Tuesday, March 30, 2010

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...

Friday, March 26, 2010

In which a mother chooses a mote instead of a pen..

"And why beholdest thou the mote that is in thy brother's eye, but considerest not the beam that is in thine own eye? Or how wilt thou say to thy brother, Let me pull out the mote out of thine eye; and, behold, a beam [is] in thine own eye? Thou hypocrite, first cast out the beam out of thine own eye; and then shalt thou see clearly to cast out the mote out of thy brother's eye."

Matthew 7:3-5

Oh we've all been there. Your out shopping when all of a sudden you hear it. It is a sound like no other. If you are a parent,you recognize it in an instant. Your head goes up..you look around..if your kids are with you...you look at them. There it is again...in the distance ..a very loud and perceivable "NOOOOOOOOOOOOOOOOOOOOOOO!" followed by crying and perhaps some screaming. A child is having a tantrum. And for one glorious moment you think to yourself - "I am so glad it is not mine." You're glad because you have been there, you have done that, you know what it can be like. If I happen to walk by this tantrum in progress, and I catch the parents eye, I always try to give a look of support, a knowing smile. I try to let them know that I have been there and I know what it is like...that it is o.k. A little kindness can go a long way.

I remember being in that same position so many times over the years. And although we have grown out of public displays of unhappiness..I remember too well what it was like being in the middle of one. To have one of your kids lying on the floor screaming and kicking in the middle of the store..you feel helpless...vulnerable. I remember once, my boy had reached maximum capacity, he had hit sensory overload..there was nothing for him to do but break down utterly and completely. Unfortunately, this happened to be in the doorway of our local supermarket. I was eight months pregnant at the time and way too big to carry him, so the most I could do was slide him over to the side(so people could get in and out), sit down next to him and wait it out. To this day, I will never forget the kindness of absolute strangers. The knowing smiles, the kind nods. Letting me know that they too had been there in my same position..they understood and it was o.k. Of course there were other looks as well. The "My children would never behave that way" and "what kind of parent are you" attitudes. I admit that there was an evil part of me that thought "wait until you have kids of your own and then come talk to me.."

It isn't easy parenting children. The level of difficulty in doing things like going to the market or the library very much depends on a variety things.(do I have enough snacks with me?) I generally have four kids in tow. Most of the time things go smoothly. Sometimes they don't. We are a work in progress. A trip to the store is an opportunity to work on things like manners, patience (mine), getting along (with each other) and social interaction. I never much thought of how we look to strangers-I'm too busy focusing on the kids. Now I know that we might "appear" different. Some of us flap, some of us hop and some of us don't. It is who we are, and that is good enough for us.

A friend of mine (http://www.storkdoc-nos.blogspot.com/) brought something to my attention . It seems that a mother wrote a blogpost yesterday about her experience at the library. I would give you the link, but the post has been deleted. It WAS titled " In which Smockity considers jabbing a ball point pen in her eye". It seems our heroine Smockity, needed to kill some time, so she took a few of her children to the library. While waiting, they could look at books, use the computers and she could catch up on her bible reading. In walks our protagonist "grandma" and her young granddaughter. Smockity thought that she was about four years old. The little four year old ran to the computers, but they were all in use. Smockity describes the young charge as "flapping her hands", hopping..and GASP! perseverating. The young girl eager to use the computer, repeatedly told her Grandmother that she was doing a good job being patient. The Grandmother, used endearments and praise, telling her young charge that "yes, she was doing a good job." This ANNOYED our heroine. Why didn't grandma just distract her with a book? Why was Grandma using so many endearments? This girl's perseverating wasn't endearing! And why did Grandma keep looking over and smiling at our innocent bible bearing heroine? Was it to try and get her to remove one of her own children from the computers? No sir! If that was what Grandma was aiming for-she was just going to ignore her and continue reading her bible. In fact our heroine had a mantra going through her head.."not my child-not my business" Our saintly heroine was mighty pleased with herself...although she was worried that one of her own sterling examples of perfect reproduction might comment and say "But she is not being patient!" Then what would she have done??-because her little angels would have been right!! No, it was best she just keep her mantra going and her eyes on her bible. As frustrating as it was, (she did consider putting a pen in her eye) she would blog about it later. And blog she did-much to the dismay of many parents. I do not think that this was the response she had expected. To her mind she was relating an anecdote, an experience..she was taking the opportunity to express her disgust with what she perceived had happened.

