Utopia, my personal hell

I must admit, I worry about the end of the world. Not in a train-in-the-dead-of-winter, stock can goods, Doomsday Prepper kind of way but I would be lying if I said those scenarios it didn't haunt my consciousness.





As evidence of my subconsciousness activity, last week my fears played a staring role in my nocturnal picture show. I had a dream about after the apocalypse (unspecified in nature). My family and I were living in a concrete high rise horticultural structure, utopia right?

In the dream Jonathan and I were strolling through the roof top greenery. As in any good utopia fantasy we are wearing whiten linen, he is hugging me and giggling while I poke him in the ribs for a good tickle. Suddenly a blaring alarm sounds and he runs from me panicked. I frantically try to catch him on his panicked descending route. He is a mere fingers breadth beyond my reach when I realize "the colony" is trying to separate us. "The colony" is trying to kill Jonathan because of his disability. I'm a reproductive female and he is a resource suck, thus the separation and his subsequent murder. Thankfully my dream abruptly ends before the anticipated ended leaving room for the hope that I reach him in time to forestall his execution. Maybe I've seen the Postman one too many times but this fear for my family is real.

I awoke from this dream horrified and reminded myself to listen to my mommy instincts. I guess my point is Jonathan vulnerability is terrifying to me. In even in my dreams I'm shielding him from himself and society. Living in Florida we have to worry about the typical tragedy of hurricanes, flooding, Forrest fires and the general craziness that living in Fl. entails (think ballot counting, retiree driving, and face eating zombies).

I've seen Jonathan become a mess from eating a (yes, singular) chocolate chip cookie. How hard would SCD/organic  food be to come be in a week long power outage? How long would my personal sanity hang on without ABA therapists or school to cage, I mean captivate my children?

Now that I've got the yuck out of my mind I'm going to bed, thank you Internet for being my captivate audience.

My first Autism Birthday party

Autism Daddy

As I've written before I was partly inspired to start this blog by Autism Daddy. I like his brash honesty, his ability to give voice to my thoughts and give me new perspectives on Autism. He wrote about Autism only birthday parties (.http://autism-daddy.blogspot.com/2012/04/why-autism-only-birthday-parties-are.html). Even though my son is six and will shortly be turning seven I've never been to an Autism only birthday party. Today we attended our first.




A republican, a hippie and some older gay women enter
the bar, and suddenly I was "left behind".

 

I can't truthfully say that it was an Autism exclusive birthday party but out of the six primary caregivers/couples at the party, five had at least one child on the spectrum. The intros were fun, hi this _____ her son has/is _____ (funny enough, I liked that, you never had to have the awkward who is going to share where their child is at first moment). There were quite a few siblings and a few kids that were with a babysitter so I'm not sure about their diagnosis or lack off. I had a good time. The parents and caregivers literally seem to come from every walk of life. There was a young mom with four kids, two on the spectrum, an older gay female couple who are adopting her autistic nephew, a conservative middle income couple, myself, the mid-age liberal hippie and another more nondescript mom. The only reason I could fathom this group of people connecting otherwise is the Apocalypse. Yet everyone seemed to chat at some point or another, and everyone was friendly.

I was a bit of a novelty, since we had packed our own food. Surprisingly, my kids were the only GF (let along SCD) kids at the party. Most of the parents were casually curious about what we fed the boys, how we went out to eat, etc, etc. At one point, after all the kids were set up for lunch one of the other mom's approached me and said "now what is the sauce you have them dipping the apples in"? We all had a good laugh when I answered "peanut butter".



"Yeah I saw that crack a few miles back". "What's your dash count"?



Its pretty interesting how people will react to each other when they know you are trudging the same gravel they've been looking at for a few years. The nondescript mom and I talked about schools, classrooms and the all time favorite for ASD mommies, IEP meetings. The older gay women and I talked about their son's honesty and happiness in a northern climate with more personal freedom. The younger mom and I talked about  wanting to have more children and the bone crushing reality of having more children on the spectrum.


 I don't remember their names, yet over the course of three to four hours I openly discussed subjects with those people, that I haven't discussed with nuclear relatives. Who need support groups when you've got Autism birthday parties? All I can say is Luck, Love and hope to my fellow travelers.

