Thursday, December 23, 2010

Coming Clean to a Perfect Christmas

Christmas is here! I have always loved the holidays. My house always has more "stuff" out for Christmas than I have room for. It's not the Martha Stewart variety stuff either. Its the walking talking Santa Clauses and the singing reindeer. My Christmas trees are decorated with every home made ornament my kids have ever created. My friends with finer tastes called it the "crap tree". It's a real tree, too, I've always believed Santa needs a real tree and sticky needles to put the presents under.

I have always had a very traditional Christmas - ridiculously traditional. My kids' Christmas's are exactly the same as mine were when I was a kid. Christmas eve we go to the candle light service at church, come home have some snacks, then kids off to bed. Once kids are in bed, the adults spend hours feverishly wrapping the presents to get them under the tree. We truly believe that part of Christmas is waiting until the last minute. - I have been trying to change that part the past couple of years!

Christmas morning, EVERY Christmas morning, we have pictures of the kids climbing the stairs in their pjs heading to the tree. They race to their presents, Santa's are always wrapped in red and are ALWAYS the best ones, they rip them open and paper flies everywhere! This has always been my favorite part. I don't think a kid needs to be reserved and polite when it comes to Santa's gifts! I think Christmas is the perfect time for a kid to just be a kid! I love the Christmas chaos! After the Santa gifts, they move on to the rest of the presents.

Then it's the adults turn. The kids take turns playing Santa and passing out the gifts. The newest adult family members are always astounded at this part of the morning, the adults tear through their presents just like the kids! It is awesome! I know some people think it's awful, but I've always loved it!

Then we sit down for breakfast, some of the adults assembling the kids' new presents, nap time for the others until the big family meal. I have had the same Christmas for all but two years of my life. Before I had my kids, it was always at my parents' home with my siblings. After I had my kids, Christmas morning was always here with all my family and sometimes even my in-laws.

This year we are changing it up! After more than forty years of tradition, I am going to have a completely different Christmas! I am very excited about it, but at the same time, a somewhat bittersweet. Dad, Alex, Twin Sis and Myself are taking a vacation. Leaving our home for the holidays.

This is where I come clean, the bittersweet part. You see, the other reason I stayed away from writing for so long is because the last post before my long break was about Alex's sisters.

I had written about how protective they were of Alex and how close they were. Well, early in the summer, Big Sis moved out. She left on bad terms. She moved in with other family members. She didn't call home for weeks. My entire extended family became involved, and Alex and Twin Sis no longer want to see her and are scared to death of the extended family. I won't share all of the ugly details here.

Dad and I tried to encourage the kids to maintain a relationship with their sister, but they asked us to stop forcing them to see her. As far as the extended family, again, it is a choice made by Alex and Twin Sis, but Dad and I are fully comfortable with their decision.

Unfortunately for you, though, I will offer some unsolicited advice. As I have told you before, Big Sis was six when the Twins were born, an only child, grandchild and niece for all those years. Then, not only was her life interrupted by a sibling, but the chaos of twins, and on top of that, one with special needs that required a lot of extra attention. Big Sis did get knocked off her perch, we knew it then, we tried to compensate for it. She resented it and we knew it. We thought we handled it, but we didn't. Big Sis is in college now. I think her resentment and jealousy are behind this blowup. I don't think it is entirely conscious, though. Who knows when or if she might come around? I can't second guess the way we did things. We were definitely in uncharted territory. I do know now some things I would have done differently. I know what mistakes not to make with Twin Sis!

One big mistake we made is that we ignored the outside environment. Watch those around you. Remember, Big Sis was the only child in their lives as well. Other people don't understand why a special needs child needs extra attention, even family members. They will resent you also. I've said before that it seemed like my "Rocks" understood Alex better than some of the family... well, it turns out that they do! (Thank you Rocks and Rock Babies!!!) The extended family does not understand how we could "abandon" our other children to take care of our Fragile X child. Always remember, NO ONE KNOWS UNLESS THEY HAVE LIVED IT. Believe it or not, othher people do convey their feelings to your children, and eventually, your children will believe them.

OK... no more advice or grumbling....

Anyhow, that is what kept me from my writing for so long. Ironic how one of my last posts was on the siblings, I guess I couldn't see through the fog. We have mostly come to terms and are coping with our new family arrangement. We have our highs and lows, we didn't see this coming. We never expected Bis Sis and my family to behave the way they have. But the fact of the matter is that they did. We will always be our daughter's parents if she decides she wants us. Until then all will be fine. There are many people dealing with much worse situations!

