Monday, September 28, 2009

Confessions of a worrier mother...

"Charity creates a multitude of sins"

Oscar Wilde

I was over at LB/RB last night reading Sullivan's post "Why I don't like "I am autism"" You can follow the link over there to read it. I thought that it was a well written piece. Some of the comments however, left me cold. One parent in particular grabbed the spotlight. Most every comment that they made, proved the point of Sullivan's post. This particular parent at times said some horrifying (in my opinion) things. This in turn lead to the entire thread being a debate between just about everyone and this parent. So much so that the title of the post could easily have been changed to "The life and times of Bensmyson"

I myself made a few comments. One in particular was in direct rebuttal to something this 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 child struggles. I never implied that my children didn't struggle- simply stated that they didn't suffer. They were right however in one area-I am lucky. Although my reasoning and theirs probably differ. I don't know this for a fact, because they never responded when I asked "HOW I was lucky?"

Three of my 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 or ridiculous and oft times dangerous treatments 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 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.

Sunday, September 20, 2009

Call waiting

"If the phone doesn't ring, it's me"
Jimmy Buffet

If I were to call out to the kids.."who wants to help me put this laundry away?" or "Who is going to help clean up this play room?" I would be met with an eerie silence..only the sound of crickets chirping away outside. You would think that I was totally alone in this vast falling down barn of a house. The same goes when I ask them questions about their day..or what happened in school.
I don't get conversation..but instead, one word answers. There could have been a Ninja attack or free elephant rides..but I won't hear about it. Not when I ask. No, my kids save all conversation for when I am on the phone. Normally, I am very proud of my children's manners. They say please and thank you, excuse me when they interrupt a conversation..they are well behaved. Until I start talking on the telephone. That is when all bets are off. It is as if some bizarre force takes over-and they MUST have my undivided attention at that very moment. They will do anything that they can to get it. Crazy things...scary things...dangerous things..The more I attempt to hold them off-the harder they try.

I am not a fan of talking on the phone. I prefer having my conversations in person. In some cases though, there aren't any other options. My sister lives four hundred miles away, so the phone is definitely more convenient. I do try to time my conversations for when the kids are at school. There are days however, when this just doesn't work out. Close friends, family,..they understand my kids ..they are prepared to be interrupted five thousand times or so. We are working on it.
Saturday morning, I was expecting an important call. There was no other possible time for this person to call me. I warned them that we would be interrupted-a lot. No problem, they understood, they had kids too. I threatened...I mean warned the kids as well..I set them up with snacks, computer games DVDs..I told them "This is an important call..please let me talk-IN PEACE!" They said that they would and went off to the various things that I had set out for them. At around ten a.m. the phone rang. The kids were all occupied for the moment-so I rushed to answer it. I wanted to get as much conversation in-before they noticed.

Me: "Hello?"

Caller: "Kathleen?"

Me: "Yeah..Hi!..Could you hold on a second please...Sammy! now is not the time to tell me about Pokemon-I am on the phone...I'll be off in a minute..yes, in a minute.. I'm sorry, the kids seem to need me more when I'm on the phone..."

Caller: "That's o.k. I was calling about..

Me: "Sorry!..hold on a second please...What Oscar? is not the time to say that.. I am on the phone..Osc...not now..not...sigh..fine Chowders Feet!..o.k.? Go play on the computer...I'll be off in a minute...sorry..where were we?.."

Caller: "That's fine, I wanted to tell you about.."

Me: "Ahhh...hold on!! Lily!!! Get off of the table right now! ..NOW!! We do not stand on tables!!! Now Lil! You want what? I'm on the phone..I'll be off in a few..what? The river?!! Zoe you are three! You can not play online poker!.I don't care if you have two Q's!!...sorry..I'm back..(BEEP) sigh.. hold on it's call waiting..Hello? Yes this is Kathleen..oh.. Hi! I thought I was already talking to.. uh oh..can you hold on?' (click) Hello ? um...who AM I speaking with?"

