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?

Growing up with the word "retard"

On a beautiful sunny summer day in the grilling summer heat we ran, unsure whether we were afraid of her or making fun of her. At the time I would've been approximately eight or ten years old. There was the retarded girl from down the street chasing us, again. She was at least nineteen years old and to my eyes a fully grown woman. We all knew she was retarded by her size, age difference and odd gait. Playing with her would've been weird. So we ran and laughed and ran, all the while she called out "I just want to play" with a strong lisp.

if only everyone had the good kind of Autism,
oh wait they all pretty much suck. Yeah rain
went back to the group home you know.

 I remember the "retarded" kids in my school. You would only catch brief glimpses of them. They had different lunch times and recess times and you would catch glimpses of them sitting on the play ground not playing, sitting in wheel chairs and it was well, weird. The word retarded was accepted then, used as slang as liberal as the "n word" in the south, it was the lingo. Those kids were scary and mysterious, they were the unknown. This was all before the age of inclusion, before "Rain Man" and jokes about the good kind of Autism.

Fast forward two and a half decades. Another sunny Florida day, it is summer and my boys and I are at the park. Three kids, two boys and one girl, show up without parents (that should've told me something right there). They had to be around the age of ten to twelve. Jonathan voluntarily gets of the swing to approach them (which is a BIG deal for a kid who could've been the first kid to swing to the Moon if mommy's arm would've held out). My eyes shone with pride as I heard him greet them over the roar of traffic "hi guys" he said in a cheerful tone. One of the many wonderful things about J is that he's interested in other children (mostly older children and babies, never his own age group). They are all playing on the climbing/netting ladder thing. I see the girl shooting me looks, like "is this ok"? I can't see anything wrong so I continue to push my younger child in the swing but I get the feeling the kids notice something is up and I continue to watch them closely. Jonathan is sitting with them and then they leave. The timer goes off, it's time to leave. I find him sitting in the mulch at the bottom of the ladder, looking sad. I ask him a few questions but don't really get any answers.

ummmm, I'm sorry, give me just a second to digest that.

The next day after OT J is mad at me for refusing to go to sToys 'r' us. He blurts out "get the fuck away from me kid"! I was shocked but I knew where he'd gotten that from (he would NEVER hear the f word directed at him in our household or anywhere else we'd allow him to be). So I say to him "did those kids at the park say that to you yesterday"? and of course he said "yes" in a low pitiful voice, his giant precious moments eyes brimming with tears. Apparently the world hasn't changed that much.

I have to admit, I wanted to drive back to that park just to check if those children and their parents were there right that minute. I was filled with fury and loathing that someone could hurt him like that. I was also aggravated with myself that I didn't stop them when my mommy-o-meter had been going off. On top of that I was shocked that kids of that age would say those kinds of things, (heck my kids aren't much younger and they'll still ask for Dora the explore on occasion). I was watching them they had spoken low enough to J so that I couldn't hear them,  pretty freaking malicious. If I ever do see them again I'm definitely going to talk with their parents (what good it would it would do is a question I'll have to contemplate later because obviously they DO hear that kind of thing at home).

Yep, until it's your kid

The frustrating thing is that I know all the arguments against political correctness and how stupid they can sound to someone without a child or other loved one who may be impaired. I used to feel the same way. I won't even lie and say that we don't cuss or let something less than PC slip in our household. We are after all just human and so is everyone else.

Since I became a mom to a special needs child these memories and experiences have haunted me. J starts in an inclusion classroom this August, in little more than a month. He was diagnosed at two and a half and had previously gone to a private school for kids with Autism, so this is the first time we're facing this particular concern. I hear the horror stories, the poor boy wearing Dora socks. I remember the kid picking his nose in high school. It would seem that many kids with special needs aren't  aware they are being teased but I can't tell you J got that kids tone. He may have not know the words but he got the drift.

God help me, don't I wish I could do this!

