So this is where we are now.......

I've been thinking quite a bit about J's transition into public school this coming fall and I think I'm finally coming to terms with it. Oh don't get me wrong, I'm sure when school gets going I'll have a few in person and online panic attacks but for now that lazy summer heat is lulling me into a worriless rested contented state.

oh, yes it's summer, it's to hot to do anything, even worry

I did have an interesting conversation today with J's ABA therapist that I'd like to reflect on. While doing a few hours of in home therapy to work on teaching him Wii and other social skill's. I brought up the question, "Where are we now"?

You see J's journey into/with Autism started around 18 months old. After another round of shots (but that's another blog for another time) he had a big time speech regression. We got his finally diagnosis of Autism at two and a half years old. Which ironically is considered pretty fortunate. You see, the earlier you get the diagnosis, the earlier you can begin intervention, YIPPEE, right.

Well since then J's has had no psychological evaluations. J went to a private school from the time he was three until just a week or so ago. Whatever progress he has made, getting him re-evaluated wasn't in our best interests. Like everything else in Autism, start from the asshole and work forward. The worse off your kid is the more likely he/she/you'll receive a modicum of help. We've kept his diagnosis for just that reason.

So WHERE are we now? (Sorry in advance for the Star Trek reference) but I feel like we're boldly going...

I say this because I'm pretty sure the school board will want to do a whole new set of evals. Generally speaking I love evals about as much as having a IEP meetings or an unmedicated unnecessary episiotomy (go ahead and google images that one for fun, you won't like me afterwards). Yes, they are that fun!

you want to cut my WHAT?

But this time I've got to say, I'm not completely unhappy to do another round of evaluations for him. I'm actually curious as to where he will lie after all this time. So I gingerly posed the question to my trusted cheerleader therapist (whom I love, so don't take it like that). "Do you think he'll be re-diagnosed as Asperger's"? Pretty interestingly she said "no". Ouch, yes, I think you missed a bit of hope, get it before it gets away, smash it with a rock or something. Come to find out as we discussed it further (she's a psychology major) it doesn't work that way. You either have one or the other from birth, the twain shall not meet. Aspergers is like Autism but you develop along the neuro-typical timeline with regards to communication. In other word's if your diagnosed with Autism because you can't talk/communicate plus two of the other deficits from the spectrum (not communication/lauguage) you can't be re-classified later with Asperger's because you've developed language (at least that's how I understood it). Again with Autism, you learn something everyday. The funny thing is, I want to say I've heard of this happening to kids. Dropping the Autism label and picking up the Aspergers label, oh well. 

She told me she thinks J will lose his diagnosis of Autism eventually. UMMMM freaking heart flip! He'll end up with some kind of learning disorder or processing delay. She said he doesn't have the Aspergers traits. He likes people, older children and babies in particular, he looks for facial cues and seems to understand body language and vocal tones even if he doesn't always understand what others are saying.

"mommy, that baby is mad"!

Welllllll, I hadn't expected this but I'm glad I posed the question even if I was afraid of the answer. You see, ironically, I have dyslexia. I had the oddest habit of being able to read backwards and forward which became noticeable right around J's age now. I know that just like with Autism, people with dyslexia range from those who cannot read or write to people like me who flip their B and D's and some times publicly embarrass themselves on facebook by misspelling some simple word, like onion (man I have a hard time with that one, to many o's and i's) . 



a visual aid just in case I misspell it again, you get the idea.



And we'll see, maybe these evals will be the worst ones ever but I don't think so. Hopefully he'll get lucky, like his mom and only have to google stuff to spell it.

ignorant strangers while getting your oil changed....

I really have to wonder how many other parents with kids on the spectrum have the same experiences I do? Because I know this cannot just be happening to me. While getting my oil changed a while ago I took the time to review J's IEP (Autism super mommy has got to multi-task you know). The elderly gentleman next to me noticed and we had a subsequent conversation during which he called J a "burden" because of his Autism. The really interesting thing is 

1. he meant it nicely, I truly believe he meant no offense.

2. I couldn't entirely disagree with him.

3. I wasn't angry at him.

4. I disagreed with him on principal.

Sometimes I think I have "Please talk to me about Autism" sign hung on my face. Have you ever met one of those people that just seem "chatable". Well I'm not one of them. I joke that I'm a social retard but for some reason people do approach me about Autism (with or without my children).

