Sunday, November 29, 2009

The Perfect Tree

Well, we made it through Thanksgiving. Nothing beats eating all day and laying around watching college football! Alex loves the eating part more than the football, but he humors us. When we went to clean up, the pumpkin pie was gone. No one is sure how much had been in there when he started, but we do know he finished it!

One of our family traditions is to go get the Christmas tree the day after Thanksgiving, so on Black Friday when everyone else is out shopping, we head to the tree farms. Yes, farms, plural. No Charlie Brown tree for us. We know where every tree farm within a 250 mile radius is, and we are not afraid to hit them all if necessary.

We will walk each acre of the tree farm to look for the perfect tree. Alex's favorites are always those 20 feet tall trees that have never been trimmed. You know, the ones that probably weren't even planted, that just ended up there. He wants that tree bad! I of course want the tallest, widest tree that my tiny living room can withstand. Big Sis wants the perfectly trimmed tree, she likes them tall, too. Twin sis sort of varies year to year, guess it depends on her mood. Then, there's Dad... He wants the cheapest, closest to the car, no matter what it looks like tree.

Can you imagine that combination of people in a tree farm? In the middle of acres and acres of trees? I'm sure the people in the rest of the place always get a good chuckle at our expense.

Anyhow, this year, probably the weirdest thing in the history of tree hunting happened. We pulled into the gravel drive of the Christmas tree farm that is located closest to our house. Seemed like the logical place to start, even though we haven't had great success there in the past. We opened the car door and all bailed out...

There it was! THE tree! I liked it. Nice size, nice shape. Big Sis was the first to spot it as we were parking, she chose it. Alex still wanted the giant crazy thing, but this was his second favorite, so it would do. Twin Sis loved it, too. Dad was thrilled! Five feet from the car, ten minutes at the tree farm, nobody arguing or crying over the wrong choice of tree. OK, saws away...

We threw it in the back of the truck and headed home. Easy, breezy... Right ?!?

It's funny how perfect the tree looked standing there at that farm all by itself, and how different it looked in my doorway. It took Dad, Big Sis and me, to get it to stand up. Then we had to call Grandpa to come help us get in the house.

It was waaayyy too wide for the doorway. We tried to take the door off the hinges, we tried squishing the branches in with bungee cords. Finally, it took Dad pulling the tree, with all his might, in the door, and Big Sis and I outside, squishing and pushing with everything we had to get it into the door. All the while Twin Sis trying to give directions, but getting yelled out to get out of the way, and Alex sitting in the chair as far away from the ummmm.. chaos as possible.

My neighbors had to be dying laughing. And the verbal exchanges between us were hysterical. It kind of reminded me of labor. Did I mention that we had to move the furniture out of two rooms just to maneuver the tree in. Oh man, what a mess! We finally made it, though. Backaches, lots of whining and arguing but the tree fit beautifully in the corner of the living room.

Now, we were too tired to decorate it. We were too tired for anything! Dad is still ranting about this being our last live tree. HAH, keep thinking that, dear! We all developed a tree decorating strategy. (We are pretty rigid about a few things at our house!) Dad and I will put the lights up Saturday afternoon, after a BIG football game. Then on Sunday, the kids will all put their ornaments on. Another perfect plan.

On a beautiful Saturday afternoon, we all watched our football game, and after our big win, Dad and I put the lights on. I do have to laugh, it is a very big tree. With the lights on, the tree looks almost perfect. We just need the ornaments, but both girls have plans, so Alex gets movie night with Mom and Dad. Ornaments on Sunday.

We aren't really morning people, so the decorating is an after lunch affair. Since Big Sis is going back to school tonight, we actually had a nice big home cooked Sunday lunch. While Alex was finishing up his plate, the rest of us started taking care of some of the dishes. I was sitting with him at the table, and I don't remember the sound as much as I do the look on his face, but THE tree took a tumble.