I can only hope that the world has changed for the better and that J will be able to punch one of those kids in the face someday (or at least defend himself verbally). I know having J has changed me. I feel sad for the homeless woman in the park that is suffering with obvious OCD ticks (OCD and Autism do overlap sometimes). She translates directly to fear for J, for his future, for his skills and ability to cope with this world. In the here and now I worry about the times I can't be present, the playground at school, lunch time, and all the uncounted minutes in the day when children find the time to be cruel to each other. I know that I have to let him fall so that he can learn to pick himself up. I cannot hover at the playground waiting for the next offense but next time my mommy-o-meter starts going off I'm going to be casually drifting closer.

Autism, first contact

"I'M ANGRY!" As I looked into to J's clear tear filled frustrated gaze this morning I can't say I was exactly feeling compassion. I was feeling aggravation. I TRY to remember to only praise the positive behavior, "good turn taking, that's wonderful shooting". This is our third session trying to teach him how to play Wii (games my five year old can navigate with ease). Each session is like nails on a chalk board. He doesn't want to try. He just doesn't have the dexterity most kids have or the language to express his frustration and he knows it. It's constant hand over hand trying to teach him to use the remote and no matter who you are in this equation it's a grating experience.

Suddenly he turns to me, shrieks something incoherent and throws the Wii remote at my face. I close my eyes and the pain sears through my right cheek bone and upper eye socket corner. Without my glasses I'm sure I'd be blind at this point. I can feel J's therapist waiting, waiting to see if I'm okay, waiting to see if I react correctly, waiting to see his response, maybe waiting for all of the above. I don't know. I pause long enough to explore my injury and formulate a reasonable response. I was having the shittiest Twix moment ever. I grab him before he can retreat. I force him to apologize and ask him if that was a nice choice or a mean choice. When he half coughs/sputters out "mean choice" I make him kiss where the blow landed. I tell him he needs to go to his room and he runs there screaming the whole way. After he closes the door you can hear random bangs and shrieks.

J's therapist and I then discuss the game choice, how the game we've chosen may be to complex. She thinks the game has too much to process. We also need to work out a turn taking system, instead of having his brother peer model. Suddenly she asked me, "are you ok?" The pain had already subsided, for a second I didn't even understand the question because I'd been so focused on the video game selection until she said "do you want to put some ice on that?"  What did linger  on was my embarrassment. I wonder, did I do the right thing? I'm ashamed that I cannot stop my child from hitting me, that I can't even control his behavior to that simple degree. J's therapist suggests we go to the church early today and I could've hugged her.

In all fairness it has been a long summer. Every week something has happened to wrench J's schedule out of check. My hubby had dental surgery, his therapist(s) (as in more than one) got some awful flu bug, tropical storm Debbie and then the fourth (both boys stayed up after ten thirty which is nearly biblical in our home). So literally every week of summer he's had a few days off from his regular schedule not including him not being in school. This week had been particularly hard. We had his last chelation and his regular IVIG in one week. We'd finally finished testing his food allergies which he seemed to be having a very OBVIOUS and negative reaction too. I got really sick Monday, things had just been hard. So today driving to the church I really just wanted to have a good cry. That Wii remote may have been the straw that broke the camels face.



she looked a lot like this.



I pulled up to the church and pulled myself together. As we unloaded J's therapy materials another church patron came in the doors behind us. She looked like a church lady, hair thinning but immaculate, not sweating in the ninety degree heat and one hundred percent humidity, well matching pants suit, home made lace bible cover and books in tow. She calls out to us and pushes her way into the church behind me, "is the pastor in here? I thought I saw his truck". I say "no he's not here". She walks back out to check the parking lot. "Are you doing something with Autism? My grandson is being tested for that. I just noticed your bumper sticker" She says. J's therapist politely redirects her, "mam this is a private session". I walk her out and pull my boots up to my but crack once again to give her what help I can, but today is really the wrong day.  Why do I have to be the Autism first contact, TODAY of all days?