Well here and now, let me dispel that rumor. I do not care to talk with you (you being the generally uninformed public, without a child or other nuclear relative with Autism, someone who thinks Autism speaks is just great), and listen to your general espousing on Autism. As someone who has been in the trenches for the last ( for what seems like all of my freaking life) five years I have a pretty solid standing and knowledge base on which I draw my opinions. You do not.

One of the most interesting things is that people ALWAYS steer the conversation towards the "vaccine debate". Inwardly, I'm biting my cheek and focusing on not letting the innovative curse I just thought up leak out verbally. Random citizen says to me, "I'm concerned about getting/giving my child the "ABC" vaccine". I just nod my head noncommittally. At this point here are my options, tell them the truth (which is what I WANT to do), which would go something like this: "ARE YOU FREAKING NUTS, DON'T PUT THAT CRAP IN YOUR BODY/YOUR CHILD'S BODY, DO YOU KNOW WHATS IN THAT SH!T?"! Or option number two, which is what I always do. I say something true without the expletives that shocks of it's own accord. "Its all to profit driven if you asked me" while shaking my head in the no gesture. Then I tell them the number of childhood vaccines mandated today in a wondering tone of voice, "did you know when we were kids they were only ten vaccines?, and our kids have thirty-six mandated vaccines". Without fail people are shocked.

I have a few problems with these types of conversations.  For one you never know what response people want from you and consequently how they will react with any given response from you. Personally I'm not interested in what Joe average citizen thinks causes Autism (or how to treat it, how to accept it, etc, etc, etc) but that inevitably, this does not stop him from giving me his two dollars and two cents. His vehement disagreement against my ideas poses no value or likely possibility of changing my views. On the flip side, his non personal agreement that vaccines or environmental toxins (aliens, cell phone radiation, whatever he thinks) could be/is causing Autism means nothing to me either, because.... what is he going to to do about it? Its crazy but I  feel I am a Autism representative. I have to look sane and together, this is funny because Autism takes both your sanity and any togetherness you may have had away. I'm sick of being concerned with what the guy next to me thinks about Autism. Frankly, I just want to get my dam oil changed without having what could be a very terse conversation about the center most core of my life with a complete stranger because the Jiffy Lube is out of the most current issue of "People". For me this isn't just moot conversation, this is my child's life, and by extension my life. 

The ironic thing is that people approach me because they suspect. They have heard rumblings, a story here, a news bit there. A cousin friends niece's child had an outrageous fever after a set of shots and was never quite the same. Most people after recovering from the shock of the data, the amount of shots children today are subjected too, nod in stupefied agreement with me. While I may have given them a seed of truth the reality is, it will be smothered by a lifetime of indoctrination. Joe average citizen will go home and forget all the blase conversation that is non-relevant to his life. It's much easier to discredit a total stranger than do your own research, I did. After that, I will go home and add their children to my prayers along with my own children.

Hopefully someday some of the those seeds will take. My sanity act won't be for nothing and some poor child will be spared the equivalent of their own version lethal injection.

Why I think it's ok to pose nude for Autism (and yep, I threw in a Star Trek reference)

I have a confession, I don't read a ton of blogs. I know it's hypocritical that I want people to read my blogs but I don't invest the time to read others blogs (oh well, I'm busy being Autism super mom, gimmie a break). Well when I started this blog it gives you the option to look up/list what blogs you read. So I went a googling. One of the first blogs I came up was: http://www.starkravingmadmommy.com/ and dam that catchy title. I read a few tid bits, thought it might be interesting and I added it. When I started working on my blog I would more frequently read the blogs I had listed and thats when I came across this post: http://blogs.babble.com/strollerderby/2012/05/30/posing-for-playboy-does-not-raise-autism-awareness/ .

Everyday in the Autism world I'm frustrated at the animosity between parents and caregivers of people on the spectrum and this "letter" really illustrates my point. She starts out with "The Warrior Mom part has something to do with the fight against science, apparently." She includes a picture of Jenny pointing at herself with a nasty caption. If you really think she is all around "awesome" you wouldn't take underhanded digs in an "open letter" and post a picture chosen for a demeaning effect.



Of course this could be taken as "look how awesome I am even though I'm totally covered up" but she captioned it as "Jenny, check out my rack, McCarthy"



I think posing nude for Playboy is a wonderful idea, why not? Posing nude for Autism awareness brings in dollars to her organization and gets the word out. Do you think that people just google to google, no, they don't. Our culture is stuck up celebrities asses, people may not agree with her posing for Autism awareness but OBVIOUSLY it will get people talking and googling. After they google her (and her wonderful organization) they may be even unfortunate enough to stumble upon starkravingmadmommy's blog.

