Responsibility's A Mother..

~"Growing up is losing some illusions, in order to acquire others"~Virginia Woolf

     

      Back in April, Lily had every intention of writing a post for my blog.

"I want to write a post like Sammy did! " "Sure.  What are you going to write about?" "I don't like that people think that Oscar is weird.  He's a great guy!" 
 "That he is."
 "I know-right?..So I think I will talk about that." 
 "That sounds great. Let me know when you have something." 
"O.k. Mama."
Obviously, she hasn't gotten it done yet..and really?  That's o.k. She's got other things on her mind..bigger fish to fry.   Middle school is on the horizon-and she's restless. It is so hard to be ten.  Part of her hangs..clings..desperately grasps on to childhood-tooth and nail, while the other part is yearning-EAGERLY yearning- to be a full fledged adult where no one can tell you what to do.  She's stuck between a rock and her mother.  I haven't told her yet that there are ALWAYS going to be people willing-eager even, to tell you what to do. The only perk you get as an adult is choice-and even that is questionable. .Sometimes I want to tell her in a soothing yet understanding voice, as I smile benevolently upon her,stroking her hair "Growing up is hard"...but on the inside-there would be a shrieking almost maniacal voice screaming-"Being a grown up is even harder. DON'T DO IT!-RUN!!" ..*sigh* But that wouldn't be very responsible of me now-would it?

  I fully admit it-I just do not like responsibility. Oh, there was a time when I liked it just fine..  Getting my first apartment, holding a job-deciding what and when I wanted to do things. It was glorious! ..Yup, that is when me and responsibility were close-tight-friends even!  But then, I had kids...and instead of being this quirky kind of fun pal-responsibility took over-fully enveloping me (kind of like a straight jacket) to the point of me not knowing where I ended and responsibility began. I didn't notice it at first.  I was so busy with the care, feeding and growing up of my four kids-that I wasn't really paying attention. Responsibility took me down-and I didn't even notice! But, now that they're older...well... We've been at odds with each other-Me and responsibility.  Arguing back and forth..pushing against each other in some sort of grand pissing match that for now-it always wins.

."I don't want to go to the IEP meeting!" (if my brain had feet they would be stomping) Responsibility ( Sounding-oddly enough, a lot like Patrick Stewart) will say.."But if you don't go-how can you be sure that they will get all that they need?" "FINE! I'll Go."

"I don't feeeeel like doing the laundry, walking the dog, grocery shopping, paying the mortgage..I'll do them later!!!" "You always say that, and then stress out when the laundry piles up, the dog poops on the floor, the kids run out of snacks, and the mortgage company adds a late fee..."  "Fine(stomp) I'll do it now." 

"Oh crap..I really really DON'T WANT TO go to her first (or any) therapy appointment with her! No! I am NOT going! "But you know how important it is to get her the help she needs." "But she doesn't need me there to get help!" "You know that she does." "UGGGGGGG..you know he's gonna gently point out (in soft tones and psychobabble) the massive mistakes I've made!" "Probably." (yeah,sometimes responsibility can be a douche)

  Like Lily, I'm feeling restless..ready for the next big thing, chomping at the bit-all the while clinging to what I know-yet fighting it at the same time. The ground is shifting and I don't know where to put my feet. *sigh*  I have got a big case of "I.M.S." (irritable mother syndrome). Sometimes , when I'm still...I fantasize about running away from home-"Due to her sudden disappearance, the role of "Mama" will be played by (insert name here)..But then something happens...one of the kids will come rushing in to announce something exciting or wonderful -so exuberant to share it-and it HAS to be with me-ME!..Or Oscar will walk by and brush his lips across the top of my head for no reason other than love.  These delicious tiny moments that I would not-could not trade for anything-.They keep me steady..and responsible...even when I don't really care for the responsibility of it all..