She tells me her grandson needs to having his hearing tested and then he's going to all children's to be tested for Autism, boy if that doesn't ring a bell. I wonder how many providers KNOW when they are sending these children in for "hearing testing" that they dam well have Autism? I ask her a few basic questions. "How old is he, is he verbal"? She answers "he isn't really verbal, at least not in a way that makes sense, if that makes sense". I say "yes, it really does". We talk about parent acceptance and how hard it can be. We talk briefly about the medical side of Autism, mostly gut dysfunction. Surprise, surprise her grandson has horribly runny diapers.

She asked me the one million dollar question (yep that's rhetorical, I'm sure Autism costs go in to the tens of billions or hundreds of billions of dollars these days) what is the connection between Autism and vaccines. Personally I want people to make up their own minds. I explain the two basic schools of thinking and hope with common sense people will come to the right conclusion. Toxins being injected into babies is bad, MMMMM kay. She asks me, "what's in a vaccine?" I gave a few of the more horrible ingredients that I could remember off the top of my head and told to google vaccine ingredients and that would answer her question. We also talked about the number of shots given to children today and how Autism has drastically increased in proportion to the vaccines.

I wrote down my name, cell phone and email address. I told her her daughter could call me whenever, anytime. I told her about the local support group. I gave her some information about the upcoming evals, who should be there and why. I also told her about other local resources to help with early intervention and therapy. Interestingly she seemed so happy to meet me and of course told me that "they (children with Autism) were all gifts from god" and that "she was thankful for people like me who have done this before". I could only say back "it's a challenge, that's for sure". I understand the sentiment and I'm not one to strike out at well mannered church ladies but realistically she has no idea what her daughter is in for. Today, like so many days recently was not the day for sugar coating. I told her that I would pray for her family. I would pray that it wasn't Autism. She gave me at least two hugs and her perfume lingered on me well into the afternoon.

When I go to bed tonight I'm going to pray to NEVER hear from her daughter. 

J's last chelation

We had J's last chelation this weekend. Seemed significant and blog worthy.

One of this first books I read when J's was first diagnosed was Karen Seroussi unraveling Autism and Pervasive Developmental Disorder. Interesting because our library had approximately three books on Autism at the time and I swear the other two were those dam "10 things kids with Autism wish you knew". Which are about as helpful to parents with kids on the spectrum as a poke in the eye.



my first big book of bio-med



This book was a blessing, a real bio-medical treasure trove. It was what convinced me that J really HAD Autism (of course I had to tell the developmental pediatrician that he was wrong before reading that, of course). That book was the first book that made the connection between Autism and bowel dysfunction for me even though I'd been asked medical professionals for over a year and half why my kid couldn't poop. It was my ah-ha moment, or more like my oh-shit moment. Needless to say our bio-medical journey started the moment I read that statistic, 40% of kids on the spectrum had some type of bowel problem (and even that may be vastly under reported). Oh so that explains why my kid hasn't had a normal poop since he stopped nursing at one year old?! Oh so that's why all my google searches kept coming up with ulcerative colitis, and no feeding him more fiber did not help, (thanks worthless pediatrician who didn't test my kid for lead poisoning).

So I went looking for a DAN doctor. Looking up all DAN doctors in the state of Florida, calling for prices, nearly peeing myself at said prices, crying, reading, crying some more. I also began asking for references from other online bio-medical savvy moms. Long story short, we started DAN treatment in November the year of his May diagnosis. One of J's first comprehensive set of labs showed lead in his blood.

"Elevated lead in the body can be detected by the presence of changes in blood cells visible with a microscope and dense lines in the bones of children seen on X-ray. However, the main tool for diagnosis is measurement of the blood lead level or a urine test. When blood lead levels are recorded, the results indicate how much lead is circulating within the blood stream, not the amount being stored in the body.^[2] There are two units for reporting blood lead level, either micrograms per deciliter (µg/dl), or micrograms per 100 grams (µg/100 g) of whole blood, which are both numerically equivalent. The Centers for Disease Control has set the standard elevated blood lead level for adults to be 25 (µg/dl) of the whole blood. For children however, the number is set much lower at 5 (µg/dl) of blood as of 2012^[3] down from a previous 10 (µg/dl).^[4] Children are especially prone to the health effects of lead and as a result, blood lead levels must be set lower and closely monitored if contamination is possible.^[2] The major treatments are removal of the source of lead and chelation therapy (administration of agents that bind lead so it can be excreted).
Humans have been mining and using this heavy metal for thousands of years, poisoning themselves in the process. Although lead poisoning is one of the oldest known work and environmental hazards, the modern understanding of the small amount of lead necessary to cause harm did not come about until the latter half of the 20th century. No safe threshold for lead exposure has been discovered—that is, there is no known amount of lead that is too small to cause the body harm."

