Power?

When Child 1 was first diagnosed, the pediatrician told us, in a nutshell "he has PDD-NOS. It's on the autism spectrum but it isn't autism." As a result, I spent the next 9 months in a complete state of denial. "He's on the autism spectrum but he doesn't have autism," I told myself. This meant that I didn't need to investigate ABA, or any kind of treatment options that the school district wasn't offering me. At my first IEP meeting, I happily accepted everything. I had no idea what I was doing, and after all, these guys are the experts, right? So, great! This nonverbal 3 year old, who is still in diapers, should attend a special day pre-school for 3 hours a day, and that's all. What the hell did I know? I thought I did good for him.

It was only just after he turned 3, and started scripting, that my denial was shattered. He was obviously autistic, and I needed to get off my ass and figure out a way to help him. So, I hit the "books" (internet), and found him a program. I found myself an advocate and I convinced the district to make it all happen. We started our home program when he was 3 3/4 and there were immediate results. Things got better.

Today he's 10 and he's awesome. Totally verbal, super smart, (almost) always happy, and the sweetest, kindest, gentlest person you could ever meet. Every teacher or tutor I've ever had has told me "I wish all my students were like him." He's a joy to work with and to be around, and I can't take credit for all of that, it's just his nature; it's how he was born.

I know that my experience with autism has been much easier than that of some of my friends' experiences. He has no behavioral issues, he has no meltdowns, at this point he has very few sensory issues; he's actually much easier to parent than his typical brother. I also know that I am lucky that this is my experience. I am very much aware that many, many other parents have not had it this easy, and never for a second do I take this for granted. I consider it, now, my personal responsibility to give back to the autism community as much as I possibly can. So that my experience can help others; so that other parents won't feel so alone. I do this online as well as in "real" life, where I help parents in our district navigate the system and get services for their kids.

Here in cyberspace, however, there’s a war going on. It’s about autism parents vs. autistics, and ironically I’ve seen some of the worst, most patronizing behavior coming from my fellow autism parents on behalf of autistic people. I’m not interested in participating in a political war, though; politics frustrate and anger me. I can’t even watch the news without getting pissed and I certainly have no desire to fight a cyber war that has no end in sight. My instincts in all of these cases tell me to find a middle ground, but that’s never going to happen if I’m the only one who thinks that.

My friend Elise who blogs at Raising Asperger's Kids recently wrote "one thing I do notice in the autism community is that someone somewhere decided who the leaders are and who they are not." I know who the leaders are, and I am not one of them; the “leaders” have shunned me. I'm not politically correct enough, maybe? I'm too honest about facts and feelings? That makes sense; people don't like to hear the truth all the time, it makes it harder to maintain a morally superior distance from the rest of us. I don't even want to be a leader, although I have tried. I tried to help, I tried to create a dialogue, and it was an utter failure, but you know what? That’s okay; I'm okay with that, because it turns out that I don't have the energy or the interest to constantly argue about something, knowing that I can never win.

This war will not be ended by people talking about each other and not to each other. Long, well written blog posts which appeal to that particular readership are all well and good but unless these two different sides start talking to each other, this shit will never end. And I tell you now that I'm not interested in talking about this unless I'm talking to somebody, so unless somebody wants to directly engage me in a dialogue, you will not be hearing from me about this issue again.

My job here is not to “fight,” but to support. I want to reach out to as many autism parents as I can and say: you're allowed to grieve, you're allowed to be angry, you're allowed to have feelings, you're allowed to say "this sucks." Because I will try to help get you through this. And I will give you as much free advice about navigating the school district as I possibly can. And I will give you a place to speak about how you're feeling, free from judgment, free from criticism, free from the "thought police" which tell you that your feelings are bad and you should feel bad. Life is messy, it can be ugly and mean, and to be told that you must consciously repress your feelings about it is just wrong.