Some commenter's thought that the little girl might be autistic (because of the description of her behaviors) I don't think that it matters. This isn't a mother who blogs on disability. She might not recognize autism. I can not hold that against her. What bothered me was the self justified arrogance of her post. The "I wouldn't let my kids behave that way" attitude. She could have of reached out to the Grandmother, offered her a smile, some reassurance. It could have made a huge difference, and been a learning experience for her children. Instead, she chose to deliberately ignore her-which is a great way to teach intolerance.

I don't know the reason why she pulled her post. It could be because of the many negative comments, it could be because she felt bad. But after reading this http://www.smockityfrocks.com/2010/03/1846.html I don't think so. It just makes me want to change the world even more. sigh...way to go Smokity. Good luck with that mote, although I have to say, your pen would have been easier.
Update-thanks to Corina, I have the original post-

Monday, March 22, 2010

Ride of the Valkyrie Mother..

"The hand that rocks the cradle
is the hand that rules the world"
W.R. Wallace

You know, I'm not much of a yeller. I don't believe that shouting and arguing are very effective ways to change anything. I think they just make you "feel" like you are doing something. I'd rather use humor. The problem with this is that people don't always take you seriously. Or, as I found during last weeks parent teacher conferences, they think it means you are weak, easily placated...gullible. Au contraire!!..Big mistake! Oh ye of little faith..or in the words of Mr. T.."I pity the fool.."

I have to say, for the most part, my kids have been blessed with wonderful teachers. People who have been more than willing to make simple accommodation's so that my kids were comfortable. I in turn have always made myself accessible to them..offering anything in the way of support, information and guidance. I think it is important to have open communication with your kid's teachers. I look at it as teamwork. Unfortunately, this year Sammy's teacher is not a team player. I was warned at the beginning of the year to watch out for her. I was told that she didn't always follow the rules..didn't always do what was best for the kids..had more interest in spending time with her husband (the other fifth grade teacher) than in actual teaching. I was told to make my presence known-in a big way. I thought that I had. I thought wrong.

Last week, I had a conference with Sammy's teacher..Mrs. Dragon Lady. I call her that because of her ginormous (at least 4 inch) press on artificial talons uhh.. I mean nails, and the fact that she uses said nails to point out various things i.e. charts and diagrams, and she clicks them either together or on the table while she talks. It is disconcerting to say the least.

Mrs. Dragon Lady-I'm glad you came in..I have concerns about Sammy. (click click)

Me-Concerns? What about?

Mrs. DL-well, he seems happy enough..click click...but he is failing math..

Me-What do you mean failing math?! Isn't he getting the help he needs in the resource room?!

Mrs. DL-Yes.. Finally...I've been trying for months to get him help...(click click.)..I THINK HE'S REGRESSING. click click click..

Me-Excuse me??..I came to see you in October. YOU stated that Sammy was doing well. Furthermore, I said that if there were a problem, you were to call me immediately and that I would do my best to help fix it.

Mrs. DL-(click click click)..I can't go against I.E.P. protocol..

Me-(at this point my face is burning,my blood pressure is through the roof) What do you mean?
I came to see you in OCTOBER. I told you to CALL me if there were problems. In December we decided to get him help in the resource room..and now you tell me that you've been trying to get him help for months?? Which months??

Mrs. DL-well I (click click) have to follow protocol..

Me-WHAT in the hell are you talking about??? Please don't talk about I.E.P. protocol to me...I have been doing I.E.P.'s for over eight years..I am well aware of what the rules are..You are really starting to piss me off. (yes, sigh., I said that)Why didn't you call me? What do you mean by regressing?

Mrs. DL-oh uh well..yes he is in the resource room but he has to have his work modified (click click click) He is going backwards..he doesn't seem to be able to grasp what is being taught in the classroom..

