Autism Resources at the Walk

One of the great things about the Walk Now for Autism Speaks events is that they have vendors and organizations at tables to create a Resource Fair. These are services that are available now in our area, and I always find out something or someone new.

This year I found some older friends, like the CATS Program, United Cerebral Palsy of the North Bay,  and Anova.  James still loves a hug and high five from Toys-R-Us' Geoffrey the Giraffe.

Photo from the official Walk Now for Autism Speaks blog

 I also found out there's a summer session for a local horse therapy ranch, Equi-Ed.

UCSF is involved with some new Research programs that investigate possible treatments to help those on the autism spectrum and find out more about this disorder.

It was great to see representatives from a gymnastic group (Rohnert Park Gymnastics) and a national martial arts organization (ATA), as well as hear them talk about the activities and benefits they have to offer to kids on the spectrum.

I hope that there are more groups there for next year's event. New resources really help us out!

Not Surprised

I read an NPR news report about a study in South Korea that found the incidence of Autism in school children was significantly higher than anticipated.

Am I surprised? No. First, I have become used to looking at things through Autism glasses. Second, when we were filling out questionnaires for James during his diagnostic period, I noticed that there were many questions that I marked "no" for my son, but "yes" for my daughter. She had started to walk and talk by her first birthday, can do multiplication, addition, and subtraction correctly in her head, makes up stories, reads at least a grade level ahead, and asks complex questions about art, science, and life. She is very loving and affectionate and does not act out in school. She plays well with others.

She is also extremely sensitive. I could tell you tales about years of crying fits because socks have "strings" that hurt her so much she would refuse to go to school in the mornings. Tags on clothes? Ditto. Thank goodness for seamless socks and tagless shirts. She's started 2nd grade and just a couple months ago I got her to wear pants with zips and a snap. First time ever for that one.

Noises and smells seemed to overpower her, although she handles them much more "normally" now. She is still a picky eater. It took 3 years of swim lessons before she got her head wet. That means from ages 3-7, washing her hair was akin to waterboarding, in her experience.

People have asked if I had considered getting her tested for being on the spectrum. My answer so far is no, because I do not see what services she could get that could help her. This might change, but for right now, we're good. Enough.

It makes me wonder how many other children are out there, with special needs, who are undiagnosed, yet managing to cope so far on their own ...

"Best Thing"? Really?

This news snipped caught my eye "Brain scan 'best thing so far' in detecting Autism." It seemed so cavalier that I clicked to the article.

I do not agree. At most, it's an interesting future diagnostic tool. I see it as more of a "best thing" for the people who perform the scans and conduct research than for the patient.

When James was first diagnosed, his pediatrician said "He can't be autistic. He looks you in the eye." I had to insist that he call in a referral to our Regional Center. They sent out a wonderful woman, who talked with his father and I, and tried engaging James in a series of activities. She listened; she handed us tissue when we teared up. She looked at James and took lots of notes. And she wrote up orders for O/T, Speech & Language therapy, and home visits for a developmental specialist, who later became a personal friend, mentor, and support.

Pardon me for snorting and being skeptical that a brain scan is better than anything that woman and those groups of nonprofits did and continue to do for our son.

Brain scans CAN: can help target patterns of activity in an individual's brain; help provide scientific evidence of aberrations in brain function; be costly and freak out the patients.

Brain scans do NOT: help a person interact with others; provide behavioral redirection; cure Autism; show which therapies might be most beneficial to an individual; open doors for therapies that will help the individual and their families to get the help and services they need.

So in my opinion, right now these new brain scans are really not the "best thing so far." So far the professional people who care and work with our kids are the best things. Ever.

Resonance

I read this article about autism and the MIND Institute in the NYT and it just ... resonated.

The non-responsiveness. The staring. The trips to UC Davis. Providing samples. Having to make hard choices, like leaving my job. Looking at our autistic child's sibling with a new (and sometimes heart-heavy) perspective. Lack of answers. Curveballs. Making it up as we go along. Trying all the therapies that seem helpful. Progress. Being grateful for assistance. Realigning expectations of the future ... for our family.

I wish this family all the best. They are a lot like us.

