Spark....

~"But if you know what life is worth, 

You will look for yours on earth: 

And now you see the light, 

You stand up for your rights. jah!"~Bob Marley

 

One of my most favorite memories of Oscar is from when he was just a toddler.  Oscar didn't really start verbally communicating until he was about four years old..So, in the years before that, he would find   interesting ways of telling me what he wanted. If he was hungry, he would point at what he wanted and grunt..I never tried to force language on him..but I did talk him through whatever I thought he was asking for.."Oscar, do you want fish crackers?"..I'd look at him-and his reaction would give me his answer..i.e. he would hop if I was right-or he would continue to point and grunt until I got it right...and after a few guesses-if I didn't get it right...he would scream...really loudly...and the more he screamed, the more anxious I would get..quickly pulling every item from every shelf down..until the kitchen looked like a battlefield-and the both of us looking like refugees...tear stained and just plain worn out....He was so very frustrated at not being able to speak..I felt like a failure because I couldn't always understand him. So...going back to my story....

  For a toddler that couldn't really speak, Oscar loved words.  He loved being read to..loved knowing what words were-even though he couldn't say them.(He was a huge fan of flash cards)  He loved them so much that he would bring me any and everything he could carry that had writing on it..thrusting it into my hand and pointing until I read them. Books, cereal boxes...nutrition labels!  If it had writing-he wanted to know what it said.  One day after he had gone through every possible item he could find (and he really was looking) he  came to me carrying a shoe. I looked at him and said "It's a shoe."..I wasn't sure what he was trying to say..because I  hadn't realized that this shoe- had writing on the inside and, well...he wanted me to read it..."Bass size 9" I think it was a letdown..I mean, he had been so proud of himself for having discovered the words..that he seemed a little disappointed that there wasn't more to read.  I thought this was kind of funny so I said "Buddy-if you really want me to read to you-you are going to have to bring me something more than a cereal box or a shoe..maybe something with a lot more words on it...and off he went..I wasn't sure what he was going to do...but I was pretty amused when he came toddling back-a spark in his eyes...carrying-of all things-the phone book!

  That happened over ten years ago...and although he still has the best sense of humor..the spark is fading. I am at a loss at how to help him get it back.  I am at a loss as to how to make school work for him.  I am at a loss...and I am lost.

  Oscar is one of the best people that I know.  sure, I'm biased..but still. He is so very caring and kind..such a decent human being. If anyone he knows(and sometimes doesn't know) is hurting in any way-Oscar is the first person there. Out of all my kids-he is the most intuitive...the guy who knows just what someone needs to pick them up. Yet, out of all my kids-he is the one who still struggles with pragmatic language. Struggles with conversation..struggles with comprehension.. Yet-it doesn't stop him.  Last week was a rough one for me-and by Friday night I was just plain..done. I'd had it..I didn't know whether to laugh, cry or just fall into a coma. I was in a bit of a mood-so, I sneaked off by myself outside..away from everyone. Better to be cranky by myself than to take it out on my family-right? I did not know that Oscar had noticed...and..Oscar being Oscar decided that I needed to be cheered up. So, there I am..sitting hunched over-probably muttering all kinds of words..when Oscar appears.."Hey Mama! Look what I found?  I looked up...and there he was...just standing there...wearing my very lovely beige "Victoria's Secret" push up bra.  "How do I look?"  I burst out laughing.  He doesn't stay to laugh...doesn't prance about..His job was done..he took off my bra and went back to the computer-just like that. (he did let me take a picture though) That is my boy.

 In school-it is a different story,  One day he can do his work-the next he appears to not be able to. I'll say-"Hey-maybe he would do better working with peers?" and I'll get "He'll just charm them into doing it for him." I'll get a comment  he's"really participating in health class!" and then I worry-are they just saying what I want to hear? I will get "He really worked hard today" on one day- only to hear "He was in his head and giggling all day today." the next. There are many people who say "he can" and an equal amount saying "he can't".. I'm not placing blame-nor am I pointing fingers. Except at myself.  I can't seem to find a way to help my son.
                                                         Yes-I have asked him.
"Oscar-do you like school?"  "Yes."  "Is the work too hard?"  "Yes"  "Is the work to easy?" "Yes" "Why can't you do your work?"  "I don't know." "How can I help?" "I don't know." "Do you have fun at school?" "No it's boring." "I thought you liked going?" "I do."  "But it's boring? "Yes, no..I don't know."

  Of course-it would be so easy to say "Oh he's bored because he's really just brilliant!" But my boy is not brilliant (he is to us) at least in the way some people want to categorize all autistic people. We aren't going to suddenly discover that he's a genius in physics..or an eloquent writer..or a public speaker. No, Oscar falls into a weird gray area in the autism world. (He knows that he is autistic-but he doesn't really give a crap.) He is neither disabled nor abled enough  to get whatever it is that HE needs. This, I think is one of our biggest problems-that and the fact that no one can figure out (Oscar included) exactly what it is that he does need...No matter what though-he deserves more than he is getting. He deserves a school that is as interested in his education as they are in the non disabled kids educations.

  Right now, he is on his laptop pulling up images (of what- I don't know) that are making his sisters laugh hysterically. His way of getting them to stop fighting with each other.  He'd be such a great diplomat.  Probably better than some of the ones we have now-I could see him, addressing the U.N. in a tailored suit and bra.  Somehow he would make it work-the world would be a lot happier... For now though-I just want to get him through school..figure out what it is that he needs..My boy needs his spark back...

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.