Autism and Fear and Change

I have been watching as much of the news as I can take, about the recent mass shooting at a school and deaths of students at the hand of a former fellow student. I am so angry right now about so many things. So worried for my son.

Right now, I am reading about a lot of finger pointing. I am feeling second-hand anguish and rage. Who is to blame? The NRA, and their insane support of proliferation of gun use and consumption in this country. The politicians, who take their money for personal and political and let gun control bills and laws die in committee, along with out children and students in our schools. The schools, who rubber stamped troubled kids out of their system when they became a disturbance -- why are schools expected to be the experts on this, by the way? The FBI, for not following up tips that he was ready to explode. About the white supremacists, who trained this latest killer and went on record to say they did, although surprisingly that is getting little attention from where I am sitting.

You know what I am also reading about? Again? Autism. Autistic male teen, shunned by peers, anti-social, living with mom as parents are divorced. They could almost be describing my son. Almost.

James right now is happy and still focused on games and media from his childhood years. While not living with his dad, he does get to see him and talks with him almost every night. His classmates still greet him with shouts and friendly waves. I could list all the ways my sweet sunny kid is different from the killers at Sandy Hook and MSDHS. It won't help the fear that colours perception.

Fear that can lead police and other first responders to take my son down, or make school administrators look the other way and pass him out of their systems without getting into the messy and expensive question of how to help troubled kids on the spectrum. Fears that could start making his classmates look at him funny, and start to wonder if he will ever become someone like they are reading about in the news.

Also, we have puberty on the horizon. I know something of what is going to happen once those hormones hit hard. Already at 13, James is taller than my 5' 7". I am doing my best to do right by him, so he can be as well-rounded an independent as possible. Plus, I know I will make mistakes. It feels a little bit like juggling nitroglycerine. Every day.

James is part of a wave that is about to swamp the end of the public schools and services section. Adult communities and our world at large - they are a little better equipped to deal with differently abled, but where is their place? What and who are their supports? Our schools have been criminally underfunded, under-trained, and under-staffed, even before Betsy Vos came on the scene and started trying to dismantle rights to access and services for disabled and differently abled kids. The regional centers have been under financial attack at the same time. Here in California, Jerry Brown has shut down centers for disabled adults with no replacement available.

I feel my anger, building over time at all the budget cuts, trying to be swept under the rug, and isolation from socialization ... growing as my government takes away health care, mental health services, and punishes me for being a single mom thinks that "thoughts and prayers" are going to do it.

Troubled kids, teens, and adults cannot be made invisible. Closing programs to help and support them to save money or putting them off into a funded program that is not equipped to handle them or out into the 21+ population at large and hope for the best? Only works so far.

I am furious and what is being done to all our kids. To my kid. Politicians, talking heads, and social media noisemakers: take "heart broken", "thoughts", and "prayers" and STUFF it back down your throats. We're not here to bump up your polls or ratings.

I call elected politicians in DC (have yet to get through to one - more and more GOP office are letting calls go to voice mail, whose message boxes are full). I participate in protests (it does help). I write to elected reps. I show up to IEP meetings, and call them when needed to advocate for my kids; I take notes and ask for services. I work with the doctors to keep my kids healthy mentally and physically. I see some great people and organizations out there. I participate in research studies - how else will we learn more about causes and things that can help? I have talked with community leaders about needs and services.

It really burns me: all the finger pointing and "not my problem/why should I pay for" mentality and lip service out there.

We are all in this together. Act like it.

I pay my taxes. I have worked almost constantly since I was 16. I vote - every danged election. And I am teaching my kids to do the same. And my biggest hope is that change is coming, to wipe out organizations like the NRA, KKK, Tea Party and the current status quo. Because the job you're doing just is not good enough. In fact, it's killing us. And we are realizing we don't have to keep sitting down and taking it.

Walking and Raising

Yes, this is late going up but yes, we will be walking in the 2013 Walk Now for Autism Speaks event this coming Saturday in Windsor, on the Town Green.