"Sometimes I find it really hard to like you, Responsibility!" "That's o.k., I'll ALWAYS look out for you anyway, Kathleen." "Oh- shut up!"  "No."..."You know, you aren't always going to win! The kids are going to get older-You won't always be able to tell me what to do!" "We'll see." "Yes we will! You just wait!  When I'm eighty-I'm buying myself a Harley..what are you going to do then?" "Keep you company while you wait for your broken hip to heal." *sigh*....

  

Confessions of a Worrier mother (four years later...) Wright is Wrong..

~"Charity creates a multitude of sins"~Oscar Wilde

 I have been blogging for almost five years. The whole reason that I started blogging was because I simply could not fathom how autism was being portrayed in the main stream media. I remember thinking"This isn't my experience-this isn't the way our life is..there has to be other families like mine!"  Thankfully, I have found many-both on and off line. This is a slightly revised post from 2009. It was my rebuttal to the horrible video "I am Autism" that Autism Speaks had put out. It scares me that four years have passed-and still, the idea that someone can speak so openly and horribly about human beings is considered (by many) acceptable. Four years later-and we need to do better.  There needs to be a lot more listening and a lot less judging in the neuro-diverse community. 

  It started with a blog post on acceptance. Which, as per usual-turned into an argument.  I myself made a few comments. One in particular was in direct rebuttal to something a parent said. They made the comment that 1.5 million people in the U.S. SUFFER from autism-I replied with the simple statement-"my kids don't suffer" In turn I was told that I was one of the "lucky ones"-and then given a detailed description of all of their struggles. I never implied that my children didn't struggle- I simply stated that they didn't suffer. They were right however in one aspect-I am lucky. 

 Three of my four kids are on different parts of the autism spectrum. They work very hard to try and navigate a world that doesn't always make sense to them. Every day poses new challenges. Yet, they face them-because I ASK them to. How staggering is that? Being a mother is a powerful job-definitely not for the faint of heart. I take my position seriously. Oh, I have made many mistakes-which I no doubt will hear about in years to come. But I am learning. I think the most important lesson has been that children become what you tell them they are. All children, no matter what their ability. It is for that reason I talk about acceptance and love instead of laundry lists of symptoms.  My kids have disabilities, they are not broken. They are not empty shells, they don't need to be "recovered". They are right in front of me (most of the time asking for things) I had best make sure my words have substance and meaning. Because those are the words that they will carry with them for the rest of their lives. I am their mother. That is my job, my responsibility, and privilege.

It always astounds me when I am told things like "you are one of the lucky ones" or "your kids aren't really autistic". Astounds me. What I find equally mind blowing is the thought that because I accept my children, accept that three of them have autism-I don't do anything to help them. Nothing could be further from the truth. I just don't have the need to advertise the things that we have done, in such a way as to garner sympathy or admiration for myself. I'm a mother, and I'm just doing my job. It is not about me. It is about my children. Yes, we have worked really really hard, but my kids...they have worked harder. I might do the steering, but the driving is all them. They are incredible human beings-all four of them. I am blessed.

That's not to say I don't have days when I want to run away from home. That however, has nothing to do with autism ..but more to do with the fact that I have four very active kids, three hyper dogs, an overly affectionate cat, a leaky roof, faulty electrical wiring..and a myriad of other things.(sigh) I think that you truly know that you're a mother when a private and secluded bathroom of your own is your secret desire.

I am not a warrior mother. I am more of a worrier mother. I worry about getting my kids the appropriate services, I worry about their education, I worry about their needs being met, I worry about discrimination, I worry about them going out into the world as adults, I worry about films like "I am autism", I worry about the power of people like Suzanne wright and her awful words, I worry that they do not give voice to the people who do have autism...I worry that this will somehow demonize my children-who will always have autism, I don't however worry about "recovering", "curing", or somehow defeating them. I don't worry that my children view themselves as somehow broken and needing to be fixed. I don't worry that they see themselves as somehow less, or as a burden. They know that they are cherished, that they are loved, that they are different-that different can be hard, but it isn't wrong. I recognize that my children, all of them, are human beings. Deserving of the same respect, treatment, inclusion and acceptance as is any other human being. I recognize that it is my responsibility to try and make the world a better more accommodating place for them. I recognize the importance my role as their mother is. I think about all of this and can say with certainty, yes, I am one of the lucky ones.