With all this going on, our oldest daughter not being her, and there being no chance of ever having THAT Christmas again, we decided we should just start a new one! We have so many good things going on that we will focus on those... So, we are going to travel!

We are going to a place that is new to all of us. We rented has beautiful views of the mountains. It offers opportunities not available here in Missouri. We will be making new memories instead of dwelling on the old!

We are going to try to teach Alex and Twin Sis how to ski! That ought to be an interesting day! At the very least, it ought to be a very funny Christmas, as Dad is a TERRIBLE skier, and I haven't skied in years. Our house is remote enough that we may be able to spot some wildlife, and maybe do some snowmobiling. Anyhow, it will be a lot of fun! I do already know that next year we will be a warm climate vacation. I am already freezing my butt off here in Missouri!

I have decided though, that what I always thought was the perfect Christmas wasn't really. The PERFECT Christmas is on its way, it's whatever I decide to make it!

Know that what you have is perfect ... and laugh lots. MERRY PERFECT CHRISTMAS !!!!

Friday, December 17, 2010

High School Brought Out the Crazy

Wow, it's been almost eight months since my last post! As I read the last couple of entries it seems like those few months were a lifetime ago! It's amazing how quickly and drastically things change.

I didn't intentionally quit writing. I blew up another computer, then one day lead to another, then things just kept happening and I never could quite get back to it. My "Rocks" are probably going to be happy to see that I am writing again... remember?.... it's therapeutic, so now, maybe, I will leave them alone! My family has had a rough few months, so my Rocks have been busy.

As I looked back, so many of my posts have been about Alex's success at school. Middle School was very good to us. We miss Mrs. Teacher terribly. But, as it does each year, school ended, and this fall Alex and Twin Sis started high school. Uuuggggg.....For those of you with kids, high school is a big transition. For those of you that have a child with special needs, the word transition doesn't even come close!

Alex started off his school year so overwrought with anxiety that our lives were miserable. His days were even worse. New teachers, paras, a new school.. all of our favorite things!! Alex was so terrified that he wouldn't be able to control his anxiety that he became withdrawn.

Alex was rocking constantly, 24/7, not just at the times that should be high stress times for him, but all the time. He was rocking so violently that he broke the springs in the sofa. He wouldn't even eat dinner with us, he would wait until we were all done and then go to the table and eat by himself. Alex never wanted to leave the house. It broke Dad's and mine hearts. Even Twin Sis didn't know how to help him, and she ALWAYS KNOWS.

Alex wore himself out every day at school trying so hard to keep himself together. He got to the point where he would come home from school and want to go to bed. He was trying to keep himself in control at school, he was just killing himself while doing so. You see, when Alex loses control, he lashes out and pokes the face of whoever it is that's in "his space." Alex made it through the first five days of school!! Yeah!! But then it happened, just like always, EXCEPT....

We have a new principal, and well, let's just say it was UGLY!!! On the sixth day of school Principal Man informed Dad and I that Alex was suspended for ten days, Out of School! Alex had lashed out at his para. Principal Man chose to believe that Alex assaulted a staff member. Ummm... Nothing about Alex is aggressive! This behavior, by the way, is documented in Alex's IEP no less than 600 times! This is anxiety, this is Fragile X, this is ALEX!

Don't get me wrong, this is not acceptable behavior. This is part of his disability, though. This is a big part of why Alex is in special education classes. This is part of the school's job.

I had a few questions for Principal Man. Shocker, huh??? "Do you have any knowledge of Alex's special needs?" "Have you met Alex?" "Did you talk to his para or teacher about him in general and this incident?" "Do you know his diagnosis?" "Have you seen Alex's IEP?"...blah, blah, blah... He had some answers too. "No." "No." "No." "No." "No." ...blah, blah, blah...

Ok, now, let's just say Principal Man and I went on to have a discussion that would make a group of sailor's ears burn! And when he didn't listen, I went to everyone else in the school district, Alex was back in school the next day. Principal Man was NOT very happy. I was! But what a way to start a school year! Boy, was I screwed!

I am not sure who else in this world has seen that ever-so-attractive side of me, I know my husband hadn't. I am not sure what color his face was that day in Principal Man's office, but it just wasn't right. He seems to have recovered, though. Surprisingly, I do hope that side of me stays well buried! It scared the crap out of me! Don't get me wrong, I am advocate numero uno, but WOW!