Yes, the numbers have risen again over the year: CDC now pegs the number of diagnosed children (ages 6-17) as 1:50 children and 1:31 boys. Last year they were reporting 1:88 and 1:54, respectively (for 8 year-olds). A diagnosis is made for some form of Autism every 11 minutes, instead of every 15 minutes.

Yes, we are making progress in understanding more about Autism -- its causes and resources for those affected by it.

Yes, there is more that needs to be done.

Yes, you can help:

Yes, you can come walk too! This will be our 4th year walking and every one has been a blast.
 * 2012
 * 2011
 * 2010

Fear and Loathing Die Hard

After yesterday's post about Sunday's experience with discrimination during a school outing, I thought about how lucky we have been, for the most part. James is engaging and has been working with tight teams at school and in an accepting community. Our town is about to host its 3rd annual Walk Now for Autism Speaks fundraising event.

There are times when I get looks and overhear comments about about need for discipline/out of control behaviour.  Friends and family members make assumptions that sometimes hurt, but hey -- c'est la vie, eh? We are so much more supported by those around us than not.

That's why this article took the day down for me: Google Eliminates "Die" Search Suggestion for Autism. I know, from reading online comments on news stories, these attitudes are out there on a wide variety of subjects.

But really? All the screen shots below are from this afternoon on my own laptop. I started the search, and Google added what people commonly go for (I assume). How sad:

   

This one didn't look so bad at first, but on second reading, Google search took my phrase "people with autism should ..." and turned it into some really personal questions:

This pretty much captures the issue for me; for a very basic query to get more information about autism, the very first unpaid search result is an odd dictionary entry that looks quite different from the answer provided by a national organization that actually deals with autism and is pushing for more research and answers:

We are all so much more, those with autism, their friends and loved ones, and our world.  So thanks, Google, for taking a stand against hate speech.

I can only hope that parents, professionals, and those on the spectrum can help do their part by heeding the advice of Scoop Nisker. Go make those news stories good ones that show the people we love. Go, Flash Bloggers!

Why? Because We Are All Community

This is brief, but in support of Sunday, her family, and the entire busload of school kids who were dished a whole lotta hatin' at their recent trip to their local Dollar Store.

Please read Sunday's story, in her own words, and support her by spreading information and compassion about those who off the beaten path. The best way to fight this meaness is helping those whose lives look different from ours understand how we are all in this together, regardless of our unique and special needs.

Another "I Don't Get It" Moment

Background: James' big sister had her 10th birthday party yesterday here at our house. This alone is worth a future blog post.

James was utterly delighted. He loves company and kids, and he's gotten to know these particular friends, and they him. It was a very comfortable, relaxed event for all. James wanted to stay with the rest of the kids, watching and reveling in all the action. We kept checking in and everyone seemed fine with this, so we just let them all be.

There were visits to the new birthday kitten (now a stately 4 months old). Several spirited (and loud) games of Super Monkey Ball on the very cool in-home entertainment system their dad rigged for them up out of thrift store (and dump) finds (which could be it's own cool blog right there). Pizza was served during a movie -- Brave, by request of the birthday girl.

About half way through the movie, James started coming up to me, saying "Oh Mommy, I'm so glad you're back!" before hugging me for longer than usual. Took me a bit to connect Queen Eleanor being turned into a bear and me.

You see, about two weeks back, I flew out to New Mexico to pick up and drive back a used car to replace our totaled van. This took about three days -- the first time James has had to do without me since, well that one night his grandmother stayed with both kids so my husband and I could spend a night at a local B&B. That was back in 2007, I think.

Now, during these three days, James was fine. No anxiety, repetitive questions about where I was or when I'd be back and his sleeping at night was fine. I don't know why James connected the dots as he did between my trip and the story of Brave. I do know it is nice to be back home, and that despite James being fine, I was missed.

