Happiness by proxy

that DAN doc consult left me feeling
something like this.

Sadly, I was wrong about Jonathan's last chelation. On our last phone consult with our DAN practitioner I got the news he STILL has lead in his body per his last set of labs. I called my husband the day of the consult and desperately tried to hold back the tears while I was driving. I was consumed by grief, sadness over our future lost happy weekends, gone to chelation and the money, expense and aggravation spent to get there. One reason I love DH is his never ending optimism when it comes to J. He said to me, in a voice as calm as a still lake, "well that means he can improve more, so we'll do it". At that moment my tears dried and I calmed, shook by his insight. He was right, more chelation meant more room for J to improve. So I tucked my tail between my legs and accepted the fact that we have more chelation for J to complete.

Yesterday was our third chelation back on schedule. While most families are dressing in their Sunday best to go to church, we were packing the cooler with snacks, grabbing books and DVDs, and sending the kids to the bathroom for one last bathroom run. All hail Autism recovery, our sole religion. We got on the road late but since we've driven the route so many times we made excellent time. J took his IV like a champ and we were in and out in a flash. This process is getting easier on him too, thank god for that.

After chelation yesterday we went to the beach. The beach we visited is about an hour south of where we live. We would never normally take the time to drive there. We just happened to be in the area for J's chelation. It was a stunningly beautiful day. The beach has a marble mix of white and black sand, crystal clear aquamarine water and had a sky that exemplified the color "sky" blue. We swam, splashed, frolicked, hunted for shells and sharks teeth and had an effervescent time.

Oh gluten, you dirty, dirty gluten!

As we drove home feeling sun weary but soul sated this thought burbled up to my conscious thinking. I'm beginning to enjoy J's chelation and IVIG. Don't worry, its not "the enjoy like putting Pine-sol in my kids oatmeal, kind of enjoyment", its more like, that is our only family time and we are making the best of it, kind of enjoyment. I think unknowingly we've begun to make the most out of those days. I've come to relish the "after" time. I enjoy the side trips to the beach. I enjoy the snuggles, movies, and chocolate cafeteria cake (which I would never make at home, contaminate my cookware with Gluten, please) during IVIG. I enjoy the ride to and from our IV destinations, it gives hubby and I time to talk. I enjoy talking to the nurses who know us, and appreciate our situation. I used to gnash my teeth with worry the night before an IV for J (don't get me wrong I still HATE it) but as time goes on it gets easier on him and easier on us as a family.

Now I think (think being the operative word here) that we have less than one year left of chelation. I don't know how long he will have IVIG. This time around I've decided to take as it comes. I'm deliberately taking my eye off the finish line to focus on the people and scenery around me and I plan to relish them both.

The wedding update that wasn't (nobody really cares about the color of the napkins)

In my Linda's lament style handwriting my blog ideas stare up at me from my kids reused composition notebook. 1.) WEDDING UPDATE:  the title seems to glare up at me from the top of the page. If you read my blog you know that one of my first posts was http://autismspewage.blogspot.com/2012/04/im-sick-of-being-autism-poor-and-i-want.html was about our lack of funds to get hitched. The only real news about our wedding planning, is that there is no news, and truth be told that's good news! We were granted a stay of execution. In other words we got our venue to bump back the date to after our tax refund. That was a bullet dodge of Matrix proportions!

So I'd like to write about my brothers recent nuptials. The only other person on this earth with a nearly identical set of DNA to mine was lucky enough to find his mate. I'll admit that when I found out he was getting married BEFORE me, my little brother, I was jealous! That lasted all of five seconds and then the joy of his growth and happiness filled me with glee.