She goes on to take digs at her for losing her son at the playboy mansion during an Easter egg hunt. While they are having a Easter egg hunt for children (that is reputedly bigger than the White Houses Easter egg hunt), there are fantastic orgies going on, really? That is her community and support system. I don't know about other people but I would trust my community/family with my child. If I can't see my kid for a few minutes (and lets not forget her kid is doing pretty well, cough, cough) I wouldn't  freak out either.

Then she goes on to talk about how Jenny shouldn't do it because: "On Twitter, you gave your reason for posing nude as “Why should only 20-year-olds be considered sexy? Let’s hear it for the MILFs.” "I’m going to beg you: please stop there. Promoting the idea that women in their 30s and 40s are equally, if not more, sexy than 20-year-olds is a good enough reason."

I mean isn't that stupid, of course when I'm hanging out with my girlfriends the talk is all about aging gracefully nowdays, right? She clearly isn't promoting the idea that women in their 30 and 40's are sexier than women in their 20's but all women want to feel sexy, be desired. I think that was painfully clear.

TTTTHHHHEEEENNN, her next point is:

Please, please, don’t tell us that you’re dropping trou for autism. Because while posing for Playboy may, in fact, garner a truckload of money for your organization, Generation Rescue, it’s not going to do a damn thing for my two kids with autism. Generation Rescue spends an awful lot of time and energy ignoring actual science and promoting an extremely dangerous and damaging anti-vaccine agenda

My first thought is that it won't do anything for your two kids with Autism because YOUUUUU won't let it!

From Generation Rescues background page:

Generation Rescue is dedicated to recovery for children with autism spectrum disorders by providing guidance and support for medical treatment to directly improve the child’s quality of life for all families in need.

Yep that really seems like the devils work. I have read every single one of her books (along with a SHITLOAD of other bio-med books) and follow her in the media. She has said over and over again, "green our vaccines", hell they even did a march with that as the logo!

OMG, it's, it's, it's the phrase shes been saying (well duh)

I mean have you looked recently at what is in any given vaccine, is so wrong to want to take out some of the more disgusting and knowingly harmful ingredients?

Her next rant is: "I know you believe, with all your heart and soul, that vaccines somehow magically cause autism, despite study after study after study saying that isn’t true. But even if it were, autism doesn’t make kids die. You know what does? Whooping cough. Measles. Mumps. Tetanus. All things we can vaccinate against."

WOW, the uninformed-ness, it hurts! Jenny has NEVER stated that vaccines magically cause Autism and those studies, well maybe you should read them, check out a few of the "data collections" they cut out. Many parents in the Bio-med Autism community dispute these studies because of the way they are mishandled and manipulated or just poorly devised. Please, Please, Please cite a study worth a crap and I'll nod along like a good little medicated puppy. I will give her this though, Autism doesn't make kids die, it just takes away their lives, and the lives of the near and dear around them, wait that is kind of like dying, isn't it.

As for the whole whooping cough scare, well both of my kids had whooping cough and LIVED, shocking I know. Take a look see at this little interesting graph too, pretty interesting how death's started dropping about 20 years before vaccines could all save us from ourselves. Its a really interesting coincidence that around the same time as sanitary living conditions and nutrition started improving deaths from communicable diseases started dropping too, hmmmm.



hmmm, interesting, the same thing.



Here is the next BS passive aggressive paragraph:

"Another thing that scares me is that you hold these quackapalooza conferences in which you continue to claim that your son has been “cured” of autism. It breaks my heart, Jenny. You give false hope to so many when you do that. There is no cure for autism. There is therapy. There is a lot of hard work. There are incremental improvements in skills. There is speech therapy and ABA and social skills training and even medication that alleviates the intense anxiety people with autism may feel when they deal with the neurotypical world.

But when you say that “recovery is real,” I’m gonna have to call BS on that, too. I have seen kids develop social skills after being explicitly taught them because they did not learn them by observation. I have seen kids develop speech after years of intensive work. And yes, I have seen that certain diets help some kids"

This is DISGUSTING, "you give false hope to so many", because what more caregivers to people on the spectrum need is your brand of vitriol and verbal diarrhea. I'm sorry but if they were a thousand Jenny McCarthy's it wouldn't be enough! So many people on the spectrum need HOPE almost as much as they need air! I do agree that therapy should be a BIG part of it and that it is hard work but that doesn't take away from the biological side of Autism. Of course then she goes on to advocate what I assume is prescription medication. She also begrudgingly admits that "certain diets, will help some children". Now from my end I think, well if certain diets help why wouldn't probiotics or things to help digestion or cleaning the toxin's out their poor battered little bodies, but that's just the crazy "warrior momma talk" though.

