Righteous ANGER!

I have days where I can accept J's Autism in stride, either because he is having a high functioning day or because the hubby and I have had sometime together. We have much to be thankful for. I love those days, the days where I see dear hubby toss Jonathan into the air, the days where J steals my cell phone to be mischievous and funny, the days where J's eye twinkle can only be rivaled by that of a jolly guy wearing red that lives at the North Pole. We have days with children's laughter, sandy toes and cuddly kisses, those low stress days, few and far, between sustain me.

Today is NOT one of those days. I'm playing go between with J's DAN doctor and his immunologist. The DAN doc wants to raise his IVIG level to correct his immune system dis-regulation. He has NO IgA antibodies and off the chart IgE antibodies. The doctors have already had a pow-wow, which I'm sure our insurance was charged for and we spent precious funds on. The doctors agree we should do a scratch test to hopefully figure out what is causing the off the chart IgE levels. On J's only day off from therapy I pick him up from school early to take him to this fun event. I drive an hour, in the rain over a VERY high bridge to this appointment. Fifty pricks on a squirming peeved child later we found out something we already knew, J's has no IgE reaction too any common food. So I ask the Immunologist/Allergist what is causing his high (ten times higher than normal) IgE levels? He answers me casually "could be environmental, we'll do that test in a few months". Oh and by the way your insurance most likely won't pay for the higher dosage of IVIG. So I've now wasted, precious time, gas, funds and the sanity of my child's only day off. I drive home fuming about the wasted resources and lack of care from mainstream medical. When I email to inform the DAN doctor of the insurance rejection, they have more options. Options are good but they lead to more work for me. More phone calls where I walk the perilous line between being considered pushy or stupid. Of course this is all needs to be done at the speed of light because we have an appointment for IVIG (that I'd scheduled in advance so as not to miss any therapy, again on J's ONLY day off) in less than a week. You try to rush two doctors, FUNNNN TIMESSS!

Yesterday I got J's first IEP for his new public school. I think I may have mentioned that I like IEP's about as much as having my eyeballs sown shut with out anesthetic. We have a whole half hour to discuss this child's goals for the entire year, sure that sounds adequate. So his teacher and I have been sending lengthy emails back and forth, trying to clear up any issues before the actual meeting. Since this is our first year I tread the fine line between being labeled a Bitch and being a push over setting the future tone for all school meetings.

I also got both my boys progress reports today. Those were fun to read, both are behind and having behavior issues. Logically I know life makes no guarantees but I was hoping to get ONE easy kid! My "NT" child is having more school issues than my ASD kid.

I also recently found out the school I want to attend cannot be done online. I will have to pay around twenty-five thousand dollars out of pocket somehow. So the idea of home ownership meanders further down the lane like a mirage shimmering in the distance. 

After everything over the course of this week, it is time to turn to distraction, it's either Facebook or a heavy bought of drinking. I don't have any liquor in the house so Facebook it is. I log on to see this:

Truthfully, this made me want to smack someone (LOL at the opposite effect)! Please don't misunderstand I'm all for civil rights and MLK. Dr. Martin Luther King was a truly great man, with great ideas for humanity but anger is human, to repress it is unrealistic and unhealthy in my opinion. So many of the "crunchy mommas" avoid expressing any negative emotion online. While I love most of their ideals, this seems completely insane. No one says I'm sick of my kid, I'm frustrated with my life, I hate my period. It always some life affirming thing, for example, recently someone referred to their period as a sensitive time of reflection, ummm ok. I can understand that you may feel that way ten periods out of twelve but EVERY WOMAN has one period where she wakes up with a serious case penis envy. 

Well I guess I don't have that luxury. My life is a constant struggle to maintain sanity in a insane world. I feel like

Detective Del Spooner (from I, Robot): "Let me ask you somethin', Doc. Does thinking you're the last sane man on the face of the Earth make you crazy? 'Cause if it does, maybe I am". I have a child with Autism with serious bio-medical problems. I have another child who I suspect I should be treating bio-medically but cannot afford to do so. I have IEP meetings, teacher conferences, many, many, (insert specialty here)ologist's appointments. I have SCD cooking, budgeting woes, scheduling frustrations. Plus I have my own personal dreams that linger around the edges of my consciousness.

I live in a world where pizza sauce and high fructose corn syrup are "vegetables". I live in a world where injecting babies with potent neurotoxins is the norm. I live in a world that denies the Autism crisis while continuing to cause it. I live in a world that creates children that cannot function and then refuses to help them achieve Independence. I live in a system where only the worst victims with the best advocates and the most money get help. I live in a world where you have to lie and cajole to get what little help is available. I live in a world with a broken system and I AM ANGRY.