So quick paraphrasing, lead is REALLY bad for kids, lead in the blood doesn't actually indicate the toxic burden of the body, chelation is the treatment for lead poisoning, no amount of lead is safe.  J's lead was LITERALLY off the charts. His blood lead levels looked like my three year old worked as an automotive soldier for the last fifty years. So we started chelation, that was nearly three years ago.

We've done approximately one IV chelation per month for the last three years. Normally it doesn't take that long but we had to put J's chelation on hold pretty regularly for financial reasons, it should've take about half the time it's taken us to finish. I'll never forget his first chelation. It was a suppository, that was super fun, especially for a kid who was in the early stages of mega colon, getting regular enemas (again, thank you stupid pediatrician). My husband had taken the day off to help me with this lovely task. We had recently moved into an apartment to get away from the lead in our previous house that was poisoning our son. We had planned on going to the pool for a family outing after the dirty business to keep the suppository in and his mind off of it. So we did the dirty deed and finished getting the kids ready to go to the pool. As soon as we got to the pool (of course) the hubby and I got a wiff of J's odor.

Imagine seeing this in your kids diaper, it ain't lawn art anymore after that

Now let me explain something about Autism poops, they are WEIRD, they have unusual odors, textures, and frequency, trust me there are websites devoted to this topic (see http://gfcfpoop.blogspot.com/) . J's was no exception, so we just assumed he had gone without us noticing. That in and of itself was extremely weird, normally pooping for J required bribes, yoga poses, medication and liquor (the liquor was for me, take a deep breath). So I took him back to the apartment to change his swim diaper.

He had not pooped. His urine just STANK that bad (I even kept the diaper for hubby's inspection). It was another ah-ha/oh shit moment. Each chelation after that we had a similar stench which progressively became less and less pungent. With each chelation we'd see a bit more of J come back, the progress was incremental and slow but sometimes you'd see a jump, a look, a giggle that reminded you what he was in there.

Three years later I stand by that choice to do chelation. It was invasive and it was hard on not just J but our family. We sacrificed our free time (done on weekends), family time, money, sanity and so many other things I can't even begin to list but it was the right choice and I would do it again. All of the propaganda about vaccine's and other parents telling me I'm nuts can't take away the memory of that smell. The criticisms can't remove the times he would cuddle me after chelation. The hateful and uneducated comments cannot revert J's development of speech, (that happily coincided with lead and mercury removal from his body).

I know that chelation isn't the only thing responsible for J's personal growth (we'll call it that so as not to freak anyone out). To say that J has gotten to where he is SOLELY because of chelation is like saying that ONLY vaccines cause Autism. It's never that simple, as is anything in parenting.

Ironically, when we started our path into the Autism world I wanted nothing more than to walk out and never look back. Now that I have some perspective I think it may be too easy to forget. At this point we are working towards new goals constantly. J became unstuck, able to learn as his body burdens lessened and thus we have the luxury of new goals and forgetting. Now I know, I don't want to forget. Hopefully my son won't scorn me as an adult with Autism for my invasive treatments but if he does at least he'll have the ability to do so. I'll take that scorn for his ability to express himself.

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.

I'm exhausted and it's only 10am

Today is woefully Monday. I shouldn't be sitting at my desk writing. I have a million Autism related chores to do. We have chelation this weekend, but can we afford it (I need to work on the budget), do I have to reschedule? How will that affect our upcoming DAN doctor appointment (that I've started making travel arrangements for) and subsequently will all the food allergies we've been testing go to waste? How long can they be in his system to be effectively tested (I need to read the kit again)? I don't want to feed him this stuff more than once, risking regressions, crazy and loud behavior, or our old foe constipation.