Caller:"Kathleen?...I was calling with important news about your Sunday newspaper delivery"

Me:" I don't have the Sunday paper delive...hold on...Sammy-STOP! Never stick a knife in the toaster!! that is dangerous! You could electrocute yourself! get it out this way...I'm sorry..I don't get the Sunday paper...hello? ..hello?...(click) hello?...hello?" sigh..both of them hung up.

I can look at this a number of different ways..The important call I was waiting for? Well if it is that important they will call me kids did learn that putting a knife in the toaster and standing on tables can be dangerous things. Although saying "Chowders Feet", and asking for help with online poker..we will just have to work harder on those things. As for telemarketers?
I doubt that I will be receiving calls about the Sunday paper any time soon..I do know this. If I ever want my kids undivided attention, if I ever want to know what they are up to, what they are doing...all I have to do is pick up the phone.

Sunday, September 13, 2009

Oscar and the abstract cactus...

I do remember one thing.It took hours and hours but..
By the time I was done with it,
I was so involved, I didn't know what to think.
I carried it around with me for days and days..
Playing little games Like not looking at it for a whole day
And then..
looking at it.
To see if I still liked it. I did.
I repeat myself when under stress.
I repeat myself when under stress.
I repeat myself when under stress.
I repeat myself when under stress.
I repeat..
The more I look at it, The more I like it.
I do think its good.
The fact is..No matter how closely I study it,
No matter how I take it apart,No matter how I break it down,
It remains consistent.
I wish you were here to see it.
I like it.

From "Indiscipline" by King Crimson

Two weeks of school down..sort of. Three days the first week and four the second. Tomorrow begins the first time they will be going for the five full days. Hallelujah! I say this not so much for me-but for them. My kids need a pattern-a consistent pattern. It gives them a feeling of control knowing exactly what they are going to be doing. Having the odd Monday or Friday off, really throws them. They don't know what to do with it, and in turn..I don't know what to do for them. They love school. They love it so much that I can use taking it away as a threat. "Fine, don't clean up this can stay home from school tomorrow and do it instead." "NO!! Mama..I'll clean it now..don't make me miss school!" "Well..'s your choice..." Sometimes I feel down right evil. But, I get over it.

Out of the four of them, change affects Oscar the most. School to Oscar is the ultimate in order.
He has a schedule, a plan, and as long as you follow it-he is one happy boy. If you change it without ample warning (by ample warning I mean-notifying him of the change at least fifty or so times..having him repeat it back to you and putting it in writing-in triplicate) my boy loses it. I can't say that I blame him. He took the time to memorize the schedule that they made, to the point that he knows it forwards and backwards....even "offering" his help should they somehow forget something. He deserves a warning or fifty thousand, if it is going to change.

This year, getting back into the rhythm of things hasn't been so easy. He hasn't had a full week, hasn't gotten to do the things he likes yet (library and music), his teacher has already been absent once..he just doesn't feel settled. It is taking its toll. He is one grumpy boy. Really grumpy. So grumpy that he is taking his mood out on everyone.I did try to talk to him about it..but sometimes, talking to Oscar, especially about his feelings..well...sometimes I feel like I need a guide book, or at least a translator. "Hey bud, what's going on? You know it's not o.k. to hit your sister." "Yes but..but ...but...but..." "But what?" "but..but..but.." "Is it school?" "No!"

"Then what's going on? You seem very grumpy" "I'm ANGRY!" "What are you so angry about?" "I'm angry at the cactus!" "Your angry at...the cactus...What cactus?" "It is sharp and it pokes people." "Wait a second...are we talking about a cactus plant? Is there a cactus at school?" "The cactus pokes hurts them!" "O.k...I'm a little confused there a real cactus?..or do people make you think if cacti?" "Can we be done talking Mama?"..sigh.."O.K- just remember that we don't hit people in this's o.k. to be angry..but we don't take it out on other hitting!..O.K.??" "No hitting..o.k. mama"

Sigh...I'm not quite sure what Oscar meant about the cactus. I do know that the message about not hitting got through. But the cactus? It could in fact mean that Oscar is equating the change of schedule, the uncertainty of his day to day activities-to being poked. A cactus is a great analogy. Only time will tell. I know this much though-I won't know until I know. I can't tell you how many times I have patted myself on the back-thinking I figured something he said out, only to be proven wrong. So until open house night at school, when I know for sure that there isn't a giant cactus wreaking havoc on the students..I'll keep my speculations to myself.