One of the last bits that I take issue with is this: "I have never seen a person “recover” from autism. People recover from the flu, or chicken pox. They don’t recover from an inherent part of their neurological make-up. There also remains the question of whether your son ever had autism."

Literally every person that has a recovered child is told this at some point, well maybe he/she didn't have Autism in the first place. But that is because "They don't recover from an inherent part of their neurological make-up, right? So what other explanation could there be?

You know the thing that kills me is, people would never say to a diabetic. HEYYYY, HEYYYY, HEY that is part of your inherent make up, PUT DOWN THE INSULIN SYRINGE! God help the cancer patient that seeks chemo. Its your body, attacking your body, this must be how it's meant to be. My son had lead in his BLOOD! He had so much lead it was quite literally off the charts. It looked like he slept on the floor of a soldiering factory. Should we NOT have done chelation because of his Autism?

I know in this Autism world there doesn't seem to be any easy answers but I do have one quick suggestion. QUIT ATTACKING EACH OTHER! Seems simple right? I have a dream that one day bio-med and non bio-med moms will be able to sit down together at a table of brotherhood! 

I have never cursed someone, hated them or called them out on a blog for not doing bio-medical treatment, implementing a special diet or anything else related to Autism. I may tell you why I don't think you should give your money to "Autism speaks" but I'll tell you why with factual information and I'm pretty sure I won't hate you if you give it to them anyway. Like any other human being I've made judgement calls on what I thought would help and done my best to do so. At this point in the game all I do is make myself available and try to help. I've somehow come to the wisdom that this is battle enough for every single parent without the vehement infighting. It reminds me starkly of a Star Trek episode from my childhood.

The enterprise comes across a planet with a decimated population, only to learn they are fighting about which color is on which side of their bodies. Of course the crew doesn't get it and neither does the viewer until it is explicitly explained because otherwise you wouldn't think of this "difference" as a problem. Of course, in the end they kill each other off completely, their entire species goes extinct. I hope that is not prophetic.

Here is what I did, I deleted her and I'm venting on my blog. I will continue to do what makes sense for my child, try to help and educate others (as they come to me), do my best to be understanding and move forward with our family's personal struggles with Autism. I will not start a cyber battle, throwing studies at each other and having followers attack the "opposing side". We are all on the same side.

Sometimes I wish I didn't have an internet connection

I just wanted to share my thoughts quickly on the latest facebook funnies.

that's right, the "ZOMBIE APOCALYPSE".

I know this isn't directly related to Autism but I think my sensitivity due to having a child afflicted with Autism explains my feelings on this. A person is a person, no matter how small ~ Dr. Seuss.  

The first joke was funny, but I didn't understand the pop culture stir behind it, so I, like an idiot just hearing about two girls, one cup, set to googling. All because someone told me not too, boy was that a mistake, on both accounts. What can I say, I need to watch the news more and stop getting my news via facebook and yahoo (heck maybe I should start reading the paper again).

Of course after googling, I ended up with the all too hideous realization that one human being and in some kind of drug induced stupor had eaten off another human being's face. Like anyone with an internet connection I got to see vivid and graphic pictures of the victim. Well that explains why I'm writing this and not sleeping at this late hour.

Here are my thoughts

1. why is this joke? It brings to mind the death of a young woman, who killed herself recently.

" Pakistani acid attack victim Fakhra Younus had endured more than three dozen surgeries over more than a decade to repair her severely damaged face and body when she finally decided life was no longer worth living.

The 33-year-old former dancing girl who was allegedly attacked by her then-husband, an ex-lawmaker and son of a political powerhouse jumped from the sixth floor of a building in Rome, where she had been living and receiving treatment." http://news.yahoo.com/prominent-pakistani-acid-victim-commits-suicide-063149605.html

Much like this woman, this person will remain a victim for the remainder of his life. Looking at the horrific damage inflicted upon this pour soul I draw the hypothetical conclusion that no amount of plastic surgery will ever bring him back to rights. So seriously, why is this a joke? People are even pulling pranks about this and of course putting them online, http://www.youtube.com/watch?v=Vt8WRWHCfI4 . (I cannot speak for what is on this video, so please watch it at your discretion). This person's life is ruined (if he lives) and I really don't think that's funny.

   2. Who shared these photographs? Ok, ok, this is the internet, it could've been a fake, but I think its more likely it was a real photo that had been leaked. I'm wondering who did this and why? Was it for financial gain, personal recognition? I can't think of anything people need to see less than this incredible human suffering, that's not even taking into account the graphic nature of the photos.

