Wednesday, October 28, 2009

A Celebrity Among Us

Today was a big day for Alex and twin sis, Parent Teacher Conferences! In our school district they have what they call student led conferences. They started these when the kids were in about 4th grade. I have to say, I have always hated them!! The idea is that our child leads the discussion and shows us all their work, discusses their strengths and weaknesses, and in the end, show us their grade card! The teacher stands across the room.

I don't know about the rest of you, but I feel like I get this everyday at home. I want to go visit with the teachers and get the real scoop!! Does she talk all the time, does Alex pass gas all day long, does he only talk to the girls, is it true that my kid never shuts up? Oh.... and by the way, how are their grades? I guess I'll just have to get the good info elsewhere.

Today's conferences started with sis. Of course Alex was all over it, pointing out every red mark on every paper or project. "Oooo, that's gonna be an F," he'd say over and over. (and over and over.) Sis does take it very well. Never once did she tell him to sit down and shut up! Pretty good, I'd say! And for the record, she had very good grades! :)

Next, off to Alex's conference. Of course the special education class is at the opposite side of the school, so we walked the loop to his class. He walked behind, hurrying us along, never mind that we were actually on time, for once. Constantly chastising me for being last.

The school building was full of kids and their families, the teachers and staff, just a bunch of bodies. This kid, though, knows everyone! All the way through the building people were hollering and high fiving Alex, both kids and adults, I don't know who they were. I know what some of you are thinking, but yeah, I let my kids talk to strangers! I was just thrilled to death that he knew people and that people were being nice to him. And so many of them!

One of Alex's greatest obstacles is his anxiety, remember the bowling alley? We have tried everything to put him in situations where he would be with peers and be able to develop some friendships. We decided a while ago that no matter what the outcome of his social life, in the end we were successful, just for having tried.

Now, Alex has made some friends at school, some in his special ed class, some are the girls who started looking out for him years ago. Outside of school, his best friend is his horse and twin sis, and that is fabulous! And successful! Eleven and a half years ago, we were terrified he would have no one. Again... are we lucky or what?!

I think, that is why I was so amazed at all the people greeting him today. I am very involved in the PTA at school, volunteer with other projects at that school, work at the dances and the concession stand at the sporting events...You are going to find this hard to believe, but I am a pretty visible parent at this school! Yet, not one of these people were high fiving Alex's mom! OK, I was jealous! But also thinking pretty highly of myself, "wow, I have one awesome kid, everybody loves him!"

OK... on to the conference.... Alex's wasn't too keen on us all sitting around talking about him, so he just handed one of his projects to his dad, then gave me one of his papers, then went right to the bottom of the stack for the grade card. That's my boy, go straight to the finale!! All A's! Boy did he make sure everyone knew it! Now he's done.

That's the other thing about Alex, when he is done, HE IS DONE! So we said our goodbyes, and headed home.

The car had barely started when Alex started his pleading. Can we go to out to eat? He asked to go to every restaurant within 30 miles of here. "Puhleeease?, I did sooo good." And man can he stick that bottom lip out. We only live ten minutes from school but it is amazing how many restaurants a kid can come up with in that amount of time! We'll go celebrate, just not tonight.

It was sometime during that drive that it hit me. I used to substitute teach, I was the assistant director at a large daycare for ten years, man was I an idiot. Alex didn't know those people, they knew Alex! .... And there is a difference! There is only one reason that many people remember a kid's name. He's the ornery one! I am pretty sure he's not a trouble maker. Anyway, ornery is the safer bet. Oh man.... my balloon just burst!! Talk about deflated, here I had been thinking everybody loves Alex!! Uuuugggg...

Later, I was thinking and moping about the day. I started focusing on the people that I knew and how they had related to Alex. I thought about how some of the faculty that I do know had reacted to him. I made a decision... a decision to reverse my decision.... and I don't do that to myself very often, so I am sure that I am right on this one! Alex DOES know these people! Everybody loves Alex! I was right!

You see, it's all in how you decide to look at it! Sometimes, look twice!

When we were walking the halls today, we had a celebrity among us!!!!

