Saturday, November 9, 2013


~"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...


Bright Side of Life said...

Oscar sounds like an absolute treasure. I hope he finds his (school) spark soon.

kathleen said...


jazzygal said...

Oh, I do LOVE your Oscar. You have me laughing and crying with this!

What used to amaze me with my boy was how much of what I was saying he understood when he was younger. I didn't knew that for a long time. I often think he struggles at most things in school and then he blows me away... not with brilliance but with the fact he 'gets it' more than I think. And then there are times he doesn't. Similar to your situation...but different, I know.

What about taking it subject by subject and breaking it down? Seeing exactly the areas and concepts he's really struggling with and prioritising those in any any extra help time he gets? (In Ireland we call it Resource hours)

Best of luck, I know you'll get your head around this and your Oscar will get what he needs :-)

((xx)) Jazzy

Looking for Blue Sky said...

I've always really loved Oscar too: he is just such an individual and maybe that's why school doesn't always work so well for him - because even the best schools are designed to meet a certain set of needs. I see it with Smiley, when we can't even find disability equipment to suit her needs now - she will need stuff to be specially designed because she is a one-off. And I think Oscar is too xxx