I am my childrens mother...

~"Emancipate yourselves from mental slavery; none but ourselves can free our mind.."~

Bob Marley

Mothers are interesting creatures.  I say that from experience.  Both as an observer and as an active participant. From the first time that you venture out in the world with your (very first) new baby-you are subjected to the watchful eyes of mothers everywhere..Sometimes, I imagine them like a pack of animals..being filmed for a documentary on the Discovery channel (in my head I can hear a narrator(of course he has a British accent)) speaking in a hushed and reverent tone "The experienced mothers, not wanting to give up their place in the pack are posturing in front of the mother who has just given birth..look! The mother of the three month old is proclaiming her child's brilliance..oh wait..here comes another mother..she's carrying "Baby Einstein" DVD's!..look at the way she holds her head up!  How stunning!  Look at how the new mum, feeling inadequate...grazes from a distance.. head down low..never getting to close..We are watching nature in its rawest moments.."

  Oh, I remember those days-when it was just me and Sam. Although,  I caught on pretty early to this superior mother thing.  I found my own special way to deal with it.  I simply made things up-the more ridiculous the better. "Oh! he spoke his first word at only three months?!  Sam did that in utero...By the way, he's teaching a course in the humanities at our local community college now...I know,,,community college..but, we can't expect a Harvard tenure at only six months of age now could we?!" I have to say that it worked pretty well for a time...that is until GASP! *whispers* autism..

  Yes, having kids diagnosed with a developmental disability puts you in a whole other place in the pack. A place where some parents either pity or martyr you.   And you know?  It might not be as awful as it sounds if it came with...I don't know..candy or coffee or something. But it doesn't.  Instead it mostly comes with this thing that I like to call "The Look"..I think that any parent of any child who struggles with anything knows what I'm talking about. You might be sitting with a group of parents..just talking about kid stuff...life...really anything..and you proudly say something like "My boy wants to be a teacher when he grows up." First-there is an uncomfortable silence..they've met your child...could have seen them stimming...maybe even tried to chat with them. You ignore it...choosing instead to go into detail about why your son would be a great teacher. While the listener gets this look ...head slightly tilted ...eyes that say "poor delusional you" and a sad half smile on their face. Firstly, ick..just ick. I really have come to LOATHE "The Look" But-as I can't do anything to get rid of it(legally)-I've learned to ignore it.  Sadly, some people can only see differences.  I choose to spend my time with people who see possibilities.

   The thing of it is-I see myself as a regular parent. I am not raising disabilities.  I am raising children who have them. I will never say that it has always been easy.  There have been rough times...there have been scary times. But, there have also been times full of joy and love.  We muddle through..we get by.  And, like any other parent-I raise my children to be the best possible people that they can be.  Like any other parent I have dreams and I have fears. Like any other parent I want my kids to have a safe and secure place in this world.  I want them to be accepted and loved-and at the same time, I want my kids to accept and to love themselves.  I had thought it was as simple as that.  Until recently. 

  

  I was not going to write about the recent horror in Connecticut.  But, something happened that set me on edge. I, like so many other people in the autism community was  devastated by the speculation (made by many news reporters)  that somehow this persons possible diagnosis of autism was the cause of his horrendous crime. Of course this has been refuted by bloggers, organizations...even "The New York Times" had something to say about it. Unfortunately, the seed had already been planted. Many were convinced.  So much so that I even found a hate group on Facebook-calling for the execution of anyone on the spectrum. Pretty chilling. ( Of course I reported it-and I believe that it was taken down.) But the thing that personally floored me was the reaction that I received from some of the people I know. People that know my children.   People that I have trusted AND  who have had the privilege of  spending time with my kids. When I discussed this with them, when I adamantly declared that there is absolutely no correlation between autism and violent crime...some of them gave me...*sigh* "The Look." As if they knew better-as if I were deluding myself.  That somehow it was o.k. to condemn an entire group of people-my kids included. Simply because it gave them an explanation. Makes them feel safe.  Case closed,