It did make a nice thud, but Alex's eyes were the size of saucers. He was the only one looking in the living room, and I guess, that thing just came crashing down. I remember thinking to myself that I've seen this on those funniest video shows, but really ??...

Dad, Big Sis and I spent about 4 hours trying to get that tree to stand back up. I bet it weighed 300 pounds. We even went and bought the super size tree stand. It's not really a super size tree, just a little pudgy! We finally, and I am not happy about this, had to bring in a saw and cut parts off! The tree is now standing in the corner of the living room, no longer perfectly trimmed. It looks more like it was angrily attacked. But, I know, eventually, it will look perfect.

Even if it doesn't, we did learn several valuable lessons.
1) When buying Christmas trees, it is good to know the width of your door.
2) A tape measure would be useful at a Christmas tree farm.
3) Shoving huge things through little spaces scares kids. (and is painful and maddening for adults)
4) Nothing good comes from sawing indoors.
5) Kids are terrified of falling trees! (and adults become angry)
and most importantly...
6) If it is that easy to find, it is not nearly as good as it looks!

Now, the firsts for our family this weekend...
1) For the first time ever, we all agreed on the same Christmas tree. Should have been a sign, huh?
2) For the first time ever, Alex is scared to death of our Christmas tree! Actually, I think we are all living in a bit of fear.

The most amazing thing of all though, is how perfect that tree looked standing there all alone. It isn't any less perfect just because it fell over in the middle of my living room! It's still the same tree. It just became a little flustered when I removed it from it's normal environment. Let's face it, a tree really isn't in its element in my living room! Hmmm...

Sounds a bit like Alex. Perfect, OK that's an exaggeration, in his environment. It's not until he's hit with those unfamiliar elements that he starts, let's say, falling over in the middle of the living room.

As far as the tree goes, it's gonna take a little convincing, or a present, but Alex will think it's perfect again, too!

Wednesday, November 25, 2009

It's All Good !

Yeah for us! Our approach seemed to work, temporarily anyway. We'll take temporary, though! Things have seemed to settle down.

Dad and myself had a nice visit with Mrs. Teacher and decided that for the time being we'd just "let up" on Alex a bit. We realized that since things had been going so well, we'd started pushing him harder. We think we just overdid it. We let Alex take it easy for a while and his behavior seemed to improve as well. Thank goodness!

It was kind of funny, though. I talked to Mrs. Teacher everyday day for a week or more. Some days more than once! And not every call was a bad one, yeah! . . .

As a matter of fact, yesterday's call was funny. Mrs. Teacher was pretty impressed with Alex's social skills. By the end of the conversation, so was I. You see, Mrs. Teacher didn't realize it, but she didn't even know the whole story.

A few months ago, Alex and Twin Sis got their "must have" Face Book pages. Alex likes the idea of being a part of this thing that every one else is, but doesn't really care about doing anything with it. He only has a handful of friends on his page, and most of those are relatives, but it is HIS!

The other day, I got to visit with Alex's best friend at school. He said he was having trouble finding Alex on FB. So after Alex went to bed, I got on his FB page and found his buddy and invited him to be Alex's friend. BUT... I forgot to tell Alex that I'd done this.

Yesterday at school, Best Buddy was all excited and telling everyone in the class and Mrs. Teacher that Alex had invited him to be his friend. He told the friends all about Alex's neat pictures and that Alex had been to deer camp. This was all shared with the class before Alex got there. Wellllll.... here's where mom screwed up... and where Mrs. Teacher became impressed.

So, when Alex arrived ... remember, Best Buddy is beaming ... Mrs. Teacher asks Alex, "So, Alex, we hear you have a new Face Book friend. Who is it?" Alex names one of his FB friends, "No," Mrs. Teacher says, "Who else?" This pattern went on for a few names. Then Mrs. Teacher helped out. "How about Best Buddy?" "Oh yeah!" Alex told her.

She called me to tell me what a great conversation he'd had. She was so impressed with how he'd interacted with the class and how he had been able to name so many of his friends. In the meantime, I am feeling like a heel, I probably didn't make Best Buddy feel too great!