Follow Up: Support ... I Think

Catching up a bit here from a big shakeup or three in our family cosmos. Received this letter in the mail and wanted to share:

My first response was elation and a small frisson of delight. My first letter from Congress regarding an issue I'd detailed in an email to my representative! I know it's a form letter, but still.

Recently, I was able to read through it with greater concentration, and my reaction became a bit more ... layered. First, the second paragraph provoked an ironic smile. Yes, please tell me more about what autism is. Okay, no don't. I live with it and I believe that you, or at least your staff, has done its homework (at least until the fourth paragraph).

I had trouble understanding the next paragraph. I may have gotten a high grade in Civics and History back in, um, the 80s, but that doesn't mean that today I understand our legislative process (shame). Hello, Google -- let's take a few random legislative tours.

In particular, I was struck by the lack of detail in that third paragraph's last sentence (especially after the pithy summaries above) -- what does it really mean, when a Representative "supports" a bill? So I Googled H.R. 2005, and how Mike Thompson voted on this bill. Top results for me involved co-sponsoring of this bill. I learned one thing: Mike Thompson was not a co-sponsor. Query, what is a co-sponsor? Answer: link.

Okay, so a not being a co-sponsor does not equal non-support. Again, what did Rep. Thompson do to  "support" this bill?

I searched for his vote and found nothing. Curious. So I researched the approval process for this bill, and refreshed my memory on the journey of a bill. Thanks, Project Vote Smart! I verified that, per Rep. Thompson's letter, the bill passed in the House on September 20, 2011. A little more digging found that the reason I could not find a voting record is because the bill passed in the House by a voice vote.

Was Rep. Thompson one of those voices? I sure hope so, but he didn't specify that.

For the curious, here's an interesting look at how the bill was distributed to the House that September 20th (link to PDF file; bottom of page 10, you're welcome). And it you want to see the official Law (unsigned, but veritas in PDF format)? Here ya go!

I was not happy to see see autism lumped into "debilitating conditions and diseases" in paragraph four. While some sensitivity and physical issues related to autism may be debilitating, autism is definitely NOT a disease. You can't catch it from someone else. Bad form letter; no biscuit.

Last year I advocated that sb 946 be renewed to keep funding in place at our state's level for autism research and services. I sincerely appreciate Rep. Thompson's follow-through to report that H.R. 2005 was signed into law by President Obama (yay!) and the exact date of the signing. In an election year, it's important to remind constituents of how their interests have been represented.

A little more clarity on the "support" given to H.R. 2005 would have been excellent and I sincerely hope Rep. Thompson and his staff are aware that autism is not a disease. I am glad to see that one of my Congressional Representatives is aware that autism is a big issue to lots of families, and he's willing to go on record as a supporter of research and services to help those affected with autism.

Layers, I tell you -- but with a hopeful feeling, overall.

2012 Autism Speaks Walk: Thank You!

For the third year in a row, we were proud to show up and walk to raise money and awareness for Autism Speaks. Turn out was great and the weather was the best we'd had all week. We came to the Town Green at 10 (free parking, music, and a great resources/vendors -- already off to a good start) and stayed until 12:30, taking snack breaks at the picnic tables and checking in to the library for a sensory break (I also picked up information for growing vegetables from the Master Gardeners' talk).

We were exhausted by the afternoon, but so glad we went. This is such an important event for us and we're happy to be doing our part to find out more about autism and help those with it to live as healthy and actively as possible.

It also felt good to have this walk in our community, and see both the walk and the Town Green mesh so well. I do believe in the importance of having community support to help our kids -- all our kids- be as successful as possible. It also felt good to see all these families on the spectrum in turn supporting my home town by eating at the restaurants we love, staying in the local hotels, falling in love with the book store, and watching their kids on the playground. When there was an announcement that the local indie cafe was donating 10% of all sales from the day to the walkathon there was a big cheer, and I saw at least one group immediately head over to help boost business and fundraising.