The good news about our little fiasco is that with the help of all the school personnel and all our doctors and all our therapists, OUR Alex is back! He still struggles some, but is getting better and better at controlling his anxiety. Anxiety is NOT controlling him! It took us ALL a few months of working together, trial and error, and lots of patience, but hopefully we have found a solution.

The even bigger story here, though, is that despite two people's complete and utter craziness and bullheadedness, Principal Man and I have been able to come together and help Alex, and hopefully other students, too.

I had never been so blindsided as I was when Principal Man wanted to suspend Alex for a behavior that is directly related to his disability. He wasn't going to budge on the suspension, he didn't know Alex, he didn't know Fragile X Syndrome and he didn't seem to know much about the special education classes and students at all. Obviously, I wasn't budging, either!

I admit I was upset at hearing that Alex was going to be suspended.... Alright, REALLY UPSET! But I really, really did start our conversation relatively calm and mostly professional. I am not sure what happened that made me go crazy on Principal Man, maybe when I realized that he just didn't consider the student or special circumstances surrounding this student. I remember Principal Man telling me that I would "just have to respect his decision", I was so out of my mind that I told him that "I couldn't do that because it was an uneducated stupid one!"

Yeah.. yeah.. genius, I know! Feel free to use it!

I think in those few minutes, we both let out our "crazy" persons. The thing about it is, that in doing so, I don't think that Principal Man will ever make a decision like that without thinking first, of that completely crazy - and I am really using that term loosely - lady that stormed into his office. From that moment on, Principal Man has taken the needs and best interest of Alex and put them first every time something has come up. He has also done that with the other special education students and I will bet he is taking a bit more time with each student that comes to him.

Principal Man has also gone to great lengths to learn about the unique characteristics and needs of his students. Maybe that crazy lady made a point!

Who knew that two such vicious adversaries in the heat of battle could become such good partners and advocates for Alex? And again, who knew that such a disastrous moment could motivate a person to take such a special interest in other people, especially in special needs children.

Ironically, I have become very comfortable with Principal Man looking out for the best interests of both Alex and Twin Sis. Thank you Principal Man!!

Oh... and as far as that really crazy lady goes, she doesn't apologize, but promises to try really hard to stay hidden! Even I learned a few things that awful day!

Wednesday, March 24, 2010

Special Siblings

I have been off for awhile "working" with the school district. You know, one of those struggles that makes you physically sick every day because you fear you might not get the decision makers to see things from your perspective. Ironic because no one can see things from a special needs parent's perspective, but we have to spend hours trying to convey it to a bunch of strangers anyway. The good news is that the discussions are over and my concerns and point of view have been heard, so at this point, it looks as though the school will be acting in the best interest of the kids, especially Alex's! Yeah!

Well, aside from the giant school issues, we had a nice visit from Big Sis. Home from college for the first time in awhile. I think she was just wanting to collect her birthday gifts. Still, it is so fun to watch Alex and Big Sis, for awhile anyway. Alex, of course, has his limits, and when he is done with something (or someone) he is DONE. So, their interactions come in short bursts.

Ever since I found out I was pregnant with twins, I have been intrigued by all the theories and ideas floating around on sibling relationships. Big Sis is 6 years older than the twins, so that created an interesting dynamic on its own. Then, we found out Alex had Fragile X Syndrome, so we kind of wrote our own book on sibling relationships. I just wish I could understand it all.

Big Sis was obviously an only child for six years, then got bombarded by having to share her life with not only a brother or sister, but both, at once! On the one hand, she was spoiled rotten as an only child - and only grandchild on one side - for six whole years, but boy did she get blasted out of the water by twins! There had never been twins on either side of our family, so that was quite a shocker and boy, did the center of attention shift quickly.

Big Sis loves Alex, she is very protective. If she gets wind that something happened at school, she is in my face wanting to know what I am going to do about it. He is the first one she wants to talk to when she calls home. She is also one of his biggest fans. She relishes in his successes and pushes him to succeed just like the rest of us. Big Sis laughs hardest at Alex's jokes, even though most of the time they don't make sense. Big Sis is and always has been very impatient, I think that comes from being the only child for so long, but with Alex, she can wait forever. Big Sis is very sensitive and compassionate. I think Alex taught her that. She is going to be a teacher, again, I have a feeling Alex has a little something to do with that decision.