Thursday, October 22, 2009

The Best Therapist

Today I had a major breakthrough! I don't know if I mentioned it before, but Alex is a twin, he has a sister. She doesn't have any special needs or prevalence of Fragile X Syndrome. She may be a carrier of the disease, we don't know yet.

I will never forget that day in the doctor's office when he told us we were going to have twins! When the doctor gave my husband and I the news, all I can remember is uncontrollable laughter billowing from the both of us. I am amazed that they didn't take us away in straight jackets. We still don't know why we burst out laughing. I guess we just didn't know what else to do!

You see, there is no history of multiples in either of our families. We had never, in our wildest dreams, expected twins. What a shocker that was! Fortunately, our daughter was 5 at the time, we'd have never made it if she'd been any younger! But now, thirteen years later, it is perfectly clear. What a plan! I am not going to lie, it took us awhile to appreciate the irony!

As you can imagine, our life with twins was chaotic. I must confess, I am not the most organized person, and I am a person who requires 12 hours of sleep to function. Not ideal qualities to be a mother of twins. And my twins, they gave us a run for the money!! I think we were always in a state of frenzy! Someday, I might share some of their stunts.

By the time Alex was finally diagnosed with Fragile X Syndrome, our house was crazy! We had a daughter in kindergarten and 16 month old twins. Now we find out that Alex will be needing therapists by the billions..... :) It seemed that way at the time! We made all the arrangements. And in and out of the house they came, and in and out of the centers we went. We never missed any appointments. This has gone on for all of Alex's 13 years. I think we are down to three a week now. We have seen tons of progress, it is scary to think what Alex would be missing had he not received all that early intervention. The thing I learned today, though, is that I have been overlooking his best therapist. She's definitely been the most consistent and I have never had to fight an insurance company for her services.

Today the kids came home from school acting like it was Christmas morning! I don't know what had gotten into them! Of course today was the day for the speech therapist to come, I could not get Alex settled down for anything, so I finally gave up. I just turned on the tv and left the room.

From the kitchen, I could hear twin sis, "Alex, take deep breaths." Pretty soon it was, "you'd better go to the bathroom before she gets here." I am not sure what her motivation was, she had been as ornery as him, but it worked! Hmmm...

Later, we were picnicking in the family room. Dad was gone, so we could do that! We were watching the baseball game and just chatting. I don't even remember what it was, but Alex was excited and trying to tell us something. Twin sis reminded him to slow down and start over so we could understand him. That's when it hit me... Unbelievable... Do you know how many speech therapists we have seen that say the same thing!

All the worries and stresses over having twins. The messes, the expenses, the chaos... now, I get it! Alex has always had a built in therapist! A dang good one, too!

I always said that God gave us twins because he knew we could handle it. I know he's laughed his butt off along the way. We've definitely blindsided him with some of the choices we've made. But even He needs a good laugh! I feel honored to have provided Him with some chuckles, and very thankful that he has given me the opportunity to do so.

We panicked at the thought of twins, we were terrified of Fragile X Syndrome, we were not prepared for this adventure, but look at the irony!! He knew what he was doing. Thank goodness someone did!

Thank God for our built in therapist!

Saturday, October 17, 2009

All He Needs is an Audience !!

Wow! What an ending to an otherwise dreary day, we spent a very cold day day watching our daughter lose two of three games in a softball tournament-tomorrow will be better, then we ran off to see Alex perform in his annual "Horse Show".

Alex has been involved in horseback riding since he was 18 months old. One of his doctors actually wanted him to start riding several months earlier. I was pretty adamant about not putting my baby on one of those big animals! Obviously, I hadn't spent much time around horses. I still haven't, that's what the trainer is for! She is utterly amazed at how little I know about horses after spending at least one afternoon a week at this particular center for the past 10 or 11 years. I guess I just figure that Alex knows enough for the both of us!! Yeah, that's it!

The thing about this horse show is that you just never quite know how Alex will react to all the goings on. Remember the bowling tournament. (*See "What's for Lunch" post.) Generally, he does not like people in his personal space, and he has no qualms about showing you or telling you so. He does not like noise, either, he's got hypersensitive hearing. Then you add the fact that it is a large group of people that he doesn't know. Great, strangers! Another of his favorite things!
This is not really the best of scenarios for Alex! But he loves the horses, so we give it a try every year.