For his wedding, he gave us a wonderful gift. The gift of NOT traveling with my father and two children (yes that would be five passengers in a car designed to fit four). Even though he lives in Tallahassee Fl. he decided to have the wedding here (in central Fl.). He said it was a meeting point between all the guests, surrrrrrrrrrrreeee. All that meant for me was not having to take my Aspie dad, Autistic son, ADHD kid and PITA hubby on a four to six hour car ride. I all had to do was show up. The boys were even asked to be ring bearers. I thought that very brave of his honey, she is a speech pathologist. Side note, my kid with Autism that maintains ninja like silence when you think hes snuck out of the house but is really in the closet wouldn't shut up for my beloved brothers wedding, it was FUNNNN getting constant side glances from her granny.

Take away the "hilarity" of the Giraffe outfits and you've
got our drive up to Tallahassee

Since I live close to the venue and I'm (*sort of*) doing wedding research myself I expected many calls, but no, true to form my brother and his bride needed zero help from me. I was both thankful and sad that I couldn't be of more assistance.

The day came and the venue was beautiful. He had a sunset beach wedding. At the reception he and I spoke a bit. He told me how he'd built the arch way and the table toppers out of a neighbors bamboo and spare bike sprockets. He was very DYI before it was cool. He grabbed a napkin and said "everyone worries so much about the color of the napkins but who really cares now". I looked around, everything looked perfect and beautiful and no one was looking at the napkins.

I hope to take that lesson into my own wedding planning. I hope to remember it will be alright even if it isn't. I have a new wedding motto, "nobody really cares about the color of the napkins".

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?

The "F-word"

I'd say she was caught a bit off guard?

This is something that can only be appreciated by another caregiver of an ASD child. J has started saying the F-word. Let me clarify. Monday J got mad at his ABA therapist and said "F&*k" and of course she was shocked and he caught her staggered face and stammering reaction. When he caught that reaction he went into to repeat mode. While she brow beat him into practicing hand writing he mumbled over and over under his breath "f*^k, f*%k, f#$k, f*^k". At that point she had steeled herself to the word that shall not be named and ignored the behavior. On this incident I didn't get the full details because I didn't pick him up from therapy that day. I got the abbreviated husband version of events,"she told me he said f*%k. No, I don't know why". I decided not purse it until it became problematic.With ASD you've got to pick your battles.

The next day I get a note from his school teacher, Jonathan was on orange, aka defcon four on the school behavior chart! He said "f-word" to his teacher, not THE f-word but the phrase "f-word". I had to read that note a few times over before I completely comprehended (and was sure of) what he actually said and I'll admit I laughed a bit.

my punishment was a bit more progressive
but you get the point.

Anybody else ever read the Secret? Dam me and my anti-intentions! What you resists persists, what you resist persists! So that's why my kid has Autism (side note, wonder if they've ever done any studies on that idea, that may be a bit more useful than all the current genetics studies they are conducting now, again). Of course I sat down and spoke to him about it. He lost computer time, his giant precious moments eyes teared up and he ran to his room blazing with fury and slammed the door as only most angst ridden teenagers (and ASD kiddos) can. I emailed the teacher apologizing and letting her know that he would be punished. Of course she was understanding and thankful I'd followed through at home. She even placated my parental naughty word guilt by saying he wouldn't be the first and won't be the last, thank god teachers are people too.

I got to witness this fun little quirk myself  yesterday while working on his first bit of homework. It was another hand writing task, apparently those are his favorite! As I sat him down and got him started when I heard him say "f-word, f-word" in a clear concise (six year old) voice. Hearing he's been saying it from someone else and hearing him say it myself are two totally different things. I managed to play it cool and he stopped saying it with zero intervention on my part.

So my question is where did he get the term "F-word"? Like I've previously written in the post growing up with the word retard  (http://autismspewage.blogspot.com/2012/07/growing-up-with-word-retard.html) that isn't a word bandied about in our house. One of his ABA therapists speculated that someone said to him don't say the"F-word" after he said f*#k  and like your typical (pun intended) Autistic six year old he took them L-I-T-E-R-A-L-L-Y. So now the "F-word" has become a curse word is his mind. In my house the "F-word" and f*#k and ALL variations of said vulgarity are now banished.