  I get that when something so horrific such as this crime takes place-it is human nature to try and figure out the cause, to find something to blame..To try and make sense out of the senseless.  The speculation has run rampant.  Maybe he was autistic? Maybe he was mentally ill? Maybe he played to many video games? Maybe he was on the wrong meds? Maybe it is meds in general? Maybe his mother wanted to have him committed and he was angry?  Maybe it is our mental health system?..I have heard just about everything being blamed with maybe the exception of his hair color. The truth of it is-we will probably never know.  But more importantly, I do know this- you can not blame whole groups of people based on speculation and maybes. You can not nor should not call for more death and destruction.  Twenty six people were murdered. That is already too much.

My heart goes out to the all of the families. May they one day find peace.

"The deep pain that is felt 

at the death of every friendly soul 

arises from the feeling that there is 

in every individual something 

which is inexpressible, 

peculiar to him alone, 

and is, therefore, 

absolutely and irretrievably lost." 

- Arthur Schopenhauer

At least we're dressed....kind of..

"Laundry is the only thing that should be separated by colour"

author unknown (to me)

I used to love doing the laundry. Fresh towels, clean underwear...your favorite pair of jeans all clean and folded. It was my once a week ritual..The washing, the drying-even putting it away. It was my quiet oasis in my otherwise very busy life. It gave me a sense of personal accomplishment. It was a joy to behold! Until I had children.

I don't know how it happens. How one small body can produce so much laundry. Yes, I have four kids, and it is understandable that they would add to the laundry pile. I think it is the sheer amount that they add that overwhelms me. Especially as some of them prefer not wearing clothes at all. My children, much of the time and especially when it is warm, prefer being naked. Or as naked as possible. I'll happen to glance in to the computer room, and there will be Oscar sitting at the desk, stark naked playing a game. "Uhh..Oscar?...Where are your clothes?" "Off." "Well I can see that they are off..Why are they off?" "I was hot." "Oscar! We don't play computer games naked!" (there was a time I would never have imagined saying such a thing) "Why not?" "Because it isn't polite." "Why isn't it polite?" "I don't know..it just isn't..please at least put pants on!!" "O.K. Mama." Sigh...it is starting to get a little weird. The other night, they were at the table eating dinner. I went to the kitchen to get something, and when I came back-they were all naked...well Sammy had shoes on..but otherwise, they weren't wearing anything. What's really strange was that I seem to be the only one who noticed. They continued eating as if nothing unusual had occurred. "Hey guys?....what's going on?" They all just look at me as if to say "What? Huh?..What do you mean?" So I did what I thought best "If anyone wants dessert, they need to put their pajama's on" Ha! Two can play at that game.

I understand why they don't always like clothes. Tags, scratchy materials even the feeling of something on their skin can sometimes be too much for them. So I try not to stress too much on them being naked. I do however draw the line at public nudity. This is something that Zoe has the biggest problem with. To her, being dressed can mean wearing a full outfit or just shoes. I can't tell you the amount of times I've called "Come on guys, we're going to the store" in will run Zoe...braids flying, pocket book and necklace on...wearing just one sock. She's learning..albeit slowly. Hey, at least she doesn't take her pants off outside anymore. She'll get there on her own schedule. Look at Sammy. There was a time he refused to wear shoes. Now he never takes them off-even at night. Although I did get him to switch to slippers for bed time. I take total responsibility for this. He was eighteen months old and he wanted to walk in the snow. He was furious that I was insisting he put boots on. He did not see the point. He put up such a fuss, that in my frustration...I let him. I allowed him to walk in the snow with bare feet. (I still burn with shame over this one) It took him less then a minute to realize that maybe boots wouldn't be such a bad idea. I haven't seen his feet in years...sigh..