Me- perhaps if you didn't combine both yours and your husbands classes together, putting over fifty children in one tiny room..perhaps he would not be so distracted..In college even most of my lectures had less students..and I was an adult. Sammy has auditory processing issues...too many people distract him.

Mrs. Dl-(click click) yes the room IS small..uhh..(click click) I told them that we need another fifth grade teacher (rapid clicking) another room..but they don't listen,,uhh well, yes, Sammy loves science and history..he's doing well..uhh..yes, I'm glad we straightened that out..

Me-I am going to call a team meeting.

Mrs. Dl made small talk..totally ignoring the idea of a team meeting. Telling me how great Sammy is..and creative..just a lovely boy etc.etc..I bantered with her..told a funny story about him..it calmed the situation..it didn't however change it..

Mrs. DL- Thanks for coming in...sorry for the misunderstanding..(click click click)

I left there on a positive note. My boy does have to spend seven hours a day with her (and her husband...and her talons) . Besides, you do catch more flies with honey than with vinegar. What Mrs. Dl does not realize is that I am far from finished. By nine thirty this morning, I had already arranged for a team meeting, spoke with the principle, and arranged to speak with his caseworker and his classroom aid. I have every single one of his I.E.P.'s in triplicate. I have his speech and o.t. evaluations. I am waiting to hear from his counselor. I am gathering every piece of information that I can. I will go into that meeting armed to the teeth. Wagner's "Ride of the Valkyrie" playing in my head. They will not know what has hit them. Oh I might be the "nice" mother, easy going, quick to make a joke. But we are talking about my boy here-my son. And you just don't mess with a mother. At least not this one. Regression my ass! I'm thinking I may even bring a nail clipper .

http://www.youtube.com/watch?v=cNl1ykMm1X0 Here is a nice version of the Wagner piece.

Monday, March 15, 2010

Euphem-isn'ts..STIMulating perspectives...

"We don't see things as they are, we see them as we are"
Anais Nin

"It's not what you're looking at that matters, it's what you see"
Henry David Thoreau

I got a call from Oscar's occupational therapist last week. During the course of our conversation she said "I wanted to let you know, that in all my years of doing this, I never had a student as confident as he is." My Oscar-confident. How incredible is that? This boy of mine who stims and shakes and eeeeeee's is confident in who he is. It's true though. Watching Oscar walk down the halls of school, or in the store..he radiates such self esteem. The entire school knows him. He is the boy who addresses everyone by name, notices new shoes, new haircuts..outfits..and he always has something to say about it. He is also the boy who has trouble with pragmatic language. His conversation is limited. He is more inclined to repeat funny words and phrases instead of answering questions.

"Hi Oscar, how was school?" "..good..MAMA! say-grey stuffed animals nose!" "Did you do anything special today?" "Say it Mama! Grey stuffed animals nose.."
"sigh...grey stuffed animals nose..did you have library today?" "HAHAHAHAHAHAH! grey stuffed animals nose! HAHAHAHAHAHAHA!" "Oscar! Did you have library today??!" "It's funny Mama." "I know it's funny, but I'm trying to ask you a question...did you have library?"
"(whispered) grey stuffed animals...Yes! I had library!...nose nose nose..." Off he goes to find more things to laugh at via youtube..(the source of said grey stuffed animal and nose)

His stimming and lack of conversational skills don't stop him from having friends, being invited to birthday parties, or even asked to play. It is his confidence and joyfulness that draw people to him. He is a terrific kid, and people see that. Right now, we live in a very small community and he is insulated from much of the worlds prejudices. I get that. I know that his behaviors aren't always going to be so easily dismissed, so readily accepted. We are working on them at his own pace, not mine. He knows that public stimming, shaking and eeing are not always going to be acceptable. That people will look and that is all that they will see-not bothering to acknowledge the person behind them. He gets that. He really does, and he is working very hard to find ways to cope in public. At home-all bets are off. It is stim central, and that is just fine. Home should be that way. Home is where the "eeee" is.