Mrs. Teacher about croaked when I told her that I hadn't even told Alex that he and Best Buddy were FB friends, that Alex didn't even know yet. We both laughed. She decided that was really cool that Alex had answered the way he did to protect Best Buddies feelings. She also will make sure that I hadn't hurt Best Buddy's feelings. She didn't think I had, whew!

My theory on this is a bit different. I think that Alex was just tired of discussing the issue. However, I think I am going to choose to go with hers on this one!

I am very thankful that we've got someone in our life that can so easily sway our opinion!

HAPPY THANKSGIVING EVERYONE! Be grateful for what you've got, what you don't may not be so hot either!

Saturday, November 21, 2009

Things Should Be So Simple

We have had a very rough week. Alex's anxiety level is MAXED out. Some of his impulsive behaviors caused by his anxiety have come back after years of not seeing them. He has been taught how to control this anxiety and impulsiveness, but seems to be losing his struggles to do so. As a result, Dad and I have had a pretty icky week, too. We talked to Mrs. Teacher a lot. I felt so bad for her that I actually took her a nice Merlot after Friday night. I hope it helped, a little, anyway.

Dad and I, and hopefully Mrs. Teacher, decided to take a step back for the weekend. We are going to forget about the crappy week Alex had and help him have a good, stress free weekend. We'll get back to solving problems on Monday. Odds are, they'll still be there.

We can't help but think that we've missed something or overlooked something. We are hoping that since he's gotten this far, there's gotta be something simple we can do. Anyhow, I have to try to look at things from Alex's perspective in order to solve some of these issues.

I am generally a pretty optimistic person. I know that Alex's accomplishments are very underrated by most people. So, I know we'll get through this! I can't help but thinking, though, that there is something really simple out there just waiting for me to find it.

So, while I was lying in bed last night, trying to simplify all of this, I tried to put myself in Alex's shoes. A funny thing happened. One of my favorite all time Alex stories crashed into my head! I am sure it is a sign that the answer to this week's problems will, too! Right???

Anyhow, for awhile, my stress was replaced by laughter and simplicity... so here's some laughter and simplicity for you ... I wish we all thought this way!

On Tuesday afternoons, after school, Alex has his horseback riding lessons. He loves his time on the horse. He loves the horses, the barn, the trainer, pretty much everything about it. He doesn't even mind the smell! He has been riding since he was about 18 months old. Everything he does is centered around horseback riding.

He started in a therapeutic riding program, then transitioned into a hippo therapy program. Now, he's been riding so long, he just goes and learns how to ride better. He loves it! He loves learning new things. It's pretty amazing, though, our neighbor's little dachshund pup will send him running for the hills, but that two thousand pound horse, he just can't wait to get at him!

One afternoon a while ago, I put a fountain in the front yard. Alex wanted to throw a penny in to make a wish, and well, how can you turn that down? He went in and got his penny, closed his eyes and tossed it in. I asked him what he wished for. He told me he'd wished for a horse.

Oh great! I remember the conversation vividly. It went something like this....

Alex, we don't have any where to keep a horse. "I'll put a fence in the back yard." OK, ummm... A horse cost a lot of money, I don't think we can get one now. "We can buy Champ from Miss Trainer for $20,000." I remember thinking, OH I bet we can!!!! "Well, Alex, Miss Trainer loves Champ and doesn't want to sell him. "She will." I don't think so, but you can still go out there and ride him. Besides, we don't even know how to take care of a horse."DUH, you scoop his poop and feed him hay!!"

Well, apparently, Alex has it all figured out, why can't the rest of us see things this simple ????!!!

Wednesday, November 18, 2009

...Does Basketball End?

Well, we had our second practice with the Special Olympics Basketball team last night. Disastrous is an understatement! I was trying very hard to be optimistic last week, I think I was just making excuses.