There are times, though, that I know it is and has been difficult for her to have him around. It is hard for her to share that part of her life with anyone but her closest friends. That has to be difficult, too, because her little brother is a big part of her life. She doesn't admit it, she may not even be conscious of it, but I know his behavior and outbursts are embarrassing to her. I can only imagine how hard it was during her middle school and high school years.

Even I have to admit, there are times when I am embarrassed by something Alex does. After all these years, he can still get to me. We have worked really hard to make sure Alex knows it is not appropriate to pass gas in public, but sometimes when he's anxious, like in the middle of an aisle at Lowe's, he just can't control it. It is embarrassing, but I choose to go hide somewhere and laugh til I cry, it's my favorite coping mechanism. Now I am obviously? a mature adult who has developed very complex coping strategies, but this kind of situation would be terribly embarrassing for a teenage girl. Imagine a college girl trying to make a new life for herself with her 13 year old brother passing gas all through Lowe's. Again, I would laugh, most people in this situation would crawl in a hole and hide. (I also call this choosing my battles!)

Twin Sis and Alex's relationship is entirely different. She and he are best friends. She does know that he has Fragile X Syndrome and has certain limitations. She knows that, but she doesn't really see it. She includes him in everything she does. If for some reason he can't do something, she does it for him without even realizing it.

She advocates for him at school. She makes sure kids are nice to him. She is the first to call somebody out for mistreating her brother. The thing about her is, she doesn't want to be the one "seen" doing the advocating. She just doesn't understand why people say bad things about Alex or his friends just because they have some type of special need.

Twin Sis' relationship and view of her brother is almost completely opposite than that of Big Sis. Twin Sis doesn't see that Alex is any different than she or any other kid. Big Sis pretends not to see the difference, but knows it's there.

I know, there are so many factors in play; birth order, sexes, twins, the kids' ages, blah, blah, blah ...

All I know is that our girls are two very good sisters to Alex! We are very fortunate that things worked out they way they did. Alex is one lucky kid! The funny thing is Big Sis and Twin Sis know they are pretty lucky, too!

I just wish I could figure out this sibling relationship thing, Big Sis and Twin Sis' relationship looks nothing like either of their bonds with Alex!

Thursday, March 4, 2010

Choose Your Words Carefully ~~ Especially the R- Word

Sorry, folks! Soap box day !

Well, yesterday was the annual End the R-Word Day. The Special Olympics sponsored program had over 100,000 people sign the pledge to stop using the r-word. While it's nice to have a day of attention, it should only be the beginning. People should always be thoughtful of the words they choose.

My personal take on the word retarded is that it is a clinical term, mentally retarded describes a person's mental capabilities. Any other use of the word is just not good grammar. It's irresponsible to use the word outside of a clinical setting. Period!

As a parent of a special needs child with mental disabilities, I am pretty sensitive to the use of the word retard and I am not going to bore you with another story about it. You can read my first one if you'd like.

But don't stop there. Over the last few weeks, some pretty public people (and the political ones don't count) have shared some amazing stories on behalf of the Special Olympics campaign to End the R-Word. There is a button on my blog for you to go view some of those videos on their site. (Sign the pledge while you are there! )Here is one, though that threw me for a loop. Never in my wildest dreams could I have seen this one coming.

If Johnny Knoxville gets it, why doesn't every one else?

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


Tuesday, January 19, 2010

On the Edge of the Team

Today is going to be a two parter, the before and after. Not for any particular reason, just to be exciting. Actually, I think the before part is sort of my therapy, you know, the Vicadin they give you before a particularly stressful dentist appointment. Let's look at it that way. . .

I've written before about Alex being the manager for the basketball team at school. I don't know that he is especially useful to them, but the coaches and the kids let him hang out with them during practices. It's really one of the rare times he gets to be with kids outside his special ed class. He loves doing this. During the home games he keeps score, very unofficial score.

The only reason this activity is even available to Alex is because Mrs. Teacher made it so. I've told you before about this amazing person we have been blessed with. In case you haven't read my prior posts, Mrs. Teacher volunteers all her time to be with Alex at these practices. Did you get that? VOLUNTEERS !!

Well, a few days ago, this fantabulous Mrs. Teacher of ours, lost her mind ! She came to Alex's Dad and I with this great idea. She wanted to take Alex to an away game on the team bus. On the bus. 8th grade BOY'S basketball team. Away Game. Here's how we knew she'd really lost it . . . "I just think he should experience the whole thing. He'll love it!"

OK, I haven't told you everything about Mrs. Teacher. You already know that she is the most beautiful angelic person on this planet as far as we are concerned. But, she is also, the most beautiful, angelic person to people who don't know her. Get it?

