You say Bitch like it's a bad thing

We have all been there. Parents, feeling like our child has been slighted in some way by a teacher, family member, another child, another parent, come to their defense in the blink of an eye, ready to fight the world in defense of our progeny. It's natural, like breathing. Now- take the mom of a special needs child- spin the wheel and pick any special need you want- I will be focusing on Autism, but it is the same for all. Multiply that hair trigger defense mechanism by...oh let's be conservative and say A MILLION.

Autism mom's are heavyweight champions when it comes to fighting for our kids. We have had to fight with  school psychologists who think they know more about your kid than you do, or disagree with TWO different neurologists diagnoses. We have had to fight with insurance companies to help pay the astronomical medical bills brought on by Autism. We have had to fight for therapies. We have had to fight with poorly trained (at times) school staff who insist on treating our kids as if they are ONLY one big behavioral problem and refuse to be flexible at all. We have had to fight with our MET (Multidisciplinary Evaluation Team) about IEP goals, supports in the classroom and making sure our kids are getting a good education in a safe environment. We have had to fight with ignorant assholes who say stupid things around and or about our kids- and not in an innocent 'I just didn't know" way. Serious jerks who feel it is their  place to tell you that you are not disciplining enough, you should just spank them, could you please keep them quiet, what is wrong with your child?
Then there is the fighting WITH our kids. Fighting to get them to eat ANYTHING beyond the 4 foods they only let cross their lips. Fighting with them to sleep, get dressed, take a bath/shower, do homework, get away from the TV, not run into traffic. It goes on and on and on.

People that know me are always praising me as a parent, they admire my determination, my drive, my constant and loud advocating for my son, my great attitude and how I am so happy in the face of everything that sucks. "Courage under fire" was something someone said to me once- and I almost burst out laughing, not because of the compliment (which it definitely was) but for the fact that I can put on an amazing front, and pull off an Academy Award winning performance on pretty much a daily basis!

It's true- you wouldn't like me very much at all

I carry around A LOT of suppressed anger. Anger at fate for dealing me this hand. Anger that my kid at 9 almost 10 cannot do the things other kids his age are doing. Simple things, like run around at the local carnival with his friends, checking in for cash once in awhile with me.  Anger at myself for wishing he could be "normal" sometimes. Anger at other kids when I see them looking at him and snickering while he expounds about dinosaurs or Star Wars. Anger at other parents who have no idea how lucky they are they don't have to deal with some of the shit I have to- and RAGE at looks of pity.  (I have 2 other neurotypical kids- so I know EXACTLY what is different in raising The Boy) And anger at teachers who can't be bothered- who only include him in general education special projects because they HAVE to, and for not teaching compassion, acceptance and tolerance as every day core values across the curriculum.


To make a long story somewhat shorter- when The Boy moved back to school where we live after 3.5 years at an amazing school, with amazing teachers we had an idea of what to expect. But it has been so much worse than what we even tried to prepare ourselves for. The lack of communication, the refusal to even TRY to keep him mainstreamed, his misery, the lack of expectations FOR him, the ostracizing of him as well as a class of special needs students- who only participate in "specials" and science and social studies- well- let's just say that my Bitch Meter has been in the red most of this school year. And believe me, I am POSITIVE that I am discussed and referred to as "a bitch" and you know what? GOOD!! When you have had to fight as much as I have just to get your kid the acceptance and education he is entitled to over the last almost 10 years,(the last nine months being the worst since kindergarten) then you might be a bitch too! And the sad thing is- fighting for your kid- no matter how calm, educated and respectful you are brands you as A Bitch.  They haven't even come close to seeing just how much of a bitch I can be. I have ranted and raved and cried at home, calling the MET every dirty name in the book, but at the meetings have been in control, and presenting my side in an articulate and educated way, all the while wanting to stand up and yell and tell them what stupid assholes they are. But I don't- it would be counterproductive.
It is fucking HARD to hold it all in there. With all the resentment and anger just below my cool smile- you would think that having to deal with bullshit would be the straw that  breaks the camel's back.  But- the storm always comes later- and unfortunately it is my wonderful husband who has to bear the worst of it.


So is it really any wonder that what seems like something so small can get my hackles up in such a big way? Something like....getting an email from the Special ed. teacher saying the the general ed. teacher wants me to bring in...oh, let's say crackers for a grade wide presentation at school.  And when asked why the gen ed teacher didn't just ask me herself either by phone or email, or BY SEEING ME AT THE SCHOOL EVERY DAMN DAY, she doesn't have an answer. Well of course she doesn't! She is being used as a middle man, plain and simple. Once again, the glaring fact that The Boy is not considered part if the school community slaps me in the face. How else would I see it?  He is being "allowed" to participate in this presentation, and oh, let's throw mom a bone and maybe she can bring something so she feels that her kid is truly included.  Over crackers and a simple email, yes I have lost my tenuous grip on my anger. Petty, stupid, immature- call it what you will. But when I see how the other teachers, students and parents look at my son, the way they ignore me when it comes to class projects, or worse, treat me (and him) as an afterthought, using stupid excuses like "I had the wrong email address" - well, this is THE.LAST.STRAW. 