There are about twelve kids on the team. They range in age from 5th grade to 12th grade. There are all types of special needs and all types of kids represented. There are a couple of kids tooling around the court in wheelchairs, some with autism or autism spectrum disorders, some with Downs Syndrome and other special needs. Some of the kids are a bit more rambunctious than others, some pretty laid back, it's quite a mix. Actually, it is a really neat scene. Well, except from our vantage point.

We are sort of in a tail spin here. Alex loves playing playing basketball! As you may remember, Alex did not fare so well at the Special Olympics bowling tournament.(See earlier post titled What's for Lunch?) We really had high hopes for this basketball event. There wouldn't be the crowd issue. Alex loves basketball. No problems, right?

This sort of feels like we have walked into a bee hive. Alex gets so uptight that he just completely "shuts down" during these practices. His eyes turn into those dark black tunnels, his palms get sweaty, he doesn't respond to anything. We are trying to make this work... he LOVES basketball! He is doing so well managing the 8th grade team with 20 some kids -all loud, this is NOT making sense at all!!!!!!

Ugg... When things like this start happening, you start thinking about everything (and I mean everything!) that has gone wrong in all 13 years to look for a pattern or clue or anything! Sometimes, you find it. Sometimes that's good because you can make adjustments and fix it, and sometimes you find it and can't fix it or you can't find anything and well, that just sucks!

Well.. Guess what??? The good news is, we think we may have found something, the bad news is, well, let's just say bad news!

Remember a few days back I wrote about Alex swiping at the faces of a couple of elderly people when they invaded Alex Land. Well, he did it again, at school several days ago. This time, though, there was no invasion, just fear. Alex was afraid of this young lady. We don't know why. She was a visitor from the high school special education class to his special education class room. She is a very friendly and outgoing, lovely young lady. She has Downs Syndrome. Anyhow, whack went his arm.

I didn't tell you that Alex used to be in a Saturday morning bowling league for special needs kids. It was a really neat thing the bowling alley did. They made sure that all kids had the opportunity to participate in the league. It was much like this Special Olympics Team that Alex is on. It was comprised of a multitude of kids of different special needs and special attitudes. Anyhow, we participated for about a year and a half, then we quit. Alex really didn't like it and we got tired of forcing him to go.

We push Alex to do a lot of things. We figured that we'd give him a pass on this one. In the grand scheme of things did he really need to bowl? Hmmm.... If I only knew then what I think I might know now ...... ????

Now bear with me here for just a minute. Remember, too, that even though it seems like it, I haven't given you our whole life story. But I think we have had an A HA !! moment...

We know Alex doesn't like crowds, we do try to to make him last a little longer each time, but then remove him to de-stress himself. We have always known that Alex didn't like impulsive and unpredictable behavior, we try to help him through some of it, then remove him from stressful environment. We sort of thought that my grandfather scared him, we blamed the Alzheimer's and the wheelchair, and we could all only take so much of my Grandpa at the end.

I know that to some of you this might seem like a stretch. I also know that some of you might get it. But follow along...

...The A HA moment!... You see... Dad and I thought we were protecting and helping Alex through difficult times. Helping him and teaching him to cope with loud crowds. Sheltering him from kids who would impulsively yell or scream, kids that would scare Alex to death, kids that would literally make him wet himself in public. We would expose him to people in wheelchairs until Alex would rock himself so violently we were afraid he'd pull a muscle.

The thing is, while we thought we were protecting Alex, I am afraid that we were also creating some completely new problems. We worked very hard to help Alex cope with his fears and stressors and when he reached a certain limit, we just protected him from them or removed them. We also made it a priority, and I have written about this several times, to make sure Alex had friends and peers in his grade.

What we didn't realize until yesterday, is that all these years of protecting Alex and making sure he had friends, we were really segregating him from his true peers. Now all those things he has been terrified of are on the basketball court.

I have to confess, and apologize, I do feel a bit stupid here. I blindsided myself. Alex is in the special ed classroom most of the day. It just so happens that all of the kids are just like him. He is probably the lowest functioning, cognitively, of them all. But none have significant physical disabilities, none have Downs Syndrome and none have verbal outbursts.