Taking CHARGE

Talking to the person from the UCD MIND Institute has got me thinking again about our participation in the CHARGE Study. When James was formally diagnosed in 2007, our case worker from the Regional Center mentioned the study and suggested that we call to see about participating in the program.


Back then, we had no idea what we were heading into (and a good thing too, or I'd have been tempted to wave a white flag and lie down for 10 years). We were concerned, upset, and wanted *answers.* Now, damnit! What do you mean, "we don't know?" Why not?

I called, got us started, worried about how I was going to coordinate these visits to UC Davis (3 hours, round trip) with my transitioning back to work from Family Medical Leave (FML). My hiring and working supervisor had left the company, the department head was pulling everyone back to their cubicles (I'd been largely telecommuting and meeting with clients down south), and ... well, wanted to see a different ROI, IMO.

Our team was losing people. It was not pretty and I heard a lot of sad stories while I was out on leave. My stomach was in perpetual knots and I felt like there was a large target on the back of my head.

It basically came down to this: my career, or my kids. It was tough for me (for a whole bunch of personal reasons), but I chose my kids. I loved what I had been doing. LOVED it. I'd worked darned hard to get where I was. It had been a personal battle against depression and other things to find something I really felt good about doing on the job and doing it. Very well too, if I say so myself.

But ... I did do it. I had my hurrahs and laurels and victory laps around the field. Now our kids needed me. Our family needed a stay-at-home parent. My husband and I talked it over. Oh I cried; we let go of some things. My husband signed himself up for a brute of a horribly long commute (1.25 hours each way if it's good & over 3 hours each way if it's bad); luckily, he also has a wonderful job, supervisor, department, and coworkers.

Then we went out to do the CHARGE Study. The weather was foul the months we had to make our trips. It messed up James' naps. I felt like crying some more when I saw my beautiful, sunny boy unable to follow and do some of the simplest tasks that my daughter could have done at a much younger age. James had his first blood draw. I think I still have some hearing loss from that session, as I held him in my lap when they did it.

But it did something else. It made me feel less helpless. I got to get out and talk with other people. People who had seen and worked with children with autism. I started feeling less alone. When I started feeling scared about what was going to happen, I could balance the not knowing with the assurance that at least we were trying things. We were helping put the target on autism, not the kids who are on the spectrum.

I had been feeling really guilty about being an older parent and possibly having done something wrong during my pregnancy with James. Looking around my while participating in the CHARGE Study made me feel a little better. There were younger (some much younger) moms in the same boat as I. We had a lot of company.

It now looks as though the study is recommending more autism research in the environmental arena. This is significant. What are we doing to our kids? Let's find out and STOP it!

Some random other lines of thought: I have heard some people who want a cure for autism. All I can truly speak from is my experience and own limited knowledge, and they lead me to think that the best cure is to stop it from happening before it begins. I truly believe that looking at where we live, things we wear, and what we eat is our best bet to finding answers and preventing many children from being born autistic.


We don't just grow in a vacuum, everything affects us. I think our heady discoveries in the last century or so have led us to be short-sighted and go oooh and ahhhh over things like plastics, electronics, and man-made food additives that prolong shelf-life and betters a company's bottom line. It's time to pull focus and see what these things are doing to us, in addition to what they can do for us (and business).

I have read other parents swear by changes in diet bringing about radical improvements in their child's abilities/personalities. I totally believe this happens. I also see that every child is different, and this is as true for the children on the spectrum as it is for those not on it. There is no "one size/answer fits all."

There is a meme going around on FaceBook that really strikes a chord: "My wish for 2010 is that people will understand that children with disabilities do not have a disease; children with disabilities are not looking for a cure but ACCEPTANCE!" I agree with this 100% because I see this in my son every day.



So my thought for the day is take CHARGE! Look up the website. Google some information. Cry in your coffee (or beverage of choice). Then get out and fight! For our kids. For their future.

1 in 100

That's the new government estimate of children in the US affected by autism. (Link)

One in one hundred. And that's with the people who answer phones and talk with survey takers. Will we ever know the true number?

I am sometimes haunted by the feeling that there is a very real cause that triggers this disorder. I start to wonder what I did that made my baby susceptible to becoming the way he did.