So, when this idea comes up, so many things start racing through my mind. Alex doesn't ride the bus very often, and when he does, it is with his classmates that he knows well and is comfortable with. Then, there's his whole overall anxiety thing. A different gym? He leaves the home games early half the time. No telling how nervous he could get in an unfamiliar setting with an unfamiliar crowd. . . and with all that, no telling how he will react! Oh man, too much stress!

That's not all, though. I also have this fear that Mrs. Teacher, as wonderful is she is, doesn't really have any idea what she is getting herself into. Sure she's ridden a bus and been around kids. But twenty five boys on a bus with HER. I kept getting this picture in my head of all the boys on the bus and her gliding up the steps . . . It was like a commercial in my head, maybe for shampoo or something!

Anyhow, of course, this is a great opportunity for Alex to spread his wings! Mrs. Teacher is sometimes (OK, a lot of times!) better than us at seeing what is good for him! So guess where Alex is going tonight?

We do have an escape plan built in. You know the one, mom follows bus, sits at game, blah, blah, blah . . . I'll be back in a few hours to let you know how it went!

Well, well, well . . . as Alex likes to say. What a perfect evening. The only bad thing about it is that my backside hurts from the bleachers!

According to Mrs. Spectacular Teacher, Alex was a bit reserved on the bus ride to the game. Once they arrived at the school, he had a little snack (which is very important to Alex) while the team changed into their uniforms, then settled in behind the bench to take stats and photos. At some point during one of the games, they play two games, Alex told Mrs. Teacher that he wanted to stay for both games and ride the bus home with the team.

Unbelievable! Now, odds are 100-1 that the stats aren't right, but he did it! And he stayed for both the games. He even took some pictures with his new camera for the school newspaper. Quite a few of them are good, too!

From what I gathered, Alex did quite a bit of visiting with the coaches on the ride home. Great, no telling what I am going to have to explain to them !

Thanks to Mrs. Teacher, Alex got to do something that most every other boy gets to do at some point in his life. He's not quite a part of the team, but now, he's on the edge of it! And we thought she was crazy !

Tuesday, January 12, 2010

A Will ? . . . Now ?

Today I am gonna be selfish. Today I am writing all about me. Today was supposed to be a day about Alex and his sisters, but I just can't quite make it about them. At least I can admit it, it's all about me!

You see, today was our meeting with our attorney to draw up our wills and special needs trust. We've been putting it off for years. Don't start yapping at me! We know it should have been done years ago. We just haven't been able to agree on who could take care of the kids the way we want them to be taken care of, especially Alex. Not only that, but it's not like there is a huge estate that needs to be divided!!

And NO, there is nothing wrong with either of us, well medically speaking anyways. We just decided that it was time, way past time, to do this!

Anyhow, we get to the attorney's office, still not sold on the guardianship issue, and man, things just got worse! The good news is that we've put this off long enough that Big Sis is 19, so she's an adult. I just gotta give her some money! Boy, is she going to be disappointed!

She is also old enough to be appointed guardian of Alex and Twin Sis. That is sort of a good thing, but she's is a college kid. I can't do that to a college kid! No matter how mad this particular college kid can make me! So, what to do in the interim?

Well, we filled in the blanks. I'm not happy about it. But not for the reason you might think!

You see, it's not that I won't be around to see them grow up. I am truly convinced that somehow I will. I know that I will be with the girls at their weddings and when they have kids. I'll be able to see Alex at his big horse show and at his first job. I don't exactly know how it will work, I just know that somehow, in someway, I will be there with them, even if I'm really not.

This may be a bit disturbing to some of you. But I know that Bis Sis is old enough to take care of herself. Twin Sis will be okay, too. The part that just sends me over the edge, as far as guardianship, is who would fight like me to get Alex what he needs at an IEP meeting I might miss? or to get an employer to hire Alex and help him succeed? For some reason, I have had all these meetings in my head, over and over. (I think I have too much time on my hands!)I have put every person I know in my shoes. As much as I, and Alex, love these people (well ... most of them!) NONE of them are would handle these meetings MY way.

Now, those of you that know me understand. Those of you that don't, here is Alex's Mom in a nutshell. There are always two options, mine or the other one. One is right and the other is wrong, VERY VERY WRONG! Guess which one is RIGHT? Do you see my predicament? Not only is my way the right way, I will fight to the death to see it through. Hmmm... That is gonna cause some problems here.....