In my attempt to help Alex through some of his difficulties, I unintentionally kept him away from a certain population group... the population group that he belongs to... kind of ironic... I think I would do the same thing again, though... hmm...

Now, as for Alex being afraid of the elderly, I choose to ignore that for now. They tend to be a bit aggressive towards kids and do invade Alex Land a lot. Besides, it's one thing at a time around here!

We've been through some very diffficult times before, and really in the grand scheme of things, this one doesn't even compare! But, this is gonna be tough, How do I desensitize a kid to kids who are just like him?...

I am open to suggestions ?????

Friday, November 13, 2009

Basketball Begins....

Well, our first week of Alex's basketball work as the 8th grade boys' team manager is over. It went amazingly well. Mrs. Teacher stayed and helped after school this week. I think Alex was pretty impressed with the team's skills. He was also very excited to be a part of something just like all the other 8th graders.

On Monday morning he spent forever choosing just the right warm ups to wear to practice. It was actually kind of funny. Apparently, he's had a growth spurt that we missed. We are definitely going to have to get that kid some longer warm ups!

He also had a pair of basketball shoes packed. Technically, they were hand me downs from Big Sis, but they were men's shoes, so they will work. I tried, for only a second, to remind him that he was the manager and just helping, so he wouldn't need the shoes... I am not sure what I was thinking there... what a waste of breath!

He reminded us several times not to pick him up after school. "I have practice," he'd say. Hehe, I secretly loved it!!

When I picked him up after practice, Mrs. Teacher had great reports. They'd had so much fun. He'd done so well. Coach was so impressed. There was so much more that Alex could do. He now had specific duties. I am really loving this!!!!

This is the 8th grade boys team. There aren't any special needs kids on the team. Alex doesn't really know any of these boys. I hope they are getting to know him and seeing that he can do the same things that they can. I want them, and their parents, to see that he is a kid, just like them! The only difference is a tiny, broken little chromosome that they can't even see! And... 8th graders don't even really know about chromosomes! For that matter, neither do a lot of their parents.

All I want is the kids to see through Alex's differences. You know, the kid in the special ed room all day, the kid who flaps his hands when he gets too nervous, the kid that starts rocking back and forth when he's uncomfortable... you get the idea! He can pass the ball back to them when they miss their shot, he can shag balls for them. He mopped the floor so they wouldn't slip on it. He can go get ice and water for them. He can keep time for them. He will take as much pride in that team's accomplishments as anyone on it, and you can bet, he will cheer them on more than anyone!!

And, now, sorry, I have to pause for a deep breath.... OK, better now!

Another component of this story that you might not remember is that Mrs. Teacher is volunteering her time to supervise this new managerial experience. What an amazing person. She's already spent all day with the kid, now another two hours... Unbelievable! Sometimes, I don't think I could stand the thought of another 10 minutes with my kids, and I don't have a choice. Mrs. Teacher did!!

I talked to her during the school day, today. Apparently, Alex was reminding her every few minutes that he had basketball tonight! I told her to use it as bribery for good behavior and to keep him on task. What I was really thinking, though, was, "Man, I hope poor Mrs. Teacher can take this! Does she have any idea what she got herself in to?" I am still not sure she knows exactly what she is dealing with! I will let her off the hook, though, as soon as I see she needs to be released. She's so good to him that I know she'll never ask to be released! I don't know how we got that lucky, but Thank God we did!

Next up is his Special Olympics basketball team, (the first practice had too many variables thrown in to make a good judgement) so we'll wait to see, then we've got the score keeping for the 8th grade team, unofficial, of course! But for now, I couldn't be happier with the way this story is beginning...

Sunday, November 8, 2009

Just One of the Boys

In a happy but annoying little way, this was one of the longest weeks ever! Last weekend, all the "grown up" boys in the family started making their plans for this year's deer hunting season. Next weekend is opening day, and in my family, that means that this weekend was "getting deer camp and deer stands ready weekend!" These guys can make a two week deer season last forever if they really wanted to.