View from playground hill, looking at the Green and Resource Fair

Playground

Walk route, as it passes the jumpy house

First lap!

Autism Speaks provides information and tools to parents and others who work with children on the Autism Spectrum. Autism Speaks provides a Voice to many who do not have one of their own. This organization keeps abreast of updates in research and politics, helping parents become better advocates for their children. Autism Speaks funds research to investigate causes of autism.

We walk because:

Last year, that sign read "every 20 minutes"

• No one knows what causes autism.
• The numbers of children affected keep growing; current CDC numbers are 1 in 88 children; 1 in 54 boys. Some areas have even higher rates of autism.
• People still don't know about autism. I personally have been asked about autism (and resources regarding autism) over the past 2 months by people who include staff at our local schools, my son's pediatrician in our HMO, and family members.
• Our son has Autistic Spectrum Disorder (ASD). We want the best for him and hope that some day he will be able to live an independent life of his own choosing.

To all of you who helped us raise money for this walk, thank you so very much! We reached our personal fundraising goal because of you. At the walk, we were told that every dollar raised here turns into $10 worth of research, through matching grants and Autism Speaks. This means so much to us -- doing something positive to find answers and solutions for those we love.

Autism Numbers Up - Why You Should Care

I've been catching the stories online about the latest CDC numbers for autism: 1 in 88 children; 1 in 54 boys. In some regions of the United States, the numbers are even more alarming, such as 1 in 47 children in Utah. Many people seem to think that better detection is responsible for a big portion of these higher numbers.

I agree that better diagnosis and detection are boosting the numbers, but that does not address the initial cause of autism. It seems logical to me that the growth in the number of children diagnosed with autism would not be so steadily climbing without some other underlying causes, such as environmental factors or genetic factors.

My own personal belief is that there is not one answer, but several, and that it may take one cause or a combination of them to cause autism. I also think that modern living and its byproducts are somehow causing more frequent occurrences of autism.

These are guesses, based on personal observation and reflection. What we all need is scientific research to track down causes and patterns. I'd love for parents to be partners in this, because many of us have been living with autism longer than researchers have studied it.

Think about how many children are on a playground, a classroom, a school, in your family. Think about schools being required to provide services while their budgets are slashed and training is reduced. Think 10 years in the future, if the numbers continue to increase. How many of these children will be autistic? Think of what happens when autistic children turn 18, and are largely cut off from services and resources. How well prepared will they be? We as a society need to care NOW. Parents need more information, and better resources to prepare their children for as full and independent a life as possible.

We need better supports and services, because the best practice right now to address autism is early detection and start of therapies and treatments. Not only are they effective, but they also reduce the need for services later. I don't think that parents who have navigated bureaucratic processes want to continue it for a lifetime. I think it's pretty safe to say we's like our kids to need as few therapies and interventions as possible. Also, trained parents can be an awesome component in their child's treatment.

We the parents need hope as we grapple with rising inflation, foreclosures, job losses, marital stress, social isolation, cuts to schools and regional center programs, and denial of services by our health care coverage. Not to mention bickering politicians in an election year.

What can we as parents do?

• Continue to advocate for services for ourselves and children. 
• Network for successful therapies and resources. 
• Write and call our elected official and continue to let them know we are a growing segment of their constituency that has needs and wants to one day be self-supporting and independent.
• Raise awareness by speaking up and out about autism and what it mans to you and your family.
• Support each other with in-person and online support groups and activities.
• Love our families and laugh as much as possible; smiling is good too.
• Set goals and learn from what does or does not work; allow space for growth and change.
• Don't be afraid to tell providers and educators what you need for yourself and your children. I have been amazed how powerful a clear statement of needs, reinforced with polite insistence, can be.

If you are not a parent of a child on the spectrum, and have been reading the headlines and wondering about it, please consider becoming more informed and helping. There is certainly a need for it! 

