Going to the pool with Autism

I am that mom at the pool,  the one who rarely takes her eyes off her kid, even though he is 11 and can swim. The one who seems extra nervous and calls her son over frequently, trying not to draw too much attention.  What you don't hear is me reminding him to respect personal space, not to be too rough, not to grab or splash if he's been asked not to do so, or to just chill out.  

I am the mom who worries about what the other kids are saying to him, and his reaction- moving around pool side depending on where he is at,  making me look like the "helicopter mom" that can't leave her kid alone. What you may not understand is that my son's "quirks" and misunderstanding of social cues can make  him a target for ridicule. Even good- natured teasing will confuse him, causing him to get upset and could cause a meltdown.

I am the mom that is on high alert, because my son gravitates towards kids much younger than he is. An older child attempting to play with these younger kids draws the attention, and possible incorrect assumptions about his motives. So I am always having to keep an eye out, reminding him frequently to not be too rough, and isn't there some kids closer to his age he would like to play with?   I understand why he prefers the younger kids sometimes, and will gladly tell you to ease any concerns you might have.

I am the mom keeping an eye on not only my son, but the other kids, whose teenage babysitters are listening to their iPods, texting, or just enjoying the sun, with a cursory glance at their young charges from time to time. What you don't know is what sometimes seems like playing or harmless rough-housing is actually an issue that needs to be addressed, and a good majority of the time, it is not my son instigating it, but not moving away from it either.

I am the mom who feels bad telling her 11 year old son that I would love to play with him in the pool, but doesn't he want to hang out with the other kids? He already deals with so much, I don't want to add to any teasing because he is hanging out with me. The kids are old enough now, that I can't play with all of them like I used to. What you don't know is while my son is  11 years old, he has a developmental delay that makes him more like 9 years old, and playing with me is fun and safe.  I still do play with him, of course and hope he won't be made fun of later.

I am the mom who won't hesitate to chastise an adult, whose child my son knows makes mean remarks to him, and to their mom, who not only laughs, but perpetuates the teasing. I do not tolerate adults who know better acting like this. Your child's behavior and the way they treat my son, and others who have differences is a direct result of your immaturity and lack of compassion. It's people like you that make my job of raising and spreading awareness that much harder.

I am the mom who is beyond thrilled  when other kids are including my son in their games, making him a part of the group and just being 11 year old boys playing "Sharks and Minnows" at the pool.  What you don't know is I am probably holding back tears, and quietly celebrating what you take for granted.

Just wanting to fit in

Watching The Boy try so damn hard to make connections, belong, and fit in is physically painful for me. When he was younger, I could step in, help guide him. Now that he is older, playing football and being increasingly involved in peer to peer social situations that don't always involve an adult presence, I fear these differences are going to isolate him and batter his self esteem. To other's he is sometimes "weird" and "annoying". But he is only doing the best he can do in what must feel like an alien world.


Football is my way of trying to help him to belong. It's not his passion, and it is evident on the field. He does try, don't get me wrong. But he doesn't LOVE it. Dad and I have told him REPEATEDLY and emphatically that if he doesn't want to do it- it's FINE! We won't be disappointed, mad or even upset. Getting a kid on the spectrum to try new things, and step away from the video games is like pulling teeth. Just the simple fact he completed the whole season last year and is attempting another year is absolutely amazing, and awesome and I couldn't be happier! But I don't want it for me, I want him to want it. And if he doesn't, well, OK then, let's step away and find something else. But he insists he wants to play, promises to do better and it breaks my heart. Because no matter what he tries, no matter where his niche is, be it sports, music, art, WHATEVER- I am proud of any effort. And the last thing I want is for him to feel that if he doesn't do it I will feel like he failed.


I read all sorts of uplifting articles, "Teen with autism wanting to get fit finds success on football field", "Autistic football player an inspiration to many", "Autistic football player’s dream comes true" All very uplifting, inspiring stories. I love to hear these success stories, but have accepted that The Boy will probably not go that far, at least in football. But the last thing I want him to be is a "mascot" or a charity case, or a way to make an organization look good. "Look at us, we have an autistic player, aren't we great". Give him a chance, coach him, treat him like the rest of the players, INCLUDE HIM, and help the other players and coaches understand him. He will probably never score the winning touchdown, or maybe he will. The only way to know for sure is to give him that chance.


Every parent of every child has their own dream for that child. My dream is inclusion. I want my son to FEEL included. I want him to FEEL like he is valued and there is a place for him. So as long as he is making it to practice every day and putting in effort, I will expect the coach to FIND that place for him. Doing anything less is doing The Boy a disservice. I will never try and tell you how to coach football. I will tell you how I think you can coach The Boy, and how it can help not just you, but your team as a whole. At this level, every player is valuable and there is a place for them all.

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.

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!