who understand us best are the other moms going through the same grind, but they are just as overworked and have just as little time and energy and money to get together. So they are lonely too.

Funny how people are just recently worrying about money and talking about a recession.

My personal recession hit in January, 2004. I’ve already moved on to a full blown depression. Whether I’m talking economic or emotional, I’ll leave it to you to decide…

Anyone else feeling the pinch?  Has it caused you to cut back in autism-related or other areas? If you work outside the home, what do you do and how flexible is your boss? Any tips or suggestions to share?