• If you know someone who has a family member who is autistic, talk with them about it. Listen to them. Think about what you might be able to do and then act as you can.
• Make a contribution to an organization that helps with autism. Autism Speaks is a very good voice for the autism community, and raises money for more research.
• Support local non-profits, who are not only front-line providers, but have had their funding majorly slashed. If you look at the right column of this blog, you sill see the non-profits who help us. Here is a more generic list: Regional Centers, Easter Seals, Cerebral Palsy, Scottish Rite, and your local public schools. 
• For school-aged children, the two biggest providers of services are the Regional Centers and the public schools system, and their budgets have been decimated by state budget cuts and are the first to be targeted every year for subsequent cuts. They are hamstrung, even as demand for services rise. They need your help! Support for services sooner means a greatly decreased need for services later.
• Support can mean donations of money, time, or materials. You can call or email to find out what these organizations need. 
• Volunteering can mean so much. It looks like giving your friend/family member a break - even 20 minutes is great for a run to the store, a real shower, or a power nap. Non-profits need volunteers to staff and run fundraising booths at events. I personally have volunteered my services to create websites, brochures, and graphics, as well as edit marketing materials and make presentations to groups and committees.

Day Five of Not So Great

Twenty-four hours, two Advice RN calls, and three phone MD consults later ...

James is still in pain, moaning, and yammying. He is drinking water, walking, and proving he's hydrated in the bathroom. He won't eat, however.

So I am trying to keep him hydrated and on the anti-nausea meds (we run out tomorrow).

Besides being upset that my son has been in so much pain for four days, I am getting frustrated with the tag team of medical records. His new pediatrician called today to check-in, which I appreciate. She then questioned his diagnosis of Autism, quizzing me as to who did the diagnosis and who was tracking his progress?

What. in. the. frickin'. who?

It's almost like being asked to provide a certificate that proves I'm the mom, seven years after the fact.

On the one hand, I am trying to see this as a doctor who is doing her homework before seeing a challenging patient the next day, as well as an opportunity to educate a whole lot of medical personnel about Autism, and working with patients and families on the spectrum. I do a lot of counting on this hand.

On the other hand, I want to yell: "What, just because one of the HMO docs didn't diagnose him as Autistic I will constantly have to remind you of the fact that I asked to get a second opinion and a whole panel of professionals (twice, if you count the MIND Institute) told me: 'yes, your son is Autistic and has some severe developmental delays' ?!?!"

I am sure that's not how it was meant but boy howdy, that's how it sounded.

P.S.: The tracking his progress is funny bureaucratic nightmare kind of way, because they have denied  requests for services that would bring them onboard James' team and allow them to both facilitate and track his progress.

Autism Decorates!

Our town started a new tradition last year -- the Charlie Brown Christmas Tree Grove. It's a fundraiser to benefit the District's Schools and music programs. We were invited to come over and help decorate the tree for Autism Speaks (North Bay).

Wow! When we got to the Town Green, it seemed as if half the population was there. It was such an upbeat, energetic crowd of people happily decorating. I heard they have 150 trees this year. It's certainly become a big hit.

I was proud of James. He did a great job of talking with people and hanging ornaments. There was an unfortunate interlude where he ran off with someone's scissors and didn't want to come back, but he finally responded when faced with the count of "1-2 ....."

We enjoyed wandering around, checking out the other trees. Here are a couple of our favourites:

We enjoyed gelato at Powell's after, sitting on an outside bench with friends. I let the kids run across the Green to climb, slide, and jump at the playground on our way back to the car.

Simple pleasures. Such a good time.

Next April 14th. We will be walking again to raise awareness, research funds, and support each other. Hope to see you there!

This is What It Looks Like

I and other parents talk quite a bit about how how things that are straightforward for other parents often aren't for us, and about how that makes us feel isolated and saps our energy.

 This is what it looks like -- waiting 15 minutes as the entire school parades around a 1/4-mile circle to see your child in the Halloween Costume Parade:

... only to realize your child is not there. Other full-inclusion kids are, but yours isn't.