The idea behind this post today was to talk about perspective. When I got the call last week from Oscar's o.t. it was great. I love hearing good things about my kids. The o.t. had even gone on to say "Oscars confidence and self esteem are a testament to your parenting" Normally, I shy away from parenting compliments. They make me uncomfortable. I make far too many mistakes on a daily basis to bask in the glow of praise. Parenting is parenting. I don't deserve any more credit than any other parent-special needs kids or not. In other words...I'm just doing my job. Today though, I am going to take that compliment and wear it like a mantle.

I was over at AoA (because Kim Wombles made me go look) and I read a piece called "A mother's perspective: What is Autism." In it the mother describes her experience with autism as being-an empty suitcase, an empty guidebook, guilt, endless, a crisis,a war, loneliness, isolation, and a thief. http://www.ageofautism.com/2010/03/a-mothers-perspective-what-is-autism.html#more I would not have been surprised if she had included locusts and plagues.

Look, I'm not dismissing that she has had a hard time. I am not dismissing that her son struggles. Some of her descriptions of his behavior very much remind me of Oscar's first four years of life. Parenting isn't easy. But to call your son a saint and portray yourself as some kind of warrior is a huge mistake, and a disservice to all parents, and to all people with autism. He is your son, your child, a person-and you are his mother. There are no stronger descriptive needed. There is a big difference between looking at what you have as opposed to what you don't. Oscar is MY proof of that.

So today, when I ask him how school was and he says "slinky feet" or "stuffed animals nose"..or our old favorite "Farmers nipples!" I'm going to laugh right along with him. He'll let me know about school when he's ready to, and in his own time. I have absolute confidence that he will. Right now, I have only this one moment in time, and I am not going to waste it thinking about what could have been. It really is all in how you look at it. Oscar is here right now-and he is wonderful, and I am blessed. Carpe farmers nipples!

Monday, March 8, 2010


"So I went to the dentist. He said "Say Aaah." I said "Why?"
He said "My dog's died" -Tim Vine

Of all the things you have to do to keep your kids healthy, taking them to the dentist is one of the worst. At least for me. My kids LOVE it, and I can not begin to understand why. They are all really picky about what goes into their mouths. Tastes, textures even appearance are important in getting them to eat. Our daily menu consists of about five things, three of them are pizza based. It isn't like I haven't tried other foods-suggested different things. I have. I have tried disguising things, substitutions..you name it, I've probably done it. The problem is-they always know. Before I even put it on the table..sometimes before I even attempt to make it..they know-and they complain "What's that smell?" they'll ask suspiciously. "What smell? "The one coming from the kitchen." "I haven't even started dinner yet-so I don't know what you're smelling." " I want pizza instead" "Instead of what??!" "Instead of what you're making." "But I haven't even..." sigh. Sometimes this "knowing" unnerves me. Which is why I am so surprised by their attitude towards dentistry. They certainly don't get it from me.

I don't just dislike going to the dentist, I loathe it. Just hearing the words "open please" are enough to send me running blindly into traffic. The suction, the drill..the HORROR! Sigh... I blame my mother. She had this uncanny knack for picking out the WORST dentists in the world. I wouldn't be surprised if she had had a guide book. "How to influence phobia's and gain anxiety-a mother's guide to bad dentists" It was that bad.

I ran out of my very first dental appointment at the age of three. The dentist, Dr. L, or as my brother calls him "The butcher, had grabbed my nose and yelled "HONK HONK" in my face. Terrified, I did the only thing I could think of-I bit him, hard. Which quickly led us to my mothers next pick. A dentist whose hands shook so badly, you didn't know which tooth he was working on..and neither did he! So horrific have been my dental adventures that I now need to be anesthetized just to make an appointment. Thankfully, my kids have not caught on to my dental anxiety..or the fact that I haven't gone in six years. I've adopted a "don't ask don't tell policy". So far it's working.

The other night Sammy came to me and said "Mama? Do you think I might have braces one day like you did?" "I don't know bud, maybe." "Cool!" He smiled and off he went. I don't dare let him know about my orthodontist. My mother picked him out. I was left with braces stuck on my teeth because he died during treatment.