My head knows that unless I am on board with a research team, spending time on this is pretty much a waste of time. My head knows that the best use of my efforts are to marshal a good plan, a series of ever-changing plans, for James. Plans that can help him lead a healthy and happy life.

My heart still aches, though.

Ahead of a Storm

I was catching up a friend on the kids and summer so far. Isn't it funny how writing a letter can put things into perspective for you?

I was gushing about the progress both kids have made over the past few months. That was fun, because this is a cheering section kind of friend. You know, the one that cheers you on when the rest of the world thinks you're nuts, and vice versa -- because you know & like each other so well?

Then I started on what I was doing, and realized that lately I am getting more involved with programs from which James has benefitted. Because they are in serious need of help and parental support. Despite best efforts, the state's budgeters have chosen to make themselves look good while in office at the expense of future generations.

Many people will be hurting and some good things were saved. Myself, I have tunnel vision, and it's called Education & Special Needs. We have paid into the system for decades and this is what our kids need Right Now.

Next year classroom sizes at my daughter's school will be 22 students per class with no class aide (up from 20 students per classroom and again no aides) (my mother taught for almost 40 years; what I have to say about this fiasco is a whole other post). Early Start funding has been slashed.

Here is the chilling thing, to me:
"The additional cuts Schwarzenegger made Tuesday also include $37.5 million from the In-Home Supportive Services program, $50 million from the Early Start program to screen children for developmental disabilities, and more than $6 million in cuts from programs for the aging." (link to article)

Early Start is what saved our sanity and gave James a crucial boost when we first were figuring out that Something Was Wrong. Our North Bay Regional Center (NBRC) descended upon us and put in a referral for a formal assessment for our son. While we waited 5 months for the appointment, they made services available to us that (at the time) we had no idea James needed.

Since then, I have heard horror stories of parents fighting for almost a year to get these services, as well as the immense benefits of receiving early intervention before the age of 3, due to how the brain grows and absorbs information.
" ... the earlier the diagnosis of ASD is made, the earlier needed interventions can begin. Evidence over the last 15 years indicates that intensive early intervention in optimal educational settings for at least 2 years during the preschool years results in improved outcomes in most young children with ASD." (link to source)

I have a hard time believing that knowing what they do now, the governor and legislators have cut funding to an effective program that can have its best impact on a person's life, as well as that of their family.

James was first assessed by his pediatrician at 18 months, and we were told he was in the range of normal. I was told that again at 2 years, but I insisted on a referral being called in. He was first assessed by the NBRC at age 2 years, 4 months. He was almost 3 by the time he was formally diagnosed with Autistic Disorder, and at a higher level than any of his therapists suspected. His therapist didn't know if he'd be verbal or non-verbal.

Flash forward to a year after his initial NBRC assessment. His preschool teacher commented she had never seen a child progress so quickly in so short a time.

This is why I get shivers reading about our current budget crisis. I feel like we are just barely outrunning a big storm. But what about the others who are caught up in it now? And will not receive the services they should?

I see misery and sadness of families, frustration from the kids, and costs to us all about 15 years down the road that are, in a word SHAMEFUL.

Welcome to CATS

And it's not the musical.

James and our family have been accepted into the Collaborative Autism Training & Support (CATS) program at Sonoma State University. I and the kids attended the orientation meeting today. I loved seeing the campus. There is something joyous for me about being on a university campus -- especially if there are lots of trees. I can smell the possibilities in the air.

The program's mission statement:

To enrich the loves of families of children with autistic spectrum disorders by:
* Training service providers to implement effective interventions
* Providing free respite and family support
* Raising local and broader awareness of autism

Right now I have a binder full of information to sort through. It looks as though we will have a full schedule again for James this Fall.

Despite James being a bit disruptive by wandering around a room and vocalizing very long sessions of "Eeeeeeeee, eeeheeeeee!", I found the meeting to be informative. I was also happy to meet with and listen to other parents. Other parents like us, who love their kids, and want to fight for the best lives for them. How little we know and how much we want to learn!

Here is a link to an article that describes the program, and also features the program's director.