The center where Alex rides has an annual fundraiser event and fall festival.( During the festival, the riders put on a show of their riding skills. The riders have a wide range of skills and various degrees of special needs, as a result, you never exactly know what to expect. But it is always a very nice event, even if Alex struggles!

This time, Alex had managed to manipulate some friends into going to watch him ride. So we got there and all headed into the barn. Now, we have friends there to watch Alex ride and we don't really know what he's going to do! I hate being stuck in those positions, what if he doesn't cooperate? The barn was not just a convenient spot for them to pop in. They had come a long way to see this! Oh brother......

Well... I guess we were reminded that expectations, just like anxieties, are often just a waste of time!

The trainer wanted Alex to enter to loud triumphant music while she introduced him on the loud speaker. Great, I am thinking where can I hide? Too late, doors open, loud music and in comes Alex. Hmmm... I am not sure, but I think he was giving the crowd the King's royal wave. Oh my gosh, he was. The trainer continued with her introduction of Alex, but from above this giant horse known as Lambada, in a loud, very clear voice comes, "Applause, people!" I guess he's feeling pretty comfortable. Alex rode around the arena one full time, talking to the audience the whole time! Now, I really want to hide!! The second time around, the trainer had Alex and his horse perform a stunt. They did it very well, so Alex patted his horse, told him he was a good boy, and then... you guessed it! Turned to the audience, said, "Lambada was a good boy, give him a round of applause!" And so, we did!

Amazingly enough, it gets even better. On the third time around the arena, Alex and Lambada trotted, the fourth time they did a different trot. This fourth trot was the killer! Half way around the arena, Lambada, for some reason I don't know, took a sharp turn and broke into a full run with my baby on board!! Dad turned white as a sheet, I didn't have time to think, and Alex, he got the horse stopped and under control about halfway across the arena. Completely undaunted, and totally in control, Alex guided Lambada over to get their medal and then rode off out of the arena.

I couldn't, and still can't, believe the things I saw tonight! Is it possible that Alex loves all of those things we were sure he hated? He loves crowds full of strangers, loud noises and unexpected things, just as long as he is at the center of them all! I still can't believe the way he got that horse under control in a split second...a split second that paralyzed me! A split second that required a lot of planning and decision making on his part. Unbelievable!

I think I have found the secret, though! Think of all Alex can do!! All he needs is an audience!!!

Friday, October 16, 2009

It Sure Would Be Nice If People Just Did the Right Thing

Today's commentary, for lack of a better word, is going to be short and sweet. Ooohhh so sweet!!!

I have hounded and hounded Alex's school to find a way to include him in extra curricular activities. I know almost every family of a child with special needs has done the same. What I don't know is why we are always met with such resistance!! I am certain that I have never asked for the moon, or the starting quarterback position!

It's funny, too, whenever I send a nice newspaper article on a school that has a special needs student on its basketball team, football team, cheer squad or whatever, I get this great email back about how we have a cheerleader who has Down's Syndrome on the squad. And trust me, I have begun to send them every article I see!!! I had everyone I know send them "way to go's!" when the article on our cheerleader came out!

Now, don't get me wrong! I think this is absolutely fabulous! BUT, I know this family, and they had to fight tooth and nail to get this done. They broke the barrier and we are all thankful for that! But seriously, the middle school (7th and 8th grades) has over 900 students, who knows how many are at the high school. To think, my kids' school district thinks this is a success, one special needs cheerleader. Boy are they wrong, SHE and her family are the success!

If students, faculty and administrations could see things the way the young ladies in the following article do, then there is hope for parents everywhere! Take a look! And keep fighting!

The Pleasant Valley Varsity Cheerleaders & The Spartan Sparkles: Persons of the Week - ABC News

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Thursday, October 15, 2009

Funny how support finds you!

As with many families who are first diagnosed with a special circumstance, we were given tons of pamphlets, websites and support groups on Fragile X Syndrome. And, just like most parents, we read it all, then sat, overwhelmed for days. Alex was just an infant. I think it's actually possible that we had been given too much information! And a support group? For what? We didn't even know yet! We had no idea....