In conclusion, I'm going to quote my very good friend, Dawn, who sums it up perfectly:

In a world in which we are facing constant judgment from Neurotypical parents, to hear we are now facing it from our own community as well is exhausting.... I'm tired of being told i am a crappy parent because my child doesn't "behave" as others think he should, and i'm tired of being told i am abusive and a crappy parent if i don't say the right words.... honestly--i'm done with this discourse. Imma worry about my small family group and the health and well-being of my own kid. I no longer have the desire to be held accountable for the crappy parents other people have had. I am not perfect. and while i hold my son and myself to difficult standards of excellence, i do not expect perfection. And i'm not going to argue with someone if i fall short of perfect-- as humans are wont to do.

I've got your back, Dawn, and I know you've got mine. We're in this together, after all. I wish other people would realize that, too.

Edit: I'd like to add that if anybody has a problem with anything I've said, please tell me. Let's talk to each other, not about each other. If you don't want to put it in the comments, you can email me at jillsmo at gmail.com

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Bath salts? Really?

I've been reading about bath salts; apparently they've been a craze for a while now. Most of us had probably never heard of them until the Zombie apocalypse started in Florida, but now we have no choice but to be all too much aware of them.

I've also been hearing stories about other things people, mostly kids, use to get high, like eating fucking laundry detergent... and I think WTF???? Laundry detergent?? BATH SALTS???? Kids are that desperate to alter their consciousness that they'll use any old shit they find lying around their house, just because it's accessible? REALLY?? In my day we raided our parents' liquor cabinets, apparently that's not good enough anymore.

I would rather buy my kid a bag of weed than have them snort bath salts. I know that will probably be a wildly unpopular opinion, and will create discussions of parents buying their kids alcohol as long as they drink it in the house, and you really want to say that those people are stupid, but BATH SALTS. Fucking bath salts!!!

I don't want my kids eating laundry detergent because it's legal and accessible. Pot, although illegal, is safer than fucking laundry detergent; and more than anything, I want my kids to stay alive. So if buying them illegal drugs that should be legal is the key to keeping them alive? Fuck it. I would do that.

(To the person in the Homeland Security office who reads my blog: I HAVEN'T ACTUALLY DONE THIS, IT'S ALL JUST HYPOTHETICAL!!!!!!!!)

EDIT: Okay, I'm told that the bath salts people snort and smoke to get high are not the same bath salts that you buy at Bed & Bath, it just has a misleading name. The laundry detergent thing is still totally valid, though!!!!!

EDIT2: Apparently kids also separate the alcohol out of hand sanitizer and drink it. There is so much I don't know....

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Black and white is for cookies only

The blogosphere is a war zone, the players are autism parents vs. autistic adults, and you have to pick a side.

You can either believe that disabled people are burdens and tragedies or you can believe that disabled people are capable of living happy and fulfilling lives. You can acknowledge and accept the difficulties that autism parents live with every day or you can believe that struggling with autism means that you don't actually love your child. You can't mourn the tragic death of George Hodgins and feel sympathy for his mother at the same time; you just can't. This is a black and white battle and you need to choose which side you're on.

"You're not like my child. You can write. And have a job. And friends."

"You're abusing your child by giving him/her ABA."

"You're a fake autistic/a fraud/a poseur/the enemy of me and my child."

"Grieving because your child is autistic makes you selfish and is not okay."

I'm sorry, but that's fucking bullshit, and I refuse to participate in it. I will not pick a side, because none of this is black and white. There may be extremists on either side of any issue but as like most issues, the majority of us lie in the middle; in the grey area.

Here in the grey area, I know that my experience with autism isn't the same as your experience with autism, but that doesn't mean that my experience is less valid than yours, or that yours is less valid than mine. It just means they're different, and while I have not walked in your shoes, I can still be sympathetic to your feelings; and I expect the same from you in return.

That doesn't just apply to me, of course; that's for all of us. And of course this war didn't start recently, it's been waging for years; but until and unless we all... all of us.... come to terms with these facts, this war will never end. And what good is it doing for our kids? For the adults? For the adults that our kids will be some day?

