Friday, February 19, 2010

Parent Check & Connect Meeting - Thoughts about Autism / Aspergers Prevalance Ratios

Last night I attended a Parent Check and Connect Meeting at our oldest son's elementary school.  It was for parents of children on the autism spectrum whose kids were participating in the school's Social Skills class. 

The meeting was from 6:30 p.m. - 7:30 p.m. which was fortunate timing because I wanted to get home and check out the latest installment of Survivor 20: Heroes vs. Villains with the family. (It's about the only time of the week that John and I actually watch a prime time show at its scheduled time rather using Comcast On Demand or TiVO for a 1:00 a.m. "after the kids have fallen asleep, our work is done and I need some down-time before I can fall asleep" viewing.)

John and I are big CBS Survivor buffs and we have watched every season since the beginning.  Justin has too, although he was an infant in Season 1.  Ryan watches with us but mainly for the theme music!  The rest of the time he plays with his cars on his floormat!  If you want to check out some of our Survivor commentary, check out my Karen's Cornucopia of Creativity Blog or the Life and Times of John Krejcha blog.  Weekly updates, good times!  
 
Okay, I digressed.  If you're a die-hard Survivor fan, you'll understand! 

Back to the meeting.  I went by myself since kids aren't invited to the meeting and one of us had to stay home with Justin and Ryan.  Respite care is very hard to find for us and it is rare that John and I ever get out.  Now that Ryan is almost done with his potty-training (just wearing diapers at night), we're getting brave enough to think about babysitters again.  In fact, we even hired one of the neighbor girls for a couple hours on Saturday while we attend Justin's Cub Scout Blue & Gold Banquet at the local elementary school.  I would have loved to bring Ryan but last year he was quite a handful including one amazing sprint away from Mom onto stage during the boys' award presentations and well... it was a bit embarrassing to say the least!

Justin graduates from 5th grade in June and goes into middle school in the Fall. John and I are trying to make sure the transition for him is as smooth as possible.  Once a month the elementary school offers a class in the evenings for parents to help keep us connected with what's going on at school with our kids and so far the topics have been very interesting and applicable.  Last night's meeting was about Strategies for Organization -- Preparing for Homework and the Real World.  (I will blog about this later as there is a whole lot to be said here!)

Needless to say, there are big changes from elementary school to middle school and I think we're all feeling the anxiety even though it's still 6 months away!

Justin has a diagnosis of Asperger's Syndrome and from what I understand, his particular Social Skills group consists of a few Asperger's boys and 1 or 2 with High Functioning Autism. (These are the ones that are mainstreamed into regular classrooms during the day.  They have special center based classrooms as well but I don't know of the numbers there.)

In Justin's school, there are approximately 125 children in 5th grade and I know of at least 4 boys diagnosed on the autism spectrum, 1 that is not diagnosed but all signs have pointed to that he should be (we know this boy and his family) and at least 1 or 2 kiddos who fit into the ADHD group.  I'm not sure about the girls but I know that girls are often underdiagnosed or not diagnosed until later on.

Earlier this year, the CDC updated their website with new research results showing that the average total Autism Spectrum Disorder prevalence in 2006 (children born in 1998) was 9.0 per 1,000 children, which translates to one in 110 children.  Here is a link to that information which has been quoted on many websites and in a lot of new literature about autism.

My oldest son's elementary school may be an anomaly but 5 in 125 is a 1 in 25 ratio...  (and I was being conservative with that 5 in 125 number.)  I am curious to hear from other parents what kind of ratios they are seeing in their schools?
Our youngest son is in an amazing preschool that specializes in working with children with development disabilities or delays.  They have done so for 20 years, although recently they have had funding challenges and we have heard rumors that the school is potentially in danger of closing down if additional funds aren't secured.  Apparently they have been seeing an increase in autism prevalance over the past few years as well as they watch graduates from the state's Birth to 3 program transition into their 3 - 5 year old program.  Ryan just started this preschool last Fall and has one more year before he will hopefully transition to Kindergarten.  I hope the schools will be ready for this new wave of children.

I have a strong suspicion with so much more emphasis being placed on early diagnosis and Autism Awareness that there will be a higher percentage of kiddos diagnosed on the spectrum in 2010 than there were back in 2006 when the CDC study looked at those born in 1998.  My two sons were born in 1999 and 2006 so their classes / peers would not be included in the most current research statistics.

I've attended around eight relatively informal autism support group meetings here in Vancouver, WA for parents of kids on the spectrum in preschool through elementary school.  Each time there have been at least a dozen attendees, sometimes a couple dozen.  Many attendees have more than one child on the spectrum.  Some of the kids were born in WA, some in CA, some in OR, some in other parts of the country.  This is the upcoming wave of students that aren't yet in the new statistics.

As economic times are tough and more and more educational services get cut, what kind of services will be available for our children?  The health care industry refers us to the school system.  The school system refers us to the health care industry.  Even parents with the greatest initiative find themselves running around in circles.

I want to advocate for my boys.  I want to advocate for myself.  It often feels overwhelming trying to be (in no particular order) Super-Mom, Attentive Wife, Devoted Daughter, Business Owner, Provider, Autism / Asperger's Advocate, Devoted Daughter, Family Connector... oh yes and Aspie too...

The topic of Organizational Skills that was discussed at our Parent Check & Connect Meeting is one I definitely could use some help with.  I'll be blogging about that soon!

Best wishes for a great weekend!
Karen

2 comments:

  1. Nice article to know the details. These meeting will definitely help families with aspergers children as they can be motivated. From these meeting people will be getting some nice ideas about the aspergers.

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  2. Hi Skyler!
    Thanks so much for your nice comments! Sorry I didn't get a chance to respond sooner. I find these meetings very insightful. I take knowledge and tips away for both my boys and myself.

    I appreciate your checking out my blog and hope you'll visit again!

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