Ironically enough, we ended up in a support group, the most amazing one ever! It doesn't have a name, isn't an official group, and these poor people didn't even see it coming! I think that's what made it the perfect group!

You see, when Alex was first diagnosed at about 16 months old, I had a next door neighbor who was also a stay at home mom. We did everything together, we talked on the phone all day, cooked together, kids outings, everything! She was with me the day the State of Missouri recognized Alex as developmentally delayed enough to provide him with therapeutic services. That notice came in an envelope from the Missouri Department of ... something, something and Mental Retardation. Talk about a kick in the head! I think she actually had to open the envelope for me that day.

Thus the beginning of my support group!! She tried to escape our support system, only to find herself more deeply embedded. She went back to school to become a special education teacher and now has a masters degree in autism education. Escape, no way! We don't talk that often anymore, but she and I both know, come IEP day in the spring, we'll chat. And there is a school district out there with one heck of a special ed teacher because she started teaching those kids after helping a family through a pretty unique experience. Few special ed teachers can see things through the family's eyes. Very lucky district!!!

But that's not all of my support group! When Alex was in kindergarten, a couple of lovely little girls seemed to take him under their wings. They protected him in class, they helped him whenever he needed it. They made sure he had someone to play with on the playground or sit with at the lunch table. His teachers loved it! His teachers started referring to him as a ladies man! Well ... at least he had some friends.

I always made it a point to find these parents and tell them how great their kids were to Alex. I know that is generally the exception, not the rule. I tell you, though, I never quite understood why the parents always seemed so surprised. Well, over the years I have learned.

It didn't take long for these young ladies to teach their parents all about Alex. They loved his sense of humor! What I started finding out is that these girls had an amazing grasp on his differences too! They knew how to both overlook and embrace his shortcomings and help him make the most of himself. Unbelievable! They were in early grade school at the time. If only some of his teachers could see things the way these kids did!

Even more unbelievable to me, is that these young ladies trained (sorry it's the only word that I can think of) their parents to see Alex through their eyes. He was no longer the little boy who had to have the classroom aid because he couldn't participate appropriately, or behave or produce grade level work. He was just Alex.

The parents of these little girls, are now some of my best friends! Who knew we could use our kids to make friends? If I need someone to watch him for awhile or if I have a problem with Alex, or a problem with my husband, or just want a drink, I call the mom's of those little girls who started taking care of Alex eight years ago...

And there are more, many more! Neighbors, friends from high school, other parents of special needs kids, these people found us. All because they know Alex, just Alex!

Am I lucky or what??????

Wednesday, October 14, 2009

Carpools are the best!

As with many families, we carpool to school with some family friends. I tell you, kids are an amazing source of information! You can get the scoop on who's "dating" who, which kids got into trouble, more information on the teachers than you really want to know, but sometimes, you can get the really good stuff.

In the last few days, I've learned that Alex is actually participating in his P.E. class. For parents of special needs kids, two of our worst nightmares regarding school are how our kids will handle P.E. class and the cafeteria at lunch time. Generally our children are not athletic, which provides the other children ample opportunity to ridicule and emotionally torture kids like Alex. At least, this is the thought that we just can't ever get out of our heads.

Well after 8 years of these horrible fears and nightmares, of all things, my van full of kids finally put these fears to rest. You see, it just so happens that one of these kids in the back seat of my car is in the same P.E. class as Alex.

Often on the rides home, he would tell me that Alex scored a touchdown or that Alex made a basket. It's not that I dismissed his comments, it's just that his mother is a close friend, and I figured he had sort of been unintentionally trained to tell me the good, the positive attributes of Alex. Of course I always want to hear that, but sometimes, that just doesn't squash those fears that we all have planted in the back of our minds. But yesterday was different.

I don't even remember what sport it was this time. I think flag football. But the description was different this day, much more animated. "The other kids couldn't even catch him. He ducked and missed this one kid! He went the whole way! He flew past a whole bunch of kids that were trying to get him!" Mmmmmm...... This is kind of cool, I thought, "and you know what, he is really pretty good at everything." I'm not sure, but I think I sort of puffed out my chest, more like a proud dad than proud mom. But I liked it!