If you want me to provide something for class, a presentation, whatever, ASK ME YOUR DAMN SELF. The Boy is a part of YOUR class too- he is not just a "special ed student". I NEVER once had this problem in the other school, the gen ed 3rd grade teacher ALWAYS emailed, called or sent a note home if she needed me to do anything. I am at the school every freakin day...I am not hard to get in touch with.

If  fighting for your kids, doing what you have to do to ensure they are healthy, getting a decent education, and happy makes one a bitch- then give me my Bitch Badge and I will wear it proudly.  But if/when the day comes that I really unleash my inner bitch on you- don't say I didn't warn you.

Autism Awareness- NOT a Celebration.

April is Autism Awareness Month. I hear so many people asking how others are going to "celebrate".  There is no "celebration", unless it is celebrating the accomplishments our kids make. Autism is NOT cause to celebrate. It is now a cause for panic- why are the numbers climbing? Why is NOTHING being done about it? 

I intend to use platforms such as my blog, my Facebook page and my big fat mouth to push autism awareness, action and acceptance. I will shout it from the rooftops. I want to make people aware of the epidemic that is Autism. I don't celebrate it. I don't know many who do. I celebrate my son's accomplishments. I celebrate his milestones. I celebrate his amazing little self- but I DO NOT celebrate the fact that he is 1 in 88 children  that are diagnosed with this disorder.

I am not an advocate for a "cure" necessarily. I know many who say "curing" their Autism would be taking something away from them- making them less than what they were. These are adults I have spoken to that have lived with the disorder and are functioning in the world now. But when I talk to the mom who is still changing her 10 year old son's diapers or the dad is holding on to the hope that his daughter will one day make eye contact and say she loves him- I have to say would a "cure" be so bad? Hell- I want a CAUSE or CAUSES pinpointed for the huge upswing in Autism- then perhaps a cause will lead to a cure and so on and so forth.

But in the meantime- I will be an awareness junkie. I will read, research, talk, and write for Autism Awareness, I will shove facts, figures and stories in your face - just in the hopes that you will pass on that knowledge to someone else. This is how awareness is spread- from me to you, from you to your spouse or friend and from them to someone else. I don't expect you to become and expert- I am not an expert - but I know a hell of a lot- and you could learn a thing or two from me.

This is not a month to celebrate. This is a month to learn, and to teach. Parents of autistic children, and adults on the spectrum are a wealth of knowledge that only want the rest of the world to understand

Hate my diagnosis- hate me? I don't think so.

I read a blog today titled "You can't hate Autism and expect acceptance" by Mama Be Good. It was a very well written article that I completely disagree with.

"A parent cannot fully and unconditionally accept his child, but not "the autism."  That's not unconditional.  That's not acceptance.

Why? Children quickly and easily feel their parent's negative emotions and they internalize it, believing that they are at fault for their parent's stress.  While you think you can separate out "the autism" from your child, hating the negative symptoms while loving the child, your child doesn't make such fine distinctions.  He will recognize the feeling, maybe only subconsciously, and he will translate it to "I am acceptable only if I hide part of me.  That part of me is shameful.  There is something wrong with me." "

I think that nothing could be further from the truth. The Boy is awesome, sweet, lovable, smart and IN NO WAY SHAPE OR FORM DEFINED BY AUTISM!  Just as he is not defined by his blonde hair or blue eyes- he is who he is and that is that. I love my son- I love his quirks, I love his honesty and I love his complete lack of judgement for anyone else. I can and will say that I hate autism. On the days he just can't function- where everything is too bright, too loud, too something. The nights when he doesn't sleep, the looks on the kids faces that just don't get him at all when he is talking completely in movie and TV phrases- or meltdowns because "something" is wrong. Yeah- I DO hate autism on those days. As he gets older he is doing so much better. But just because I hate autism does not mean I do not accept my child- nor hate HIM in any way.  I say it all the time- Autism DOES NOT define my son. He is who he is and autism did NOT make him that way. If he didn't have autism would he be a better person?  Easier to love? You can love your child, and hate their diagnosis- it IS possible- and NO it doesn't make you a bad parent.

I say I hate it because it makes life so much more difficult than it needs to be for The Boy.  He misses out on the things that others  take for granted. Birthday parties, playdates, sleepovers, being able to have a conversation, (NOT in movie or TV speak) having independence and age typical skills. Just because I want and work for people to be "accepting" does not change at all how life is for him...and the worry I have for his future.  

I hate the emotional roller coaster that is Autism.  I will not embrace it. I see on a daily basis what The Boy is missing out on- even with all of his amazing progress. And it pisses me off- and dammit I am allowed to be pissed off and hate Autism. This makes me work harder at advocacy, changing perceptions, and helping to change things. 

I don't hate one tiny thing about HIM. Autism isn't HIM. He is The Boy- plain and simple and I adore him.

Me and my boy. Love him- HATE Autism!