Even though he has Autism and can be expected (by DSM-IV criteria) to say and do things that are socially inappropriate I still feel responsible for what comes out of his mouth. I'll never forget how often my parents told me that my behavior reflected on them (of course at the time I didn't care). I think its hard-wired into to our DNA to want our kids to behave well as a reflection of our parenting abilities. While I hope J will develop this skill I have to accept that he may never be able to tell socially appropriate words from socially unacceptable words.

Another bittersweet Autism moment brought to you from my life. "F-word" it, I'm out. :)



How do you break up with your kids therapist?

The school year has hit us full force. This Tuesday we begin our third week of a full time public school for both my boys (which is my excuse for not having written anything lately, don't worry I plan to get back on it!). J is doing well, as I predicted I'm having more issues with his "NT" brother than him. Long school days are blessing and a curse, the days are busy but quiet and productive, the nights are harried and busier and that's what brings me to this topic.

J's schedule is INSANE! I wake them up at 6:30am. We do breakfast, grooming and we're off to school by 8 (OK closer to 8:20 most days). I pick them up by 3:10 and we're off to ABA by 3:30. He has ABA till 6pm and then he comes home and we do dinner, grooming and the bedtime ritual. By 8 o'clock some days he's asking for bed. He has one day off a week after school (during which I try to get in a play date for "social skills").

I'm having an issue with Wednesday's. We started private OT March 2012, mostly to get a grant to help pay for the private school he didn't end up attending. He did need help with some things that OT's specializing in helping with. He has a lot of trouble with three point pencil grasp, dressing himself (zippers and button's mostly) and he does a lot body crashing. So even when we decided not to purse the grant I decide to keep the OT appointments going. The OT is closer to his old school and she had a slot right after school, that was then. Now she has no appointments that don't interfere with either school or ABA and we have to ddddrrrriiivvvvveeee forty minutes to get there (vs. coming straight from his old school). On days when he has OT, we have school, a short ABA session and then the OT. I begged for an appointment that didn't interfere with either school or ABA, but she just didn't have it. Plus the way our insurance is set up every dollar we spend on OT takes away from our ABA funds!

this is my idea of teeth gnashing.
Oh the agony

So after much hand wringing and teeth gnashing the hubby and I've decided to cancel his OT appointments but dam if I don't feel like shit doing it. The hubby's says to me, "well whats more important, OT or ABA?" Honestly its a clear choice, ABA! I know he needs more occupational therapy. I know he could really benefit from more time with her but I just can't do it! I'm so sick of the scheduling, gas money issues, the rushing, the driving. I just feel stuck. Truth be told with all the frustrations with scheduling I like the occupational therapist. She is good, enthusiastic and really knows her stuff. In the last four (almost five) years I've meet many, many, many a therapist and a good OT can be hard to find!

those two big cogs are my sanity our
budget, both being pulled in a million
directions, both essential to every
other smaller cog.

Tomorrow is D-day and I'm still reeling on how to do this (or truly if I should). My logical mind knows in the past we've relied on school OT (yeah and look where that's gotten us). I know it's hard on us in gas, time and my patience level (which is at an all time low these days). The hubby and I have always agreed to do everything we could for J while keeping our family in tact. Keeping our family in tact means keeping my sanity intact (which is a big cog in our family wheel) and trying to keep our ever so slim budget on track. These OT appointments strain both but I still truly wonder how do you break up with your child's therapist?  

When we left his private school I wrote them an email to tell them I wasn't re-enrolling him. There was a natural break where we chose to renew or not to renew every year but with OT it isn't like that, it is basically an ongoing service (at least in our world). So I've decided to go to his next appointment and let her know in person. I think that's the least I can do and I'm sure as a professional she'll understand (at least I hope so), heck it may be nothing to her. I know she has other families that want that spot. If I've learned one thing from having an Autistic child its that you don't burn your bridges with providers. I hope this OT understands, in this case it really is ME and not her, but who wants to hear that crappy break up line! 

REALLY, we love you as an OT. It's me, not you!

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.

My short term midwifery mini pity party

So I experienced a bit of an ego blow this week. I interviewed for a job and I didn't get it (and honestly that is a first for me). Here is the thing, I WANTED this job and not for the money. It was a job doing administrative work for a local midwife that runs an international online midwifery school (among other very cool things).

Cosmic waterbirth and all consuming connection

Ever since I had my second son via water birth at a birth center I've though more and more about becoming a midwife. I wish so many women could have the experience I had. I really felt that kind of empowerment from my second son's birth set me up to able to battle Autism. Midwifery is the only thing I've felt called to do since then. I know some moms after their child is diagnosed go into special education or nursing but that's not for me. I eat, breathe, and live Autism enough at home. I also think Autism and Midwifery do have some connections. I think the health, diet and care of the mother definitely affect the baby. Also many people speculate about the pervasive use of ultrasound or interventions at birth possibly causing Autism. I personally think Autism is a melee of circumstances regarding the mothers body, pregnancy health, birth, infancy, early childhood, environmental factors, genetics, and vaccines that cause Autism (and I'm sure I've missed a few that I'll think of later). Yep, all of those and THAT is precisely why it is so hard to recover a child from Autism, because their can be SOOOO many factors that went into causing it. I also think that is why you hear the saying "when you've met one person with Autism, well, you've met one person with Autism''. Since the circumstances that caused each person/child's Autism the cases are vastly different they will have vastly different symptoms. Overall though, I feel by affecting one (birth and all that goes with it )you can change the outcome of the other (children suffering from Autism ) to some degree.



But I digress, back to the job I didn't get, and the dream I'm worried I can't make happen. So for about five years I've been pinning to become a midwife. The problem is I don't really have the time or the money to make it happen. The requirements to start midwifery school (for me at least) are 1. clep liberal arts math (I've got the other college credits to get in already taken care of), 2. become a CBE (or child birth educator) 3. take a course to become a doula. All three I'd have to pay out of pocket for. Once I finish that I'd have basically three options, drive to Gainesville for two days a weeks for the next three years (and stay overnight with strangers) but this one I could get Federal grants for the tuition. The next is a marginally more expensive private school nearby here that I cannot get federal grants for (but I wouldn't have overnighters with strangers away from my children). Or option number three try the online school, recruit a preceptor myself and take my exams the hard way, which is all out of pocket as well.

To tell the truth I refuse to commit to a midwifery education until I'm certain I absolutely can fulfil the terms and commitments to complete my education. So even if we were to put the lack of money to pay for said options aside I'm not totally sure I could commit to the time terms. With J starting public school this year and the eventual battles that will come, well I just don't see it happening. This is one of those, "has Autism taken this from me too" moments. I can't help but wonder what would my life be like if I J hadn't developed Autism. If we didn't have to make that commitment to recover our child from Autism.

Let me tell you a bit about why I though this was my destined opportunity. About two years ago I was reading the Florida School of Traditional Midwifery site (http://www.midwiferyschool.org/fstm/)  and they were holding a "So YOU Want To Be A Midwife" seminar. I've always thought midwifery is something that would be a great career to shadow someone in before you began studying. I mean you are either made for that job or you aren't and there isn't any shade of grey on that one. How do you know though? I'd experienced a water birth myself, read every book about midwifery I could get my hands on, watched youtube home birth stories and different natural birth documentaries (in my lol spare time, I think that shows some commitment right there). Still truth be told, for me that wasn't enough. I really feel like that is something you've got to get in on the ground floor to know that its for you, you've got play witness, see with your own eyes and heart. So I saw this a golden opportunity, the closest I could get to playing shadow for the biggest choice (besides parenthood) of my life. I called and signed up, took the time off of work, miraculously I had the money at the time to attend. The day of  the seminar I left on time. At four in the morning it was dark, air felt crisp and cool. I picked up a chai latte and popped in my latest "Sookie Stackhouse" book "From dead to worse" into the CD player and got the GPS ready to go.

OUCH! Why mama, WHY?

I had gotten about half way there when I passed a Dodge Charger that was seriously tailgating the car in front of him. As soon as I'd gone by the lights blazed to life, gotta love those unmarked police cars. I thought he was trying to pass for an emergency, after all I wasn't doing anything wrong. Well it was hilly and wet and I hit the guard rail and pulled a Titantic (scraped its whole side) on my beloved ride. It was humiliating, he'd pulled me over for doing eleven miles over the speeding limit, on the interstate, take a minute to process that one. The front of my car was wrecked, at first they though it was undrivable but then with all the trouble getting a tow so far from home the FHP officer that had pulled me over ended up changing the tire for me. I limped home with a one hundred and sixty dollar ticket, mangled front end, angry lump on the skull and dashed hopes.

I was angry, mostly that I couldn't make the seminar (oh how I hated the idea of being a no-call no-show). Only now, can I laugh about it. After I'd brewwed it over and simmered down a bit I began to think. I decided to use the resources I had at hand locally. I called the other local midwife that hadn't done a pelvic exam on me (wanting a more objective view, no pun intended) and asked to interview her directly. I felt like a genius. I ended up with her apprentice, a wonderfully bubbly woman of god. She was a fount of information and answered all my questions and told me I'd make a great midwife (which flatterd me immensly). I left the interview with a heart full of hope and firm in my convictions to bide my time until I could take the next step.

She gave me her name and I friend requested her on Facebook. I enjoyed her (and the other local midwives posts) about baby catching and lived vicariously through them. They have an amazing part in everyday miracles that brings them in to touch with a wonderful caliber of people. My heart cheered for her when she got her Midwife Licensure (LM). It was she who posted the help wanted add on Facebook. At the interview she described the position and I couldn't have asked anything better! Basically I'd have been working directly with her, helping her with educational materials, preparing birth kits, attending the seminars (that I need and cannot afford now) and so much more while getting paid. The timing was also wonderful, of course both my boys will be in full time school next year, assuming all that goes well (yes I know that is a BIG assumption) I'll have eight uninterrupted daylight hours to myself. Plus to tell you the truth I really GOT her, I liked her. Her last assistant also had a son with Autism, crazy right. Seems like a perfect fit and the timing seemed nothing less than devine.

STOP, no really, I said STOP!

Well alas it isn't meant be and I don't want to begrudge her. She is trying to do this world good, god only knows the world needs more of that! I would be lying if I said it didn't sting though. I know now, only in retrospect, if I had made the seminar two years ago and thus been motivated to jump right on it and go to school I may have not gotten J into ABA. I wouldn't have traded to the two, my dreams for his life, not a freaking chance. After my up close and personal meeting with the guard rail I seriously began to wonder "am I not meant for midwifery"? I mean that seems like a pretty clear sign. I was "stopped" and then gravity had it's say and stopped me as well. My next question to myself is "is this a test of my convictions, should I let the stopping stop me"? At this point I can't say I've conclusively answered either, but with a little perspective hopefully I'll just see this as another step in the journey. I've been delayed but for the right reason, until the right time.

The Wii chronicles and does it ever get easier to hear about your kids deficits

Ok, Ok, we'll work on something
else today, no more Wii. I get the point 

I think maybe we should give up trying to teach J to play Wii. We had another AWESOME morning working at it today. This morning I didn't get physically maimed, don't worry. We actually tried  (well tried to try) another video game system. A really wonderful generous friend gave it to us when I expounded on our Wii troubles with J. She gave us her son's V-tech with ten games. It's much more skill level appropriate for J. Her son has Autism too and had the same trouble with learning to play Wii.  Although I'm pretty sure she hasn't received any facial wounds trying to teach her kid.

After much ado with wiring and near TV destruction via dropage the game system was ready to go. We even gave it a go round without the therapist to check out the features and get used to the functioning. He actually did fairly well even though he didn't exactly win at Scooby-doo logic ball. All was well unnntttiiillll I tried to get it going this morning. I turned it on and it flashed this glowing bluc logo at me 

aaaaaaaannnnnnnnddd that was all it did for the next fifteen infuriating minutes. So I did what I always do when something breaks and I cannot fix it by getting gas, I called the hubby. He seemed to be able to get the thing working when we last tried. What do I get from him, "I'm busy". "I'll be home in a fifteen minutes". To give him his credit he was actually at work but the therapist is sitting on my couch billing me for EVERY MINUTE while I fiddle with this stupid thing so I'm feeling a certain sense or urgency.

At this point I pull J into my lap hug him and joke to J that video games aren't going to be his "thing". I tell him "you'll cure cancer or be an astronaut but you'll never learn to play video games" (so forget the flight simulator, its crash or fly for you kiddo, don't worry I didn't really say that). The therapist jokes that the universe doesn't want it to happen and part of me agrees with her and universe.

Suddenly J says "Mario Cart". I'm like "you want to play Mario Cart"? He says "yes". So with no small amount of trepidation, I step it up. Of course by time it's set up Hubby comes home. The therapist, Hubby, and myself try, gently to persuade J to switch back to Vtech. The idea is the more success he achieves on a simpler system could build towards the harder system and of course he doesn't want anything to do with this, of course.

We do a few rounds of Mario Cart with some success, this time he mostly pushes one button without lots of prompting. He's also holding the steering wheel nearly independently (but not steering). He's also not sliding down our bodies trying to evade this unpreferred activity, screaming or throwing (moving up in the world). So at this point my job (or who ever the adult that is helping him) is too give simple verbal directions (turn left, we are turning left now, etc, etc, etc), help him steer, give lots of verbal praise and remind him to push that one freaking button when it slackens under his grip. Since Hubby is home he took a few turns "coaching".

All the while the therapist is sitting watching. She gives us verbal directions while we give him verbal directions. She thinks we should give him only two choices of characters, which I think is stupid, those choices are half the novelty and fun of the game. J asks Hubby for Bowsers castle, which is a really challenging course that the Hubby traverses without J so much as touching the buttons. While she lectures me on how this game is too complicated. How its to much sensory information to process. She reminds me  that cognitively he's more like a two or three year old. All of these points  are reminiscent of our conversation shortly after he walloped me in the face during our last Wii session.



You want WHAT!

 I have to admit I'm frustrated. We want to him to learn to play Wii. Kids his age play Wii. His peer group and the kids that are around us all the time play Wii. His brother plays Wii. And most importantly he WANTS to play Wii. Last year two weeks before Christmas, he suddenly overnight became obsessed with Skylanders. Long story short after Mrs. Claus had prepared for Christmas she had to return the "preparations" and re-prepare with Skylanders. Of course Christmas morning we popped it in and tried to get him to play and the rest is history.





Here is what happens now, Daddy and brother play while he watches. Lately he hasn't even been watching. He'll get on youtube.com or go build Lego's quietly in his room, by himself. He doesn't even get to play the game he so desperately wanted. When we have playdates he is pushed to the side. He can't play and they know it and so they don't include him. His brother is five, he doesn't want to tutor his older brother (or any other kid for that matter) on how to play video games.

As game time ends I contemplate all this. I drive J to therapy at our local church where our therapist will work with him one on one teaching him tasks like holding a pencil correctly and following three step directions. I come home to work on my various domestic tasks (and online BS). Later Hubby shows up for lunch and says to me "How much did that sting"? Hearing that he is two to three years old cognitively. Of course I've been hearing things like this for how long now? I said "yeah, now do you understand why I'm afraid of putting him in a first grade inclusion classroom"?

No answer.

I'm so wishing it gets easier. I want to believe someday I won't have to hear he is less than half his age cognitively speaking. I want to believe that not only can he cure cancer but that he can play video games too. Is that too much to ask?