April second is autism awareness day. I'm not sure what I think about that. Am I supposed to be "extra" aware? Or am I supposed to make others aware? I am all for discussing autism, enlightening and educating people. I will do most anything to promote acceptance and inclusion. I will do that ANY day. That is part of my job-of being a mom to these four wonderful kids. It has been suggested that we wear either blue or multi-colored shirts on that day as well. I'm sorry, but that is where I have to draw the line. I guarantee that as a family we will do our best to promote awareness, acceptance, inclusion and change. sigh...I can't guarantee that all of us will be fully clothed. Not yet at least...

Oh Mother...

I was driving home from the market yesterday, blessedly alone...When the song "Y.M.C.A." by the Village People came on the radio. It made me think of my mother. I had always found it funny that she, a devout catholic had liked that song. I think that she actually believed it was a catchy tune about the benefits of staying at the "Y"-which it was-though not quite in the way she thought....I find it odd, my mom has been dead for almost half of my life-and yet I am still so aware of her influence on me.. Mothers are powerful people. As I look at my herd, I wonder, how much of what I say and do will affect them. I wonder, what it is about me, that they will carry forward with them into adulthood? I hope it's my sense of humor.




Lately, two of my herd have been overly interested in death. Oscar in particular. He is having trouble understanding the concept-and as it was mothers day, he wanted to know what had happened to mine.



Oscar-"Where's your mom?"



Me-"She died a long time ago"



Oscar-"Where did she die?"



Me-"Where? do you mean how?"



Oscar-"Did she leave?"



Me-"her body didn't work anymore-it was very sick...so it stopped"



Oscar-"SICK??? will she get better"



Me-"No honey, she's done with her body"



Oscar-"DONE!!! Where did she go?"



Me-"...I don't know...are you worried about me leaving?"



Oscar-"No, your mom is dead... can I have a snack?"



Me-"Are you sure you're not worried?"



Oscar-"NO!"




I'm not going to stress myself out too much about it. Death IS a hard concept to explain. I am though, quite amused by all of the "death scenes" that both Oscar and Zoe have been staging. I'll just happen to be walking through the living room, and there will be Oscar, lying on his back-hands folded over his chest and his eyes closed. "What are you doing bud?... "just being dead""O.K. have fun-dinner is in fifteen minutes"...O.K. mama." With Zoe, it's a little bit different. "Zoe, I need for you to go find your juice cup" She will then throw herself on the floor and say "Zoe isn't here-she's dead"..."O.K., when you are done being dead, go and find your juice cup please."




It would be so much easier if kids came with there own instruction books. There are days when I think that I am doing a decent job raising my herd-and then there are days where I doubt everything. If there were such thing as a "mother report card", I think that I would do o.k.- a couple of "A's",mostly "B's". Although, I know that in the comment section it would state "doesn't play well with the other mothers" I don't know what it is-my methods, my ideas...my humor-it just seems to put some mothers off. Especially, when I talk about autism.




Autism is a big part of our lives, but it is not our whole life. Yes, there are certain things that we have to do in order for our boys to feel safe and comfortable . There are routines that we follow-steps that we take to create the best possible atmosphere for them to learn and grow. The rest of the time...I just let them be. I don't worry that they only eat about five different things-because for the most part, those five things are healthy. I don't structure their play time-I don't fill every moment of their day with activities. They may be on the spectrum-but they are kids first and foremost. They need to play, ride their bikes, dig holes in the dirt, invent their own games-and if they need to flap and stim at the same time-so be it! They are learning what is and what is not appropriate through that freedom.. The world is always changing, and they have to figure out how to bend with it-or at least wiggle a little. I am not always going to be around to guide them. Part of my job is teaching them how to guide themselves. My methods might be different, but it doesn't make them wrong. ( my goodness! the reactions I got when I told some parents that I had (with permission) flapped and eeeed alongside my son-I wanted to know what it felt like-to better understand.)




I have four very unique and amazing children. I am so proud of all of them. I look at my boys and see such growth-especially in the wake of the grim prognosis we had been given for them. I have such joy...and much hope. My wish is for them to look back one day and recognize that they have always been cherished and loved-thoroughly and unconditionally. Having a sense of humor wouldn't be bad either.