Thursday, February 25, 2010

Alex WON'T Miss His Friends

Well, it's almost official. I am going to have two kids in high school. Nothing about that sentence sounds good. I know, it's only February, but the enrollment process has begun!

Remember, Alex has Big Sis, so we've done this before. Choosing classes for the ninth grade is a project, a huge project. We have to plan their whole high school curriculum, not just one year. We've got to make sure they get out of there with that diploma! Let me tell you, with Big Sis, enrollment time was a nightmare, drama central! She has very definite likes and dislikes, wanted to stay with the crowd, blah, blah, blah. She did amazingly well. Graduated with a ton of college credits and fabulous grades. It couldn't have ended better! But boy, have I been dreading the day we had to do this for Alex.

We've been in denial for months. Alex's Dad and I dread transitions. We are transitioning to a new school, new system and ... GASP ... new teachers. That's right, Mrs. Teacher and Mr. Asst. Principal aren't going with us. Uggg... high school!

Well, it happened, the kids brought their enrollment packets home last week. Dad and I spent hours with Twin Sis making sure we had all the right core classes and pre-requisites to get her through high school with a diploma and, hopefully, with a few classes she likes. Fortunately, Twin Sis, is pretty easygoing. She is a little bit interested in everything. She wasn't very particular about choosing her classes. Of course, as a freshman, they only get to choose a few. I also think she just wanted to get it done with!

Then Dad and I, each with our own 60 page booklets, spent a couple of hours trying to figure out what would be practical electives for Alex to take. After that, we had to decide which ones he would actually like and cooperate in. It was more difficult than we had expected!

Anyhow, we got the forms done and sent them in. No drama, no tears, everybody happy, relatively smooth ... I should have known!

Alex's schedule got sent back to me with some changes. I wasn't really surprised. I figured it would be redone at a "meeting" later on. I looked closer though and decided I needed an explanation. A phone call was in order. "You see, Alex's Mom, Alex is going to be in special education classes all day next year." Oh, really? "We'll see how the first semester goes and then he can always take art with the general ed students the second semester if he's adjusted well." Oh, really? "That's how we do it at the high school level. We've put a lot of thought into this to make sure these kids get all their credits." OH REALLY?

Really? Because Alex's Dad and I haven't given much thought to his future at all. Ummm...... Seriously, Mr. Teacher, we are not off to a good start! It still amazes me that people really think we haven't thought about what's best for Alex. Don't get me wrong, I am open to suggestions and opinions, but only if they are good ones!

Now, here is mine and Alex's Dad's plan for Alex. We know he requires special education classes for his core classes. In the classes that teach material that Alex needs to know and retain, he needs to be in a small class with a specialized teacher. Alex is also very social, despite his severe anxiety. He just takes awhile to adjust and needs an aide and modifications. He can have this in some of the elective classes. Alex will not really need to know the specific material taught in these classes, he will need to see how the world outside of his special education class works. Alex needs his friends, he needs to make new ones. He's worked hard to make the friends he's got and he has worked even harder to put himself in a position to socialize with others. He has certainly earned the right to try!

This is only our plan for Alex. This isn't a plan for any other kid. This may not even be the plan for Alex in two years. But this is our plan for Alex for now. There are all sorts of arguments out there for total inclusion and least restrictive environment and so forth. The bottom line is ... it's all about what is best for each individual.

I'm sure you have noticed a bit of hostility from me today. It isn't always that way. I have also told you about the good stuff. We've had a lot of that for the last couple of years! The fact of the matter is, as a parent of a special needs child, this struggle is tough. People don't realize that it's an internal battle, too. Every parent has them, what's best for their kids?

But this one, this one about how much time spent in the special education setting versus how much time spent in the general education setting, it's a killer! Alex's Dad and I, we each have these struggles and conflicts, then we have them with each other, then we have to go have them with a room full of a dozen strangers that have never even met Alex, then, we have to convince these people that we are right. Believe it or not, we actually have to convince strangers that we know our child better than they do! How often does a parent have to go through that? After all these years, I still don't understand why we have to...

The kicker, of course, just like every other parent, is that we will spend every day wondering if we made the right decision. The part that really gripes me though, unlike every other parent, I have that room full of a dozen people waiting to tell me I was wrong! Oh well, it's a good thing I always find a way to be right!

And I guess it's been a long time since we've had a good old fashioned IEP meeting. Hmmm... I guess by doing the right thing Mrs. Teacher and Mr. Asst. Principal took those away from us. I hope I am not too rusty!

I am fairly certain that soon, there may be a new way to do things at the high school, Alex's way! ~ and he won't miss his friends and social time!

Thursday, February 11, 2010

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!

Monday, February 1, 2010

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