Alex's Dad and I are very lucky. There are so many people out there who care very deeply for Alex and his Sisters. I know every one of the names that I could put in that blank would take very good care of Alex and both of our girls for as long as they live.

Can I help it that it upsets me that no one would do it MY WAY ?

I hate to admit it, and I am hoping he doesn't read this, but Alex's Dad put it to me very nicely. "No body's going to handle those meetings and things the way you do because no one else has lived with Alex." (I chose to believe that was a compliment to me and MY WAYS!) "Anyone we choose is going to make sure that he is taken care of very well and that he gets everything he needs and that we want for him!" I know he's right, that is how they made our short list!

I guess in the long run, it's not really how you get there, just that you get there! Everyone will make sure my kids reach their goal lines!

Maybe now, I can stop having meetings in my head and just go fill in that stupid blank! If only I had done this years ago when a responsible parent would have..... back before I knew what an IEP meeting was, back when I just needed to chose someone that I knew would love my kids!

OK... Lesson learned. And will completed. Now I just need to build up a nice estate!

Wednesday, January 6, 2010

Road Map to Success

I hope everyone had a good holiday! We have had some snow storms and very cold weather here, so the kids are getting an extra long holiday break!

I haven't been able to write since Christmas, as my computer crashed. I don't know anything about computers, but I did learn that the message it gave me was basically the equivalent of your computer is dead! So, tonight I am working on a borrowed one. It seems to work the same......

The other day I was talking to a friend of mine whose kids both have some minor speech concerns. She was researching different diagnoses and treatments. It made me start thinking about some things... and that is never good!

I was thinking about labels. We label everything, we label everyone. That's the part I hate! The way we label people. Obviously, it's not all labels I despise! I'd love to be labeled "the hot chick!" That's one I wouldn't hate! I won't hold my breath for it, though! "The fat one," that's a label I hate. Anyhow, you get the picture.

My mind really got in a flurry when I started thinking about the labels put on kids, particularly special needs kids. Remember, Alex and Twins Sis are in Middle School, so labels are important. I started thinking about who put those stupid labels on Alex and why.

Let me start with the labels I am talking about. Of course we know Alex is the Sped Kid, the one who has to go to speech because he can't talk right, the kid that goes to those special classes, the kid that rides the short bus and the one I wrote about before but won't use, the R-word. That's just a few. Twin Sis and Big Sis have them to. You know what I mean, "the girl whose brother blah, blah,blah...".

It seems like all the kids in middle school fit into some sort of category. They aren't all bad, it is just sort of sad.

The categories that Alex generally fits into, always seem to to be the ones that the other kids love to hate! This, of course, means the girls get the negative labels attached to them, too. When I hear people talk about, or to my kids in this way, it not only hurts, but it makes me angry. And I am one mean momma!

Anyhow, during all this deep thinking, I had another one of those aha! moments! Great . . . usually, just shortly after that aha!, I realize... I am an idiot! For the record, it is only for that one second, that I ever think this about myself, and it is only here, for this one minute, that I admit to ever doubting myself !! :D

All of a sudden it hit me, Alex's Dad and I had given all three kids these hurtful labels. What an awful gift to give your children, right? Well, here's the deal. Alex is the Sped Kid! We made him the Sped Kid! We did it when he was very little! We did it on purpose! We would do it again! Alex is better for it! Alex's Dad and I are better for it! Big Sis and Twin Sis don't realize it yet, but they are better for it!

By being the Sped Kid, Alex's Dad and I have given him the chance to learn things that he would never be able to learn in a regular classroom. By forcing him to be the kid who goes to speech because he can't talk, we are giving him the opportunity to learn to talk better when he is older. That's a much better way to look at things, isn't it? Actually, that's not just an appearance that's the fact of the matter.

Everyone has a weakness. We chose to aggressively treat Alex's weaknesses so that his life would be the best it could be. Just think if everyone chose to treat their weaknesses how many labels there would be. Maybe then, none of them would be treated as a negative one!

My one and only New Year's Resolution is to make myself remember this. I am really not overly sensitive to the matter, I just don't like to see people hurt my kids. I do get my feelings hurt on occasion, also. But from now on, I am going to remind myself that as painful as these may sound now, these labels are actually Alex's road map to success!

Now all I have to do is sell this to the 850 middle schoolers at the twins' school. That's the answer! I can hear it now! "Stop picking on him! It's his ROAD MAP TO SUCCESS!!! " Then maybe a kid can just be a kid!