Magic Marker Monday: Peace Day

Did you know that September 21 is International Peace Day? I did not. James' sister did.

How did she find out? She was bored and looked at her calendar for something to do. This is what she made, as her part of spreading the message of peace:

Her calendar misinformed her, slightly.

She then took the half dozen messages to all the neighbours we know near our house.

So proud of her!

Yes that was Saturday, but today is Magic Marker Monday.
Visit 5 Minutes for Special Needs for more Magic Marker Monday.

                                      
 

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!

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.

Who Really Pays?

I read this online article,entitled HMO Autism Services Drive Up Costs, and while the author raises some good questions and things to ponder, I have problems with his thinking.

My biggest sticking point is that no one knows what is causing autism, or why the number of children diagnosed has raised so drastically over just a few short years. Until this cause has been identified, how can anyone presume to know the methods for treating it effectively or preventing its cause?

From reading the article, I get the impression that the author is telling people that HMOs already cover any medical issues related to autism, and that "extensive educational and behavioral services for autistic children" should continue to not be covered because they are not medically related. How can he say this if we truly don't know the cause for autism, let alone effective ways to cope with it? And from personal experience, I can say that my HMO does not cover all medical costs associated with autism; I also resent reading the sentence "Families of autistic children will find ways to get covered by HMOs." No, they won't. Especially if they are already overwhelmed with trying to keep their families afloat with one (or more) less jobs and rising tax rates.

What if the cause for some cases of autism are the result of reactions to something in the environment, like asbestos or second-hand smoke? What if we stopped HMO coverage for cancer? And why does this person assume that one policy fits all for everyone affected by autism, because if there's one thing I've learned it's that autism affects everyone differently.

I understand the cause for concern. As the parent of a child on the spectrum, I know how high costs can quickly add up for services such as Occupational Therapy, Speech & Language, and Developmental Services. I have seen other families struggle with pure medical costs and additional health issues. Just imagine those costs going "cha-ching" every 20 seconds (the rate a child is diagnosed with autism) to an HMO CFO.

Mr Enthoven is concerned that "these burdens will not be spread evenly in California." Very true. How about we all try working together instead of pointing the finger at someone else and say "No, you pay for it"?

I think were all pretty hurting from our current and future economic outlook, especially here in California. I think working families are being made to bail out plenty corporations and bad planning from their governments. Speaking as a working class mom with a special needs child, I think we need some help for our children who are affected by something that is still being figured out. This is not only our future, it is our childrens' as well. Please don't make them pay for our bad behaviour and unwillingness to work together.