Anyhow, last weekend during the family discussion, Alex piped in asking to go with them and then helped make the plans. He was so excited. He was going to get to hang with the Big Boys! Dad was pretty excited, too! Sometimes its hard to find things for Alex and Dad to do together. This was perfect!!!!

As I said, that was Saturday. That is important to know because the plan was to go to deer camp Saturday, a full week later.

So, on Sunday, about twenty seven times, Alex asked which day he was going to deer camp? Not until Saturday, one week away, we'd tell him... all twenty seven times. That's ok, we knew he was really excited! He didn't even have both feet in the door after school on Monday, "Is my orange vest clean yet?" "It will be.""Don't forget it!" I had the feeling that there was no way I'd be able to forget it! Tuesday, he came home wanting to know how many days were left. Oh, geez... Wednesday it was a checklist of who all was going. Unbelievable, the thought that was going into this day! Thursday was deadline day for the vest. Thank goodness I had it washed!! I think he modeled it for us most of the night! Friday, he packed. They were only going for the day, but there are things a boy needs while out in the woods! His vest, his hat, boots and snacks. I think he had it all! Needless to say, he was up with the sun on Saturday.

Alex didn't know, but there was a little bump in the road on Wednesday. Some of the "Big Boys" had decided to make other plans. Everything fell into place Saturday, though. So, all ended well. But, this happens so often to Alex, that I wanted to share it.

People are usually pretty good about including Alex in the planning of special events or activities, or even things as simple as a shopping trip. It's the following through of those plans where we seem to have difficulty!

More often than not, the plans change, or someone decides that it's just too much to take Alex with them, or that they just don't want to go. I understand that. I know this is really no big deal to most people, plans change, right? The problem is, that Alex can't understand. All he knows is that he was going to go hang with the Big Boys at deer camp and now, suddenly, he's not. One of the worst, though, is the "I'll take you next time." Alex has his problems, but he knows that "next time" never comes.

Sometimes people really convince themselves that Alex doesn't have feelings, or that maybe he'll forget. That really ticks me off! Not only does he never forget, but he does have feelings! For a reason I can't explain, his emotions and feelings are stronger and deeper than most of ours. When he is upset about something, he is upset in ways I cannot even explain, and this can last for minutes or hours or days!

I can't tell you how hard it is to watch these people let him down like that. I know it not intentional on their part, but it breaks my heart.

Alex doesn't handle change well. Let alone a change that affects his emotions the way something like this does. This would be a major let down to any kid! Think of how it affects a kid like Alex who struggles to understand the regular day to day events. Obviously, being included in this "special" day meant an awful lot to him! He talked about it and planned for it every hour of every day of the week, now depression and anger for every hour of every day for the next week. I wish people would understand that!

Emotions are a difficult area for us. Alex can't always communicate his feelings. If they are negative emotions or feelings, they usually are not communicated in an appropriate manner! This is never good! We can never seem to guess when or where the inappropriate display of emotions might rear its ugly head! If we could, the title of the blog would be "The Life of a Powerball Winner!" However, it is usually a safe bet that it will not end well!

I think I'd prefer it if people would just surprise Alex with outings. Don't tell him you are going to take him somewhere or do something with him just to appease him! He thinks you mean it! And we he realizes you don't, he goes through hell! That is a terrible way to treat any person!Especially Alex!

The good news is that everything fell into place Saturday. Alex and the Big Boys loaded all their junk into the truck and headed out to the woods! They didn't get home until after dark. I am fairly certain Alex had a good time, all he'd say was, "I'm exhausted." Exhausted is a pretty good word for him too! I did try again later at bedtime, this time the response was, "I'm bushed!" as he rolled over in bed with his back to me, I guess I'll hear the rest later.

Oh, and for the record, Alex doesn't go to deer camp during the hunt, not even to just sit with Dad. Never mind the gun issue, I am fairly certain he couldn't sit still long enough. And if a deer even got close to them, Alex would let out a scream that would have the deer running to the next state!