Saturday, September 5, 2009

And they're off!

"I got the boogie boogie in my socks"
Rickie Lee Jones
From "Woody and Dutch on the slow train to Peking"

The first day of school in my house is a cause for celebration. The anticipation, the excitement, the sheer exuberance of that day is wondrous. My kids seem pretty excited as well. They finally get to wear their new shoes-(I keep them hidden till the first day..otherwise they would have magically outgrown them or worn them out in the three days since they were bought) new backpacks (also hidden for fear they will be lost or buried in the sandbox) It's a new adventure but the same routine. So they handle it pretty well. For the first day or two at least, after that, all bets are off.

The first day went without a hitch. I woke up before the alarm went off-an amazing feat. We had lived for so many years with sleep deprivation, and now that the kids are sleeping a solid ten hours a night, AND are able to get up unsupervised by themselves...So, I had the luxury of sleeping in this past summer. (Of course what I got up to could be an adventure in spilled milk, cereal,and jelly smears...but it was worth it...and, when I say "sleeping in" I mean lying in bed awake listening to them, because besides being very noisy, they would often come and check to see if I was awake-"IS SHE AWAKE????"..."SHHH YOU"RE TO LOUD!" "I AM NOT-MAMA! SAMMY SAID I WAS TOO LOUD!!") So , on the first day of school, I was surprised to get up as early as I did. I think it was the silence that woke me.

It is nice to be able to enjoy my coffee in that quiet hour before the sun is up, or on this day-the quiet five minutes before my excited herd burst out of their beds. Although "excited" is an understatement. Frenzied..crazed..over stimulated.... Lets just say they were raring to go. "Mama! LOOK AT MY NEW SHOES!!!" "I see them honey, I remember the three hours it took to pick them out" "LOOK MAMA!! THE"HELLO KITTY" ON MY BACKPACK SPARKLES!!!!!" "Yes, I showed me fifty seven times last night" and on it went for two hours until the bus came to take them AWAY!..I mean, the bus picked them up. I stood there as the bus pulled away, shell shocked....just stunned by the absolute quiet-it was deafening.

I spent the day as I said that I would. I listened to music-loud, I drank coffee, I even cleaned out the refrigerator-something that NEEDED to be done. There are people who collect souvenir's of their summer trips, little trinkets to remind them of all their good times...I had my refrigerator. There were the moldy burgers leftover from our first barbecue...half eaten apples from the day I decided to teach them how to make a pie..I even found the ice cream bar Zoe had lost. Sigh...some people have photo albums..I had old food. If only there were a way to save it-preserve it-so that we could take it out and look at it in years to come. "Look Sammy, here's the tuna sandwich with a tiny crumb bitten off-remember this? You swore that you wanted to try tuna, and that you would actually taste it? Remember how you put it in the fridge to save for later?..Maybe next time you could wrap it in something?" "Oh look Lily! I think it's the really expensive blueberries that you couldn't live without !! or is it the bag of raisins Zoe lost..or raisinettes?..Did we ever have a rabbit?" It could be fun.

It took the better part of the day to finish this task- I did take lots of coffee/music breaks. The kids were on their way home by the time I was done. I couldn't wait to see them! Ask them about their days..what did they do? How did they like it? I was so excited! I could hardly contain myself as the bus pulled up to the house...They all came running in "Mama, Mama! We're home!" "Hey! I really missed you guys! How was your day? Did you like it? How are your teachers?" Sammy said "No homework...can I have a snack?" Oscar said " It was good, can I go on the computer?" and my Lily (for whom this was the first time she was in school the full day) "I loved it...I don't know why I didn't do this years ago!" That's about as good as it gets in the description department. They seem happy. We'll see how it goes over the next few days. In the meantime, I'm thinking about cooking something special to commemorate their first week of school. You know, something to stick in the back of the refrigerator to remind me of this special time.