I tried not to feel hurt and reminded myself it was time for his speech session, which is very important for him. Still, it was a sinking feeling.

This is your son when you try to help out in class. He's way in the back of circle time, freaking out and crying, because Mommy only comes for drop-offs and pickups and now she's Right Here in the classroom. What The HECK Is Going On?

I expected this and remained calm. It's hard, sometimes. Especially as I've helped out in classrooms for my daughter and never got this reaction.

Lest this turn into a pity party for one, this is what it looks like, when your child on the spectrum adjusts to having a parent pop up unexpectedly and join the school day.

... because his teacher and aide also remain calm and welcome all parents to help out in the classroom. Here is James, doing the craft project that I was running during their Halloween party. He made a treat bag by writing his name one it and then stamping Halloween designs on the front and back.


And this is what full inclusion can look like:

Two guys sharing free time together. Having fun.

These are the times that keep me going.

Subconcious Memo

I had a weird dream last night. We suddenly had 3 children; same 2 plus another boy. He was younger than James, wild black hair, and always laughing and tearing about. You know how kooky dreams can be. I spent what felt like hours, wondering how we could be so stupid as to think we could handle another child, how I could keep forgetting about him, and where he was going to sleep and sit at the dinner table.

Just for fun, in the dream my husband phoned me to say that the music teacher (from our daughter's piano lessons, which she has refused to continue) got all excited because he whipped through 65 pages in the music book in one sitting and is a bona fide child prodigy!

I woke up very confused and then sighed with relief when I realized it was only real in the dream. Then I thought about it. Why did I have this dream?

Not long after, James woke up. As usual, he began his day with thumping the bed as he got out, announcing loudly "I want to use the bathroom!" After his pilgrimage, I had him play quietly in his room for longer than most mornings. It is Sunday, after all.

As I was slowly getting coffee ready and making breakfast, I heard James asking me for help. It was to open the package for a Mach 5 car he'd received almost a year ago. He thanked me, finished removing the car from the plastic, and began to play with it. Not so unusual for a 6 year-old, but it's a new step for James, who loves looking at things, but rarely plays with them.

This made me remember that his teachers and family have all noticed that James is starting conversations, and that talking with him involves less questions and more exchanges. That James is starting to draw pictures, rather than shapes, words, and random lines. Trying to engage others in play. Able to follow directions and make comments while he was staying on-task.

So now I am thinking that the real boy who's always been inside James is now coming out to play. And that it's so new that I dreamed about him as another child.

James, 2008

James, 2011

Autism Families: Becoming Represented

Hooray for the members of Congress and Senate for passing the Combating Autism Reauthorization Act (CARA) of 2011 by unanimous consent. Waiting to hear that President Obama has signed it into law. We need more research so we can find better treatments for our loved ones and future generations of children and people on the Autism Spectrum.

More support for research might also give us answers for how we might be able to prevent Autism from occurring among our children in such devastating numbers (currently 1 in 110 children; 1 in 70 boys).

As a long-term resident of California, I have been urging Governess Brown to sign SB 946. Thank you, California Senate President Darrell Steinberg for making this a serious priority.

No Brainer

Um ... ya think?

MSNBC has run an article that basically says mothers get more stressed when their children have behavioural disorders. They focus on ADHD, but come on -- your child acts up and all's serene? Not likely, yeah duh.

At least, that was my first thought. Then I thought that hey, maybe someone will see this and possibly take a second look at parents with kids on the spectrum. Because it's all about us, especially at the end of a 14-hour day that saw 130-miles of driving (at increased gas prices), painful copays that further eat at our reduced family income, several hours of appointments with therapists that will give us good insight but sound iffy re: helping our son get more covered services, and repeated meltdowns of both children for assorted reasons.