 3. Why do people do drugs? I'm all for legalizing Marijuana, but this is IN-FREAKING-SANE! Again, having a kid with Autism really puts the screws to you. Responsibility is my middle and FIRST name now. I never was down for killing brain cells for sport but seriously why would you do this?

“The particularly alarming thing we noticed when we started seeing these cases were the extremely bizarre symptoms, the superhuman strength, the hallucinations. With something like LSD, often the hallucinations users describe aren’t horrid things; what people describe on these bath salts are extremely harmful,” said Ryan. “They are seeing monsters, soldiers trying to kill them, and they’re extremely delusional. They see things going on around them that aren’t real, they firmly believe they’re talking to Jesus ... People have taken guns and shot at houses because they were hearing voices inside. There have been murders associated with bath salts, a man cutting into his own body to take out wires he thought people had put in there.”

http://www.thedailybeast.com/articles/2012/05/29/did-bath-salts-spark-miami-s-gruesome-zombie-attack.html

Is this one of those lets see how shit-in-my-pants-scared I can make myself,? Well, if that's the case, save your brain cells, save up and buy a ticket to Halloween Horror nights.

I have to say it greatly disturbs me to see people making light of this kind of human suffering. This type of violence is above and beyond what we've seen before in the mainstream media in this country. It's pretty shocking how quickly Americans transitioned from horrified to hunky-dory and well shuck's let make a mock motivational poster about that. JMHO

Well really, don't you think this is funny?

The invisible wheelchair

As I may or may not have stated, J is six turning seven this fall. In many ways he is indistinguishable from the "NT" peers. He is in most ways physically very healthy (beside the constant can't poopness we've battled since he stopped breastfeeding at one). He is in the seventy fifth percentile in weight and in the ninetieth percentile in height. He has tan skin (year around), beautiful shiny gilded hair and large clear greenish hazel eyes. In short, I'd say he is a few neuron connections over or under depending on how you look at it, away from a modeling career. I'd like to be modest and say "forgive me, this is written in a mothers hand" but I've been told (with out soliciting) this from others. In a way this makes us lucky. I can send out pictures of those giant precious moment eyes and they do get results.

J's eye's

Here is where it hurts us. Today we traveled to the local splash park. Every time we come to the splash park I have a vividly painful memory. In the not so distant past, on a warm, want-to-be autumn day (this is Florida, you know) I'd taken they boys out for an mid-morning frolic. As usual you had a cross section of socioeconomic backgrounds at the splash park. You always see kids splashing in their under ware while their "parents" flit in and out of the periphery. You also see kids just learning to walk, wearing sunglasses, wide brimmed hats, swim shirts, long swim trunks, swim shoes and enough SPF 80 to cover a silver back mountain gorilla.

Don't forget the SPF buddie :)

Well, one of your classic helicopter mom's was diligently hovering over her son who was in full upper class SPF. Of course, being super prepared and everything she had brought toys for her future doctor, lawyer, ad executive (insert white collar degree here). So consequently I had the pleasure of R-E-P-E-A-D-T-L-Y returning the toys when J would snatch them up. I personally don't know why people bring toys to a crowded public play area if they don't intend to share them with other children but, I digress. Of course type "A" mommy would flag J down and retrieve said toy. I don't know about you, but I HATE other people reprimanding my children. I am his parent, that is my job. I never step in unless the other children parents are unavailable or unwilling, which I clearly was not. So after several session of her "fetching" and me returning and repeatedly reprimanding J, I got sick of this and blurted it out. "Just so you know, he has Autism". I guess this is where my "don't ask, don't tell" policy bites me in the ass. I don't tell people unless something is going on that makes J's Autism heartily apparent. I'll never forget her response, "I'm so sorry". I bet she had a lesson in Autism awareness that day, unfortunately so did I.

Lesson's learn via Autism

to, well you get the point

I guess since it not glaringly obvious that J has Autism pointing it out to people is even harder for me. I'm torn between the idea that someday he won't fit in at all and what will I (and he) have to deal with then and wishing I didn't have to enlighten people now. In this way, I wonder if people with children with more obvious impairments have this aspect easier? I'm overwhelmingly sure people will say stupid things to you no matter your childs level of disability. I am in no way demeaning people with children with lower functionality struggles, please understand that. 

It makes me think of a child who is wheel chair bound, standing, at a track meet unaided. Inevitably you are going to have someone challenge him to race.