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?

How Autism can be like a bad relationship

I have a very close friend that is going through a divorce. It had been bad for a long time, interestingly one of the ways I knew how bad it had gotten was the fact that we stopped talking about the problems, arguments and cruel treatment she suffered almost everyday. This relationship had been dying for so long it had become a moot point to talk about it. I mean what could you say "yeah he verbally shit on me again today". So instead we talked about everything else.

In some ways I can drawl parallels between a bad relationship and living with Autism. I'm a stay at home, exclusively dealing with therapy, diet, research, doctors appointments, IEP meetings and all the other trappings of Autism. It can make my verbal range of topics a bit small. Day to day life involves cooking, cleaning and arranging therapy appointments and ferrying J to the appointments, all the while trying to give NT child his share of attention and love.



Hmmm, I think this is missing something.
Oh yeah live active cultures, the defining quality
of yogurt!



On top of being so busy J having Autism has changed me. It has greatly lessened my interests in prime time TV, the latest techno gadgets, fashion trends or celeb gossip. The whole lot of it seems like a stupid distraction designed to enslave us into buying garbage and filling our lives with it (really, you can't take it with you). Truthfully it holds no value for me, when your kid can't talk you have more important matters to deal with than Tommy and Katie's oh so riveting break up. I don't give a rats ass who won American idol this year or who the contestants on Dancing with the stars are. I now watch the commercials on Cartoon network aggravated by all the "yogurt" they advertise or the sugary cereals aimed at children that seems to be  pumped into their tiny brains from the moment they can focus their eyes on a moving target. I have in the last few years, seriously begun to wonder why Brangelina outings to the mall is news? Also don't these people deserve the basic human decency to go about their business without photographers capturing every split second unpleasant expression for it only to be used later with an out of context caption. You can't tell I've been harassed or stared at in public or anything.

I find it interesting that even other ASD mommies have this coping mechanism of treating Autism like a bad relationship. I have one mom on my friends list that posts pics of shoes, lingerie, various handsome male celebs, anything but Autism, her kids included. They just don't talk about Autism and what it does to their lives. I can honestly see why, it's a freaking downer! What can you say "so my kid literally shit on me, the walls, the floor, again today". People don't know how to respond and it pushes people away when you are the most desperate to have friends and family to divulge too. Its a tough situation, the all consuming drive to help your child balanced against your family and friends (not to mention your own) sanity.



wow, another shocking Autism statistic.
Color me unconcerned.



For me it is also about awareness, IMHO Autism is like smoking, it's a preventable epidemic that is spreading out of control. I saw this video this other day (http://bloggers.maker.good.is/projects/THINK) and one of the last statistics stated was that  if Autism rates continue to increase at their current rates 1 in 9 children will have Autism in ten years, OMFG! I've told this to a few people and gotten almost no emotional response, now that truly frightens me.

a regular Tues/Thurs customer.

I know J having Autism has made me a better human being. I understand so much more about my environment, food production, our immune system and how dysfunctional our medical system and government can be. I've also learned a lot about myself and who I'd like to become but that isn't exactly light dinner conversation. Speaking profound truth learned through heartbreaking lessons just isn't the "feel good comedy of the season". The hard truth is I'd love to be ignorant and talk about DWTS and eat at McDonald's on Tuesdays (kids meals 1.99 or so they frequently remind me via advertising to the poorest sectors of the population). I'd dump all that personal growth into the nearest non-recyclable trash can if it meant I could have my kid back!



Gee thanks for the downer this morning Aunt Mary!
I haven't even had my coffee yet :(



The whole thing makes me think of the people on my Facebook friends list. Everyone has a few friends that they have blocked their status updates either because they are uber religious and "love Jesus" several times a day (and want you to prove your devotion by joining them and "sharing") or because they frequently post pics of abused animals or children with Cancer/Progeria, etc, etc, etc. I know I've blocked a few. What I wonder is how many have blocked me?  I've been very blessed to be supported with J's Autism and our choices in regards to it, but I wonder how long can those around you not get sick of hearing about Autism when you are sick of living it.

our fourth of July normalcy

I had a pretty interesting day on July 3rd that gave me a bit of inspiration. I spent that morning baking. My kids have been on specific carbohydrate diet for over four years, so typically I spend one day a week doing  batch cooking. Today's "to do" list included: Sweet potato cake, Lima bean mash, strawberry applesauce and squash chips.



