The Super Bowl Party via Manipulation

What a couple of weeks! We had a huge snow storm, nine to ten inches in one day! Remember, I live in Missouri so that doesn't happen very often. It was kind of a strange snow, a mile or two in either direction only got a dusting. For us, it meant a fire in the fire place and staying at home! It was actually kind of nice to not have to be anywhere for once! Alex and Twin Sis loved watching the snow, but had absolutely no desire to go outside! - just like their mom, give me a beach!

We also had a flood, courtesy of a malfunctioning washing machine, in the house no less. It did some major damage. But, I guess it is time for some redecorating anyway! I never did like that carpet!!! And... I need a major project now! I keep telling myself that, but I'm still not buying it!

And, of course there was the Super Bowl. For some reason this year, I wasn't too excited about it. We didn't plan a party or plan on going to one. But, guess what... Alex woke up early that morning, got Twin Sis up and cleaned the main parts of the house, well in their own way. Then, the first thing out of Alex's mouth when his Dad and I woke up... "It's Sunday, we're going to have a Super Bowl Party!" Oh brother, so much for a relaxing day at home! Alex doesn't even like football! I don't really know that he understands what the Super Bowl is. Actually, I am pretty sure he doesn't! But, how could we say no?... Luckily, some friends, one of the Rock Families, didn't have plans, so we spent the evening with them.

Again an amazing milestone, I mean inchstone. Alex has learned to manipulate us! Just like all the other teenage kids out there. Yay! OK, its a bit out there, but all the other kids do it, so, it's an inchstone! We do want Alex to be like his peers, don't we? Boy are we in for it!

He doesn't realize it, but he's always going to win. Along with his very masterful manipulation, there is another factor in play, we call it the Guilt Factor. You see, Twin Sis gets to go to slumber parties, she gets to go shopping with her friends, she is texting or chatting on Facebook with someone constantly. Big Sis is the same. She gets to run all over the place with her friends, shopping with her friends and the family. You all know where this is going... Alex doesn't get to do those things... hence, the Guilt Factor! It's not really a bad thing, more like a good excuse to go get ice cream!

Occasionally Alex realizes he's getting left out of a lot of things. Sometimes he gets a bit angry, who wouldn't? That's Alex being a kid, a plain old kid! It usually only lasts a minute or two. Alex's Dad and I try to do something different with just him while the Sisters are off on their special events. No one is leaving him out intentionally. Sometimes people go out of their way to make sure he is included and comfortable, especially those Rock Families! Basically, to this point anyway, it all works out in the wash.

Alex is always a happy kid. Seldom will anyone who knows him see anything different. Seldom also, will anyone ever see the manipulative teenage boy, who got his mother to scrub the toilets so that he could have a Super Bowl Party! The Guilt Factor has been around for years and I haven't scrubbed a toilet for that!

When did this happen? Alex manipulate me? GAME ON, KID!! Oops, Guilt Factor! I think I just became that little hamster stuck in his circle! Dang, I didn't even see it coming!

By the way, Alex didn't watch a lick of the game!

A Path to Understanding

It's been awhile since I've posted, but a lot has happened. In my little world, at least!

Alex has reached some major milestones, again in our little world! I have been working on a project and had such little success that I think I might pass it on to you! Read on.... I have a rant!

Milestones, milestones, milestones . . . they are every where! They are on posters in every pediatrician's office, every childcare book, basically everywhere a parent looks. To a parent with special needs, though, imagine what those "milestone" posters represent?

All they said to me was, "Look here, another place your child is failing! Only now it's poster sized! - and in color!" Like I didn't feel bad enough that Alex wasn't walking at whatever months old he was supposed to! ( Can you see the good news here? I've already forgotten when he was SUPPOSED to do it!) He walks now, who cares when he started!

First words, puhhlease..... all I know is that it wasn't mama or dada, and it came way late! I do remember though, that when he was four or five, the speech therapist came running out to the carpool lane after school to tell me that Alex had dropped something and said "shit". She was so excited! Apparently that particular word contains a very hard consonant blend to make... and he used it in the appropriate context! Woohoo! Alex's first ten words, and one was a four letter word! with a difficult consonant blend! ...... Milestones

Potty training, that's a good milestone, too. I worked in a Mother's Day Out program for preschoolers for 10 years, special needs or not, there is about a six year window as to when a boy will use the toilet! I decided it's all about their mood, not their ability. And does it matter, as long as they can hit the urinal in junior high, or at the office? Does it really matter when they learned? And sometimes, they just can't!

Here's the thing, too. Say they haven't learned to walk or talk, or hit the urinal in junior high, so what? There are adaptations to assist them. Does that stuff even really matter to us in the big picture? That stuff is small potatoes! These people have much more difficult things to deal with! Small potatoes, I tell you!

Don't get me wrong, it is a daily struggle for people with special needs and their caretakers. It isn't easy, it isn't difficult, it is harder that heck for all involved! Actually, no one knows how hard it is until you have been in their shoes and the shoes of the people who take care of them.

This brings me to Alex's milestones. In our world, they are really inchstones. No one notices them but us. They are every bit as big as a baby's first steps, just very different.

Alex started and maintained a conversation. He spoke six sentences with eye contact and each response was appropriate and grammatically correct. He also did it twice. No biggie to most people, especially when you think of a thirteen year old. But for Alex, this is major! Never mind that he went into great (too much) detail about all the mechanical difficulties, both real and imagined, of our vehicles with his teacher. (Can DFS take kids away for parents driving crappy cars?) He also held a lengthy conversation with his speech therapist, again with eye contact! Yay, for Alex!

Alex also, showed a lot of independence this week. Poor kid got the flu. It is kind of sad for me, but for the first time, he didn't really want me around. He took care of himself. He went to bed when he had a fever, he knew when he needed ibuprofen, knew he needed to keep liquids down. Just very independent all around!

Mrs. Teacher has her class run a weekly coffee shop for the teachers and staff at school. She's done this all year and Alex has worked in it quite often. We think this has been a great opportunity for Alex and his class, but we didn't realize until just recently what exactly Alex's job was. When Dad took Alex to work at the coffee shop most recently, Alex was actually pouring hot coffee into the teacher's cups. Again, no big deal for a thirteen year old. Major inchstone for a kid who is as anxious and nervous as Alex. Mrs. Teacher must be very calming, and the rest of the teachers very unknowing! Another success for Alex!

Now for the tie in.....

The other day at school, during a free time sort of thing, the kids all headed to the commons area! At one table was Alex and his class, his special ed class. The other tables were packed with middle schoolers. Someone at a table made the comment, "I wish we were at the retards' table, they get to do all the easy stuff."

Well, yes, I guess in your world, they do "get" to do all the "easy" stuff. But for one second I want everyone to think about THEIR world! I guarantee you, those kids aren't doing the easy stuff! The stuff those kids were doing at that table was more work for them than anything that particular child could imagine. I am certain that they were reaching more milestones at Alex's table than at any other!

As difficult as it is for me to help Alex, I can't imagine how difficult it is for him to navigate through this world! We should all try to spend a day in his shoes!

With that I want to tell you, March 3, 2010 is the day set aside this year to End the R Word. There is a link to the sight on the right of my blog, CLICK IT, get involved, get your kids and their schools involved. The End the R word site has ideas for activities, posters and all kinds of ways to make a day of it! Take these things and your ideas to counselors, teachers, parent organizations and best of all, student leaders! People need to think about people with special needs, let's help them to do it! END THE WORD ON 3.3.10

THIS IS ONE LITTLE PATH THAT MAY LEAD TO A WORLD OF UNDERSTANDING !!!!!!!