My friend Rhiannon, who blogs at Unhandicapping the Disabled Life (and who is so much better with words than I am) says: "You can address those with disabilities as entities of value in and of themselves, and for themselves, or you can address them as if their value only exists as contextualized by the part they play in the lives and world of others around them. In either case, there is the issue of how you make those judgements. Do you judge a person, a life, and a place in the world only by its disadvantages, or only by its advantages? Do you judge things for what they are, or in contrast to what they might otherwise have been? Or, perhaps, can we be as realistic about the life of someone with disabilities as we can about any other life, and accept an honest dialogue that reflects the totality of the human experience. That is, after all, what everyone involved in this debate IS.... a human being. It doesn't matter if we're talking about a teacher, aid, therapist, doctor, parent, sibling, or anyone else in the support system (or lack thereof) that, directly or indirectly, is involved in the life of someone with Autism.... even that stranger in line at the store. The fact is, we're all human, and we're all in this together. Not for better OR worse, for better AND worse."

I added the emphasis on that last part because it perfectly sums up what I'm (lamely) trying to say. This "black and white war" does no good for anybody involved, and so I'm staying in the grey area. It's here that I get to both sympathize with my autism mom friends whose experiences have been so much harder than mine, and who tell me that it really is like a battlezone sometimes, and I can learn from my autistic friends who have made my life, and my son's life, so much better just for having known them. I'm lucky that I get both sides and if you're insisting on staying just on one, I feel sorry for you.

The world isn't black and white, and yours shouldn't be, either.

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Autism and vaccinations: MY opinion

I thought I'd go and get all controversial on your asses, because why not, right? Actually... the only reason this blog exists in the first place is for me to get shit out of my head and into some other form, and this kind of post is just the thing!

The first thing I need to mention, and stress again and again, is something that never seems to get mentioned whenever this debate comes up. And that bothers me, which is why I'm writing this post. I've seen people screaming passionately at each other, that they know the answer about what autism "is," but I haven't seen anybody ever mention this: There are at least 2 different kinds of autism. There is Infantile Autism, where they are born different and there is Regressive Autism, where they develop normally until about 18 months and they suddenly lose all the progress they've made. The second kind is often combined with some kind of gastrointestinal issues, although they both can be. Why doesn't anybody ever mention this? Well, I don't really know, maybe a lot of people do and I've just never seen it; I don't read about this topic very often because of all the emotional strife it creates for all involved. I think we tend to assume that "our" autism is "the" autism, and anybody whose experience has been different surely isn't talking about anything we can relate to.

So! Having said that, here is some more:

Do I think Child 1's autism was caused by vaccines? No, I do not. Child 1 has infantile autism; he was born that way. He missed pretty much every single milestone there was to miss, except for sleeping through the night, which he did at 3 weeks, and he never had any adverse reactions to any of his shots. He also does not have any of the gastrointestinal issues that are so common with autistic children. And for the record, both of my kids are fully vaccinated and up to date on everything.

Do I think there's a connection between vaccines and autism? Yes I do, although it would be more clear for me to say I think there's a connection between one type of autism and vaccinations. Because even though my experience has not given me any personal evidence, I've heard way too many stories from parents that sound the same: "He was fine until the day he got his MMR, then he developed a fever that lasted for a week, he lost all of his language and he's never been the same since." There's a connection there. No, I don't know what it is; maybe it's some combination of a genetic pre-disposition and the stuff in the shot, I can't tell you more than that, I just very strongly believe that there is a connection.

I was talking about this post on Facebook and struck up a conversation with a mom who does believe that her child was harmed by vaccines. I asked her to write up her experience so that I could post it here:

From birth we had this beautiful alert child who was content to be cuddled and was very easy to live with daily. He was a engaged child that wanted to be cuddled and played with constantly and he preferred even when sleeping to be with us. We all thought it was funny that everyday he and his Daddy would nap together (son sleeping on Daddy's chest) on the couch. At an early age he started to talk and we would go down the road and he would point out and say " mmm, I cream or Izza Izza". He would get so excited by going to Kindergym and singing the songs with the other child and was easily the entertainer when we went to family parties.