The thing is... that's not even the best part! The young kid went on,"You know, I have never, ever heard anyone make fun of Alex or his friend. Everybody just plays with 'em. They're kinda cool!"

I Love the carpool!

Monday, October 12, 2009

What's for lunch?

This past weekend Alex was scheduled to compete in his first Special Olympics sporting event. Initially, we had mixed feelings about this, but it was bowling. How difficult could that be, right? He had practiced with the school team, hadn't hit very many pins during any of the practices, but that isn't really the focus now is it?

He went to the first practice, not really knowing anyone except the coach. He adjusted to that just fine, despite his severe social anxiety. Alex was able to ignore the loud noises and stinky atmosphere, an adult league was going on at the same time as practice. He has exceptionally sensitive hearing and despite all the chaos surrounding his lanes, he was able to socialize and actually make friends. Alex didn't need or even want his mom or dad near him to protect him.

This was fantastic! We had just witnessed a major breakthrough in his life! What a high for us!

But as we all know, a high is just a bleep on the radar before a low. Somehow, we always forget that, though. Needless, to say, we forgot! I think it was one of our desperate attempts to be a normal family. None of my friends' kids have trouble going bowling, it's no big deal. Funny, nothing about us is normal, why do we try to pretend, if even for a minute?

Well, here it is Saturday, time for the tournament. Alex was so proud to put on his team shirt, he'd even worn it to school the day before to show it off! We pull into the parking lot, registered at the desk and headed to his lane. Or... maybe not! There he stood, frozen in fear, tears in his eyes, a look we had never seen before. He could not move. What do we do?

Everything had been going so well. We hadn't prepared for this, not that we could have. Anyhow, we spent the next twenty minutes trying to convince him to cross through the crowd of adult spectators, get to the bowling lanes packed full of kids and their coaches and for what? To show us that he could do it? I realize now, that he could not have possibly heard anything that we were saying.

I looked up and saw tears in his Dad's eyes too. Alright, this is too much for all of us, time to go. I saved my tears for later. What happened? Had we failed? It took all weekend, but finally, I decided, right or wrong, that we hadn't failed. We'd already succeeded by giving Alex the opportunity to try it! I hate that we put him in a position that made him feel so miserable, but fortunately, I am fairly confident that he won't remember that part. Once we left the bowling alley, Alex's only concern was, "What's for lunch?" All was well!

What I didn't know is that there were other people sharing our pain and praying for us that day. Alex's teacher and aide at school weren't able to make it to the bowling alley that day, but they were keeping up on the day's happenings through another person. For the first time since Alex has been in school, these two were going through the same emotions as we were. One told me she teared up when she heard he couldn't do it, the other said a special prayer for us. Any parent who has a special needs child knows how much this means to a parent. These people GET it. They share our hopes and dreams and love for Alex.

When we got to school this morning, they were terribly concerned about Alex's emotional state after the bowling tournament. After I told them the story, they realized, as we had, that everything would be fine. "What's for lunch?" was a dead giveaway! Maybe basketball will be better!

By the way, when Alex asked, "What's for lunch?", it was 8:15AM ! Yes, all will be fine....

Our History

I am starting this blog late in life. I always wanted to write a book, but as with many people, I just never quite got around to it. With that said, I will start my blog 13 years later than I would have liked, but here goes.... By the way, I should warn you, it is intended to be therapeutic as well.

Our family consists of my husband and I, married almost 20 years, our 19 year old daughter and 13 year old boy /girl twins. Our kids are growing up and becoming very independent, just as we always dreamed they would be. So now, it's our turn! Right? This blog is also my answer to the when will you get a job question!

The true reason I am making this attempt at blogging is to share information, hope and laughter to families like mine. You see, when our son was an infant, he was diagnosed with this genetic disorder called Fragile X Syndrome. Let me tell you, we had NO idea what we were in for!

As an infant his development was much slower than his twin sisters. Looking back, Alex was also showing signs of autism. We pushed and pushed the doctors for tests and answers. After months of, "He's a boy and a twin, they just develop slower," we finally had our answer. Of course, we had never heard of Fragile X Syndrome, and based on the information the neurologist gave us, neither had he. And so begins our story...