Autism reading, library trips and slips

I am a reader. Not to sound pretentious but most television programing shuts my brain down to the Terry Shiavo pull the plug stage! Most nights I have my nose stuck in a book. The library system I'm privy to isn't exactly a complete collection, if you get my meaning, BUT they have been good to me over the years. They were always able to get what I wanted. For the last six (seven in October) years I've had at least one squirmy little body protesting my choice of a playground for the mind vs.  playground for the body. So I've learned about requesting books online via the library website. I must admit I feel a bit guilty because this service has helped me turn the library staff into my very own personal shoppers. I still take the boys to the library, much to the chagrin of other patrons and quite a few library staff members (who I've repeatedly told about J's Autism, another topic for another time). Those trips are designed encourage their love of reading and for me to pick up the books I've reviewed and requested online. Much to my personal joy I recently found out how to request ILL (intra-library loans) online (without a phone call or a in person request, ah my inner Aspie sings). So I'm on a reading spree, getting books I've wanted for years and couldn't get my hands on!

Intra-library loans are loans of requested materials from nearby library systems that have your requested book or material and that are willing to loan the book out.

So I read yet another Autism book over the last few days, "All I can handle, I'm no mother Teresa" by Kim Stagliano (thanks to a online ILL). Even the foreword begins....another Autism book, and boy do I get that sentiment. When J was first diagnosed I went to library and checked approximately half of their (then) Autism related reading material (excluding fiction). Of course their Autism collection has exploded since then to reflect the ever growing need for Autism information due to exponential diagnosis rates.

After I slogged through the first year of J's diagnosis I slowed my reading down a bit. In part due to the absolute necessity for mental rest (I'll write another blog at some point about the panic attacks I was having then) and J being under the care of qualified DAN (Defeat Autism Now) doctor. I had him enrolled in a school for kids with Autism. So I felt the two main aspects of recovery, bio-medical treatment and education/therapeutic intervention, were covered. At that point I began to tread water instead of gasping for air while being pulled along in the rip current that is Autism. I was still just trying to make it through the daily routine, having food prepared (lots of SCD meal planning, cooking, shopping) transportation to and from the school, with little money to maintain a vehicle or gas to fill the tank, finding grants to cover the out of pocket cost of the private school, taking care of another "NT", but difficult child, and a few household moves along the way. In other words my reading/research momentum slowed to snails pace. Since I had consequently devoted the last year to Autism research I took a well deserved and much needed break from Autism books. I read only things that could take my mind away. I truly believe science fiction saved my sanity!

Thank You Terry Goodkind, for faith of
the fallen!

The reality is I still read Autism books, I'm just a bit keener in my pickings. I don't read many bio-medical books because I think many of the bio-medical books have the same common sense message, treat your child's physical symptoms of Autism as well as the other symptom's. I try to continue to educate myself and I will read bio-medical books that have topics I unfamiliar with or newly renowned books. I feel there are many bio-medical topics which I'm out of my depth on so I trust our DAN doctor to handle those topics. Being an Autism mommy means being a leader, and that's one task I'll gladly delegate.

A breech birth is but down vs. head down.

I still read first person accounts, to a degree. Another strange practice I learned via midwifery, surround yourself with positive images and ideas. I swear this isn't from when I read "the Secret"! While I was pregnant with my second child I told my midwife I was afraid of a breech birth, that I'd watched too many episodes of ER. She agreed with me saying "even Abby (on ER) had to have an emergency c-section". So with Autism, just like with my pregnancy I cut out all porn, birth-porn (that's what our childbirth instructor called it because its heightened and unrealistic compared to real life births) and Autism-porn. I love that phrase, birth-porn, to this day (I just coined the Autism one). I look at it this way, I will do whatever I can to help Jonathan but I've got to believe its possible. I know the reality of Autism, heck we live it everyday. I know the statistics. Watching, hearing and reading negative media reports won't help me recover my child, so I avoid them.

These days I just space out the Autism books so that I don't overwhelm myself. Sometimes though, I wonder why I read them at all? Reading that book didn't tell me anything I didn't already know about Autism. In fact, at many points in the book I openly wept at the obvious parallels between their lives and ours. Is Autism the horrific roadside collision I'm rubbernecking at?