Oh, and James deciding at the beach, about an hour and a half before his appointments, that he was just going to ignore me and my loud voice and lie down on the wet sand and let the Bay waves wash right over him in his street clothes? Then going boneless when I attempted to physically remove him from the surf? Yeah, I rate that right up there with overly long nightmares about missing trains and running to deliver lost luggage. While my shoes fall off.

That will teach me to not pack a complete backup set of clothes. Ah well, maybe the sandy undies will make him think next time. Yeah, not really counting on that one either.

Anywho, for all you people who've come across this story, there are many parallels, are there not, in parenting and emotional experiences for parents of kids with Autistic Disorder and ADHD? We too operate in "constant vigilance, a high level of energy" when dealing with our children, whether or not they are with us physically. And oh so definitely yes, the CA state and federal budget butcherings to schools and Regional Centers have totally ratcheted up our emotional stress rollercoasters. We are at Defcon 2 and ready to nudge over into Tortured Mode.

Author Dudette, you hesitate to voice an opinion because there are no offical studies done yet on the effects of of state budget cuts on special needs children? Here's all you need: "The effect? I'll tell you the effect! It's pissing me off!" (Who knew that Ghostbusters had so much wisdom?)

Let's see: Less money because I have to quit my job to manage getting services for children + rise in prices + huge cuts in budgets to Regional Center + services being dumped on schools to provide + schools getting less money, their funds raided, and non-repayment of robbed funds + fewer services for our child all way around + way burned out husband + rising costs everywhere + financial institutions getting bailed out for bad behaviour + grandstanding politicians = really pissed off parents who feel like they've been hung out to dry after being as responsible as possible.

I know we're all more stressed these days. I know that not only ADHD and ASD parents are stressing out more and more. Which brings me to this question: What was this article really about?

It almost sounds to me like:
"Oh, parents of kids with special needs are more stressed out that parents of regular needs kids. What a concept. But we'll wait for an official study before we really care."

If this is actually the case, here I am, waving my arms around and yelling:
"Yes! YES, YES, we're REALLY STRESSED already, OK?! Skip the sodding test and help kick some political entropy to lessen the mess. Studying our misery won't help us or our kids as much as sounding out a rally call for change in the way monies are appropriated and services managed in these tough times. Parents and children need some relief and access to services and therapies. If we shut our eyes to this now, it's going to come back and haunt us all years down the road when we have a sizeable percentage of the population who is more dependent for their support because there was a lack of services up front that could have greatly lessened the effects of the disabilities."

Still Learning Our ABAs

Autism-related behaviours manifest differently with each person. Our experience with James is special in that he likes and seeks out others, he is normally sunny, and is empathetic toward others. Sometimes I realize how focused I am on James, and how much I am not paying attention to the bigger picture if Autism, it's issues and research.

For example, this morning I was reading an article regarding treatments for those affected by Autism Spectrum Disorder (ASD), which is James' official diagnosis. There were many references to ABA.

Huh?

Okay, I'm officially clueless. I had to Google it. ABA stands for Applied Behaviour Analysis and there are pages and pages out there on the internet that cover what this means, what's hot, and evidence-based reports. The Bright Tots website is what I was reading this morning.

Once I got going, I realized I did know what this was, I just wasn't used to thinking about it as "ABA". In preschool, his teacher and SHAPE assistants worked with us to help James learn to eat and dress by himself, as well as cleaning up after himself. It was key in getting him engaged with successful potty training (although it took several attempts to find the correct motivating behaviour). Instead of ABAs, we talked about self-care goals, targeted social interactions, delved into breaking tasks down into small steps & social stories, and strategized ways to model correct speech & language.

Now in kindergarten, his team and family continue to look at ways to keep James engaged in his class routine, improve his social & language interactions, and encourage age-appropriate behaviours. So I feel better that I haven't totally missed out on ABA for James.