My stomach is roiling. I haven't had breakfast because I had to get Jonathan off therapy (at 8am during the summer, yay). Straight away afterwards I had to go to two stores, one for most things, because this store is cheaper and then on to the store with the organic goods (to spend an arm and leg). I forgot my debit card and only made it to one store. I drive home to my neurotypical son telling me "daddy said we're going to crash" and "I'm going to jump out of the car". Really, sometimes I don't know where kids get the stuff they say. I didn't think there was such thing as a morbid Cosby moment. I come home, unload and put away with the groceries by myself; my younger child is also sick and has the attitude to prove it so he isn't helping me unload. I email our landlord again about paying rent late and the air not working. Then I pay the FPL online, check the due date for the next kidney sale and move on.

It's only 10am, I haven't had coffee. I'm already exhausted (maybe due to selling 2/3 of my organs). My body is sore from cleaning yard debris from Debby and bathing two reluctant children yesterday. I have to bake sweet potato cake, applesauce and make almond milk and yogurt all after going back out to the store to fetch the organic goodies I couldn't get to this morning. Plus we are supposed to be having "respite" tonight. At this point "respite" to me would be a daytime nap without interruption. What respite tonight really means is that my kids, my house and I should be clean (not look good but just merely clean), so unerringly that means more work to do. Everything I mentioned before will also have to be clean for in home ABA Tuesday afternoon, (which is after we have to drive out to J's OT appoint thirty minutes away). Plus our dang dryer keeps shutting off without drying our clothes so I have about six loads of laundry waiting in garage in various stages of clean-ish-ness.

Again, I'm exhausted, and it's only 10am.

To relax while I desperately scarf down a yogurt and banana I click over the facebook. I have to admit, I love Facebook. I think it's a wonderful way to connect to other people for those that are tethered to the kitchen or laundry room like myself. Overridingly I'm astounded at the Autism mom's on my FB profile. A few have already had enough get up and go to post a few things a piece. The two I see posting most often are Lin Wessels https://www.facebook.com/#!/linwessels4asd and Lisa Joyce Goes https://www.facebook.com/#!/ljgoes .

Lin has a higher functioning son. She constantly posts links to bio-medical sources, studies and every other Autism thing you can think of. Lin also takes her son, awesome kid with cooper colored hair, to meet government officials. Recently he met Ron Paul, Newt Gingrich, Mitt Romney, Michelle Bachman, Rick Santorum and Mike Huckabee. He asks them questions about Autism. It’s freaking amazing right?!?

Lisa Joyce Goes has a lower functioning child (one of three I believe). She also posts frequent links to Autism related studies and info. but her real treasure is her blog http://thinkingmomsrevolution.com/read-the-blog-here/ . She writes long touching incredibly insightful things about Autism almost EVERYDAY! The things she writes resonate with me but I have the feeling they would resonate with so many others not directly connected to the Autism world, which in my humble opinion is very important.

They both, every single day fight the battle for not only awareness BUT ACTION! They face criticism, ridicule and outright anger, EVERYDAY! My only question is how.................................

Personally I feel buried most days; the constant information on Autism is OVERWHELMING. I'm just trying to get through the never ending "to do" list, slogging away like Sisyphus.

The gods had condemned Sisyphus to ceaselessly rolling a rock to the top of a mountain, whence the stone would fall back of its own weight. They had thought with some reason that there is no more dreadful punishment than futile and hopeless labor.

I wonder how they have the time to read these articles, write these blogs without going crazy, without their house burning down or their kids beating each other to a pulp? On a good day I may have time to read one or two, and that is a very good day. Any blog I write has usually been formulating in my head for a week at least (if not over the last few years). I'm so thankful to these people for doing what they do. I admire and respect them and logically I know they are human beings and parents. Sometimes it is just hard to see it from the bottom of the "to do" list pile.

Its, well now its 11:30 in the morning and I still haven't had any coffee. I think I'll go get a cup.