Zoo Train

 
I wrote this in response to a statement another parent of an Autistic child made.  She was just saying how unjust it was that the Asperger population as a whole was overlooked as needing treatment.  She was wondering where the MLKs of the Asperger world were.  How we could get a grass roots organization going, etc...  I wrote this in response:

 "My daughter will be turning 9 this month. And, yes, it's difficult for me to watch the social deficits and know I've not the training or experience to clinically help her. Right now my 4 yr old son can only say a few 3 word sentences, if that and all of my resources have gone to him in the form of private therapy. I tried to get my daughter on a 504b, but I guess that's for more physical supports in a classroom. This next year I'm thinking of volunteering at her school and possibly running some kind of social program. I'm thinking like, a social tea at lunch, or even science club.....SOMETHING where I can be over there and watch her interact with her peers. At this point, financially, it's my only option.
As far as Asperger MLKs, (from what I've read) the Asperger community is diverse. There are a lot of outspoken Asperger individuals but most seem to be centered on awareness and acceptance. Which I think is fine, and wonderful and I agree and all that, but I have a daughter who cannot read visual cues, intonations, inferences and other socially aware "norms" and I worry for her future just as a young woman. It's a scary world out there and you need to have street smarts as a woman. For me it's a safety and quality of life issue. All of this seems to get lost in debates. But that is why I think the Asperger community doesn't have one voice. Just because of the diverse opinions regarding "treatment" vs "acceptance' vs "diagnosed levels" and who is considered Asperger and who is not. Some days I find it amazing we can even paint the diagnosis of Autism with such a broad stroke. There are definite characteristics and traits, and yet, all are so very different. It's hard to unify all of that even in my own mind. lol"

Rumor has it that the F.E.A.T. of Oregon collapsed under such debates.  I have no idea if this is true or not, but from the little experience I have as a parent of very different Autistic children, I can see how heated debates can easily spark.  Parents are stressed out, frustrated, have very little support for themselves and feel very passionate about their children and about the decisions they've made regarding treatment.  Also, heated reactions could be a matter of habit since so many of us have to continually argue for therapy with districts, family members or even a spouse or significant other.

So how do parents unify under such diverse circumstances?  Many parent organizations have been successfully created and run under such conditions, why do they succeed where others fail?  I'm guessing in "the people."  Man, I hope I can make this Parent Teacher Organization work.

Two words for how I'm feeling right now as a pro-active parent of an Autistic child......
zoo train.
(Which is actually very nice.  The Zoo's train in Portland.)

Never Put Off Until Tomorrow What You Can Do Today

This is my first blog entry documenting my life as a mother of two children with Autism Spectrum Disorders (ASD).  One, a toddler, non-verbal, and two, an older child with Asperger's Syndrome.  After having lived with these diagnoses for over a year now, one might think things would get easier.  They don't.  My response to the difficulties has gotten easier though.

I intended to start this blog awhile ago, documenting successful activities my children engage in together; recommending treatment programs I've found to be helpful; and educating others on the disorder(s) and the need for funding research and inclusive health insurance laws, but as a single mother of 2 ASD children, I have had little time.  I am only MAKING the time now as an outlet to vent the frustrations that come with living with and caring for children with Autism. 

I currently have a problem.  It is the fact that I cannot find, no matter how hard I try, affordable housing for us, and excellent programs for BOTH of my children IN the same area.  I currently live in Ogden, Utah and have found an EXCELLENT program for my non-verbal 3 yr old.  It is with the Weber County School District who has wonderful, caring therapists involved in their Early Intervention Program and wonderful, caring therapists and teachers in their new "Partners for Success" program (Preschool Age 3-4).  "Partners for Success" is an excellent program.  My 3 yr old has 4 hours of preschool 4 days a week with the hope of graduating down to 2.5 hours of preschool.  They are using a form of ABA therapy to gain instructional control.  My older Aspie, however, has NOTHING here.  My Aspie is very intelligent, self taught to read at 2,  and struggles socially as all Aspies do.  A "504" will get guidance from a counselor, maybe a social skills class once a week, but the funding for education in the state of Utah is poor and there are no accelerated learning programs here.  So, after looking at all options available to me, I've settled on a decision to move to Camas, Washington.  I've heard they have a good program there for Autistic children and I have friends and family in the area offering support to us.  I feel great about the move for my Aspie, but I wish I felt better about my 3 yr old's treatment options.  It looks like private instruction is my only option to equate what Weber School District is doing here.  It is a very expensive option though.