It's 83 degrees in my house and I've got to BAKE?!

As I hustled around the kitchen preparing for the busy fourth of July weekend my phone rang. Praying it was the AC guy since our air hasn't been working well. I answered in my most cheerful false voice (that didn't belie my sweat soaked irritation). It wasn't the AC but another parent from J's previous private school.





I've been trying to set up a play date almost since her child started. He is a sweet boy with very few real "behaviors". So I was happy to hear from her, after all this is supposed to be the summer of play dates. She had just gotten back into town and made some small chat with me. We step up a date to go to a local splash park. One thing I love about splash parks is that EVERY kid is running around flapping their hands and screaming in absolute ecstatic joy, so typically, I don't have to have the Autism "don't ask, don't tell policy" in effect. After that I tried to get off the phone when she blurted out, "I need to ask you something, if that's okay". "Ok, I say ask away". Honestly I can't shut up about Autism.

She proceed to ask me about J's development. When did he develop speech, did he have a regression, when was the regression, how did we end up at the private school? I calmly recited the list of answers I've given SO many times. She would give me her sons counter points in a quavering voice. As we finished up the Q & A session she confessed to me how great it was to talk to some else about this and how her family wasn't supportive. Her heartbreak was nearly palpable. She never really got a diagnosis for her son or doesn't remember it (she told me she'd have to look through her paperwork for it). Which I find both heartbreaking and odd. I remember to this day, nearly six years later, the day we got the diagnosis, THE DAY! It's my personal equivalent to the Kennedy's assassination or 9/11, you just don't forget THAT DAY. 



UMMMM, I forgot? Not likely

We chatted on a bit more. I told her about a local support group and we finalized plans to meet. 

I used the play date excuse to recruit another mom who I like and don't get to see enough to wrangle her into coming to the play date. Her son and J had been in the same classroom on and off for over three years. We talked about the summer and how the kids were doing as a result of the change in schedule. J is getting louder (lots more screaming). Her son has is having difficulty too. Also since starting summer school he started shunning all peer to peer interaction by putting his hands up and yelling "NO" when a peer approaches him. She's worried about his placement for next year. His behaviors are getting to the point that he cannot continue to function well in a academic classroom. After that we discuss the ABA that he just got approved for, a whole whopping eight hours. She's trying to get it done at the school but they haven't placed him with a therapist, one month in on a six month insurance approval (that she fought tooth and nail to to get!). Then we talk about the dental work her son has to have done, there is one dentist that takes their insurance and that is willing to put him out. Of course it's far out of their way, inconvenient and it is terrifying to have him put under anesthesia for a simple cleaning, cavity  fill and set of x-rays but what choice do they have. 

They both sound like I felt when I wrote "it 10 am and I'm exhausted" (http://autismspewage.blogspot.com/2012/07/im-exhasuted-and-its-only-10am.html). I feel like I did what I could for both. I was a shoulder to cry on and someone to complain to and bounce ideas of off. I gave them what information I thought would help and even offered to make a few calls myself.

After that my day went on. I finished my cooking, got my kids ready and went out to my best friends impromptu Barbecue. I have to say it was wonderful. All the kids played together, J and her youngest spent most of the night "fighting" aka wrestling. They cooked on the grill, keeping my kids food separate. The great American organic hot dog. All the kids ate together never thinking to question why my boys weren't eating the same things they were. Then we did sparklers which was a bit scary, J's doesn't seem to fear them, its a bit of a moth flame situation there. After that they set off a bunch of really beautiful fireworks, everyone sitting on the drive way. It was Norman Rockwell (of this era) normal and absolutely blissful. 

I just have to take a minute and to acknowledge how grateful I am for that. J is by far not neurotypical but he's not excluded or treated differently at this point either. Our friends and family have never turned us away or not respected our treatment modes or scoffed at our ideas. I know that that support alone has helped us as a family and helped him in turn make the significant progress he has made. After seeing so much sadness, so much downtrodden aloneness I feel grateful for the small group of people we have. I have a lot of days that are like "its 10am and I'm exhausted" (http://autismspewage.blogspot.com/2012/07/im-exhasuted-and-its-only-10am.html) but I guess the great thing is that ALL the days aren't that way. I don't feel totally adrift, heartache palpable to a near strangers. I'm not lost with nothing to do, wallowing in the choices I should make. In fact I've got TOO much to do. I guess it's just another Autism dagger that cuts both ways, as long as there is something to do, well you've got something to improve upon and that means that improvement is possible.