But for this weekend, bushed, exhausted or otherwise, Alex was just one of the boys!!!

Wednesday, November 4, 2009

One Step Forward...Two Steps Back ????

Last week I made my monthly trek to the local pharmacist. They know me very well there! Each time I go in, I am sure they are secretly hoping one of the prescriptions I am about to hand them is written for me. And some days, I am wishing it were, too!!! Surprise to all... it never is!

Anyhow, into the pharmacy we go. Alex and twin sis were with me this time. We went in the door, right inside was the sweetest man, working as a greeter. (It wasn't the BIG store either, just a small local pharmacy.) The man was exceptionally bubbly and definitely loves visiting with the customers! BUT... Alex wasn't too thrilled about the old guy's job!

The gentleman was joking and teasing Alex and twin sis. Alex was trying his best and, for lack of a better word, tolerating it very well. The man kept coming towards us and following us... Alex, you'll remember does not like people to enter his personal space! Alex was doing a great job of advocating for himself by just backing up. Our greeter was just being friendly, but he invaded Alex Land. This is never good!!

It doesn't happen often, Alex has learned how to handle these situations. But, it just wasn't working. And to make matters worse, Alex's mom sometimes gets too comfortable with Alex's accomplishments and lets her guard down, and ... well, let's just say she has slow reflexes.

Alex, however, has the reflexes of a cheetah! The moment that man invaded Alex Land, Alex swiped at the poor guy's face! The man's glasses went flying! Ugggg.... I hate that feeling. I hate the feeling that I know Alex has! I hate that horrible look in Alex's eyes! Alex feels so guilty, the man is stunned, I am, ummm... lots of things!

I apologize to the guy, quickly try to explain, try to calm Alex, try to calm myself. What just happened? Alex hasn't done that for ages. I am mad at the old guy for being too nice. I am mad at myself for not anticipating that this could happen. I am mad at Alex for regressing. OK. Nothing here is good.... Deep breath... Maybe another one.....

Hey! Alex lasted for several minutes with this guy being overly close and in his personal space, Alex put his hands in his pockets and stepped back, just like he was supposed to. OK, not soooo bad. Unless your child has an extreme anxiety issue, or other special need, you are just going to have to work with me on this one, folks! Actually, what Alex had done before he swiped at the guy was really good! And it took a lot of years to get there!

The part about this that really stinks, is that the old guy at the pharmacy will never know that! He will just remember the kid that hit him. I have to confess here... this makes me cry... I haven't made myself cry yet, so this, well, sucks! That's not the real Alex. I am very thankful that there are so many people that do know the real Alex, but the one that doesn't, the guy at the pharmacy, that hurts.

This has happened before. It usually only happens when Alex is startled by someone he doesn't know, or if he is really scared, or if, well someone pops into Alex Land uninvited. But it hasn't happened for over a year. It is not a mean or aggressive move by Alex, just an uncontrollable reaction to a situation that Alex can't control. He had used all of the self control techniques he could and basically, just ran out of options.

I don't like to make myself cry, so I do have a point here. Most people don't realize how many years of very hard work and how much self control Alex exerted that day. Years of therapies, medications, doctors visits, specialists, Alex has worked so hard on is coping skills. Don't get me wrong, I wish he'd have had just a little more in him, and I know he wishes that, too! But he did let that man that he had never seen before, stay very close to him and tap him on the arm and tease him for several minutes. What the rest of the world saw as a kid hitting an old man, actually has quite a different story.

It still hurts, but when I look back, I see Alex swatting at that man, but I also see Alex stressing over the situation, Alex being terrified, Alex stepping back, Alex maintaining his self control, Alex's muscles tightening, his teeth grinding, him being unable to breath, and all the while, the man still there. The bad part was a spit second reaction after several minutes of extreme self control. I just wish everyone else could see that.