What I still feel I need to learn about ABA, though, is how else it might be able to help James. Where we can find these services. How we can pay for them. Because last time I looked, they were not covered by health insurance in California. Because I agree 220% with Autism Speaks in the part of their 2009 document "Arguments in Support of Private Insurance Coverage of Autism-Related Services", which states:

Argument 7: By improving outcomes for children with autism, mandated private insurance coverage will decrease the lifetime costs of treating and providing services and will actually result in an overall cost savings in the long-run.

Incidentally, I think the government should be seriously looking at this as well and see programs that support ABA-related services as a key investment in our future. We need to keep state and federally funded programs intact as much as possible, because for families like us they are just about our only options.

James currently receives the bulk of his services from public schools and the North Bay Regional Center. Without this assistance, we'd be hurting. And 10-20 years down the road, James might be even MORE dependent on government-related services, had we not had the help to get him to manage his own self care and jump-started his learning and speech. Along with the other 1 in 100 children on the spectrum.

Fundraising With the Monkey

We are still trying to raise money to help keep the CATS Program going. Tonight was a fundraiser at a local business, the Funky Monkey. We met up with some other families and enjoyed pizza, chicken strips, and socializing. We chewed the fat on therapists, IEPs, and plans for the coming school year. At one point, all the kids were in the birthday room, watching SpongeBob Square Pants.

Of course, there are also games, with tokens. James just focused on mastering the sentence "I want more mo-nies, pease." A couple of times I prompted him to say tokens, but the boy knows that monies is monies, pure and simple.

James actually did play for a bit with myself, his sister, and watch a couple of other kids at play. But his real fascination is:

Oh. Yeah!

Tackle It Tuesday: Pulling Funding Out of a Hat

Here in California, news services have been relentlessly passing along the bad news most parents are having to deal with: lack of funds means cuts in services. Class sizes in public schools are increasing again, because the district is cutting teachers (not administrators, but the front line teachers). Special needs kids get even more cuts, because they have more needs. I think this is crazy and short-sighted.


Parents know that sooner or later The System is going to have to deal with their kids with special needs. For years we have been told by professionals that the sooner our son's needs were assessed and addressed, the more progress he would make toward a more mainstream existence and that he would tend to have fewer problems later in life.

Sure the politicians get closer to a less out of-whack-budget by denying services to my son now, as well as hundreds of thousand others. What is their genius plan for dealing with all the needs that balloon out of control because there was no help up front, early on, when these people could have been helped to lead more independent, happy lives? Well, they have no plan, because they'll be out of there and on to greener pastures. Parents and middle-class America (and Californians) will be left holding the bag.

Three years ago I would have sucked it up, given up things I'd treated myself to, like extra social events, new shoes, and eating out -- then used my paycheck to get my son what he needs. I can't do that now because I left my job to coordinate care and services for my son, as well as work with him as much as I can. I've already given up those extras. Our family is down one paycheck and took a few bumps down in healthcare (which, thankfully, we still have). And there are speech and P/T services that are needed by James yet are not covered by medical or school services. Our wonderful North Bay Regional Center's budget has been slashed, and therefore, James is receiving less funding and services.

I can't be the governor or have the budget folks listen to my emails, but I can try help find some funding for local programs that still soldier on, doing it for the kids. This Spring, James and I walked and raised funds for Autism Speaks. Thank you everyone for helping us do that! Next up is raising more funds for the CATS Program. Actually, we've has a successful small fundraiser at Powell's, our local candy store. Now I am looking into working with a local kids' place to have a money-raising play date.

To kick this off, I talked with the owner of said kids' place, who was wonderfully warm and sympathetic. Next, I kicked the idea around with several parents, who liked the idea. Next up I will go back to the kids' place owner and get some possible dates about 3-4 weeks down the road. Another parent is promising to email me a list of other parents who'd like to participate. I'll offer up some dates and see which one gets the best response, then move forward to booking the date and getting the word out there.

A lot of work? You bet. Reason why? The best possible:

This may not be housework, but it's sure part of my: