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!