What everyone else might see as a failure, also has many positives. Parents of kids with special needs just have to look a little bit harder to see their kids' accomplishments. Many of the things Alex's peers do on a daily basis, are actually HUGE accomplishments for Alex and kids like him.

The rest of the world needs to be reminded that sometimes the snapshot they take don't tell very much of the story.

There are always positives, sometimes, we just have to look really hard!

Sunday, November 1, 2009

Thank you, Mr. Asst.Principal, Mrs. Teacher, Mrs. Paras

On Friday morning our phone rang. It was the twins' school. Sometimes, caller id is a curse. "Oh brother, what's happened now?" I thought. It was so early, a part of me didn't even want to answer it. But I am a mom, I must!

"Hello, Alex's mom, this is Mr. Asst.Principal." Oh geez, this is gonna be a long day! The poor guy, he knew what I was thinking and immediately saved me.
"I have an idea," he said.

OK. I've written about school difficulties and my school district in particular. Parents of special needs children do not get things done easily. We have had to fight tooth and nail for the most basic of needs. Many people don't understand this, but if you have a child with special needs, you know what I am talking about.

This is Alex's second year at the middle school. We had to establish a few things when we first started at this school. But this school has been an unbelievable experience for Alex, twin sis, dad and me! I'd like to think the school has enjoyed our family, too, but even if they haven't the personnel have played along very nicely! It's amazing how different one school can be when compared to others in the same district. This particular school has formed a very nice community.

Back in September, at our IEP meeting, I asked the school's IEP representatives to find away to get Alex involved with his peers. I strongly suggested some extracurricular activities, especially sports. He needs some friends when he goes over to the high school. He could be a team manager with some assistance or maybe the team photographer. Anyhow, I made some suggestions, and then I waited. I am not real good at waiting, but this one was sort of out of my control so I was willing to wait and see.

Anyhow, back to the phone call and Mr. Asst.Principal's idea... The basketball coach has never had a team manager, but he'd let Alex do it, as long as he had some guidance. And Mrs. Teacher (Alex's teacher) had volunteered her time to help Alex be the basketball team manager. And Mrs. Process Coordinator wants Alex to help her keep score during all the games.

"What do you think, Alex's mom?"

Wait a minute! Let me get this straight. I asked for something, only once mind you, and it is not exactly a basic need, but sort of the icing on the cake, and your idea is to do it, and an already underpaid overworked teacher is volunteering her time after school so Alex can spend some time with peers?

Umm, I think I am going to have to get back to you on that!!

This is unbelievable! This is a very good thing these people are doing for Alex. This is the first time the teachers and administrators have chosen to do the right thing. Not only that, they are going above and beyond the expected. We have had good caring teachers and paras before. We have just never had an experience where all the people immediately involved with Alex's education have chosen to do the right thing! Don't get me wrong this middle school was exceptionally cooperative last year, but this is big!

In our past experiences, if the para wanted to do something good, the teacher or principal would squash it. If the teacher had a good idea or plan, the process coordinator or principal wouldn't allow it to proceed. We never got any good explanation as to why, usually it was just a "we don't do that." This school district is sort of known for that.

This middle school has been amazing from the start. They are proactive. They are caring. These people are genuinely interested in Alex's future. The most amazing thing, though, is that in an educational setting, they are all willing to all work together to make one kid's life a little bit better.

The other thing about this is that these people don't even realize how great a thing this is! Alex has been attending this district for 10 years. Big sis graduated from here. There is a pretty tight group of very informed parents of kids with special needs. I know this doesn't happen at the other schools. When it does, it is the exception, not the rule. I also know that when it does, those parents didn't ask just once!

"Oh, Mr. Asst.Principal, I think that will be fantastic! Mrs. Teacher, Mrs. Process Coordinator, and Mrs. Paras, we are not real sure how to thank you."

Should I start being treated now for the breakdown I am going to have when I have to move Alex away from this group of people next spring. I know we'll never be this fortunate again, but I am very happy for all the kids that will be!