Monday, March 1, 2010

couching the family

( from left to right..Nigel, Bandit and Charlie..note-I didn't name
any of them. They all came to us named. Only
Charlie's suits him)

We had hardly any furniture when we moved into our house almost five years ago. I had three kids, one on the way, and no chairs...or tables..or a sofa.. About six months before we had moved, a friend of ours offered us a houseful of furniture. She had inherited it from an estate and had no where to put it. In fact she was rather eager to get rid of it. She offered to give it to us-even to pay for moving it to our house! What a windfall! Or so it seemed. At the time we were living on a shoestring. Our mortgage payment was excessive..I wasn't working..we had three kids. There wasn't a whole lot left over at the end of the month for "luxuries". The meager amount of furniture that we did have was o.k., it served its purpose. I was pretty pleased with the idea of having some new things...perhaps a place for people to sit down.

One night, my friend called me rather frantic. "There is a lot more furniture than I first thought! You have to make sure that you have room for it!!!" I assured her that we did. So, I doing what any sensible person would do. I held a garage sale. I sold every stick of furniture that we had-anything we didn't sell, I donated-or threw away. With the exception of our beds-my house was empty. I believe we made a whopping $134.00. Sammy was not pleased. Change for him is very hard. Letting go of possessions, even harder. "But Mama! I loved that couch!"Sammy buddy..it had a hole in it." "I liked the hole!" "Sammy, the dog threw up on it..you threw up on it..Oscar threw up on it, I WANT to throw up on it!..I don't even know what the original color was..it stinks..it's dirty..it is time to throw it away." "Can't we save it?" "For what?!" "For later!"..."Sammy..change is good...things change all the time.." "No Mama, It's not." sigh. I did finally convince him that we were better off with out the couch-but it was a challenge. There were bribes involved..markers, paper..a "Wiggles" dvd...but in the end it all worked out. Sort of.

The problem was that I couldn't get in touch with my friend. Messages were either misplaced or ignored. We spent a lot of time on the floor. About three months after the garage sale, I got a phone call. "Oh! You must think I was crazy going on and on about the furniture! I'm so sorry, but life has been really hectic. I will have my assistant call you about it next week. She will set up the delivery time with you." That was four and a half years ago. It was also the last time my friend ever spoke to me. I still don't know what happened. I valued that friendship, and I was really sad to find that the feeling wasn't reciprocated. We had no other option at the time but to sit in our mostly empty house listening to "The Wiggles" almost non-stop. Perhaps Sammy was right..we should have kept the stinky couch..Maybe all change isn't good.

Shortly after we moved into this house, I decided that I had had enough. We were going to get some furniture come hell or high water. Nothing expensive, just a place to sit. I was hugely pregnant at the time and attempting to get up from sitting on the the floor was near to impossible. I looked like a deranged Teletubbie rolling back and forth trying to get the momentum to stand-only not as colorful.

We decided on a couch and love seat from a discount furniture store. It was not well made, or even pretty..but it was cheap. Cheap being the operative word. I thought that if we treated it gently, it could last us for a while. I made up a set of ground rules. No eating on it, no shoes, no jumping, rolling, drawing, no pets. Basically, you were allowed to sit on it gently IF you didn't breath to hard. Within the first week, Oscar threw up on it more times than I care to count, Lily peed on it..and the sneaky dog jumped up on it while we were sleeping ripping a hole in the cushions with his paws. I learned to live with it. Better to sit on a stinky couch than roll on the floor like a children's television character.

This year, we bought yet another new couch. This time it is going to be different. I moved the stinky couches into the playroom-keeping the nice new one in the living room. For the first time in a very long time I can sit down without fear of what I'm actually sitting on. I don't have to share this couch with the kids. They can do whatever they like with the ones in the playroom. I finally have my own space..I can stretch out..this baby is mine!

The other night, I walked into the living room with my laptop and a nice cup of coffee only to be met with four kids sitting there. On my new couch! "Why are you sitting here?? You have couches in the playroom." "But Mama...we like your couch...and there's no room on the playroom one.." "What do you mean there's no room.?" "Go look..." So I did (see picture) What else could I do but say "Scoot over..I want to sit down.