Our journey into the solitary world of Autism began around 15 months. After our child had his vaccinations at 15 months of age he developed a high fever, malaise and cried a lot. The site where they gave the MMR and DTAP were swollen, red and hot. After a while he recovered but we started to have issues with him having repeated illnesses such as ear infections, yeast infections and upper respiratory infections. Overall he seemed less responsive and would sit for hour playing by himself and stopped making eye contact. At 18 months like a good mom I took him back for his check up and he got all in one visit Hepatitis B, DTaP, IPV and Varicella injections. Again, by the afternoon, he was cranky, cried inconsolably and ran high fevers with the same skin responses. It was at this point in his life that he started to lose speech ability, started becoming obsessed with playing with things that where not toys instead of his toys, such as the tubing on the vacuum, and he would put objects in and then let them roll out, over and over again. We took him to our local ENT and he recommended having his tonsils removed and did an emergent referral to our Early ON for his loss of language. I can still remember this 6 month time of his life as clear as it was yesterday because it is like we lost him to another world where we could see him but he was only really with us physically. I can say that 6 years later things are better but everyday still breaks our souls when we see how affected he is socially by his differences.

How many of you reading this, right now, can say your story is similar to what I've quoted above? Tell me in the comments, because I have a number in my mind and I'd like to see how accurate my guess is.

My autism story isn't nearly as dramatic: As a baby he hated being around too many people who were talking at once and would cry until I removed him from the situation. He made great eye contact, though, and liked to be held. He babbled on time but crawled and walked late, and when he wasn't actually talking by 18 months I started to worry (actually I started to worry from day 1, but you know what I mean....) The rest, as they say, is history.

Am I suggesting that parents not get their kids vaccinated? OH MY GOD NO. Absolutely not. Like everything in life, you have to play the numbers; weigh the consequences against the risks, and the odds of your unvaccinated child getting measles is higher than the odds of your child regressing because of a shot. And in the end? Measles can kill; autism cannot. I'd rather have an autistic child than a dead one; and so would you.

Then what's my point? My point is, as follows: In my opinion there is enough anecdotal evidence out there to make a hugely convincing case that more research is necessary. Nobody can ever make a truly rational argument that "not trying to learn more about something" is ever the best way to go, despite what you predict "might" happen as a result. Hell, maybe Regressive Autism isn't actually autism after all, it's another condition entirely that mimics the symptoms of Infantile Autism, in which case OKAY! That's what that is! So let's find out.

Say what you want about Andrew Wakefield, and we all know there's a lot you can say about him, but when he inspected the stomach cells of the children in his study, did he find the measles virus in there? Probably somebody is going to tell me that he didn't, but honestly I'm not interested in all the extenuating circumstances involved, or however else anybody wants to talk about how horrible a person he is. I'm not his biggest fan or anything, I just want to know if the measles virus was actually found in the stomach linings of those children: some have said yes, some have said no. Wakefield raised questions and in my opinion there have yet to be any conclusive answers. Frankly I'm tired of hearing about the studies that once again "prove" there is no connection between the shots and autism, because how do you explain that to the mom I talked to? How do you explain to her exactly what happened to her child, if it wasn't the shots? You can't. But you also can't just dismiss her personal experiences simply because yours were different. There is very little science knows about what causes a child to regress for seemingly no reason, and this mom (and many others) want answers.

And in the end, while our stories stories are different, what's most important is that regardless of "type," the end result is usually the same: people living with a complex developmental disorder significantly affecting verbal and nonverbal communication and social interaction, emotional regulation and sensory processing abilities. It is this similar "end result" that makes us fight about this so much, after all, if you didn't follow the same path that I did, how can you possibly be in the same place I am? (I don't really believe that, I'm just saying it as an example). But we are in the same place (more or less), and that's why this issue is so volatile. I'm not saying I have any answers, I'm saying there are too many questions that need explanations, and until we can all be satisfied with concrete scientific results, that can give people like my friend up there an answer to her questions, this debate will go on and on and on and on.

As autism parents and autistic people, we need to get past this divide. We need to move past the Wakefield debate and just accept that our experiences have been different. We need to stop fighting with each other and start working together, because despite everything, we have a common goal: the happiness and well being of every autistic person, regardless of the journey they've taken to get where they are.

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