Tuesday, December 29, 2009
When I last wrote, I wrote about the stresses we go through trying to find the "perfect" gifts for our kids, especially how difficult it was to find those for Alex. During the last few days I realized that all this time, what I thought was the cause of my stress, wasn't really the cause after all.
This gift that I so desperately seek year after year for Alex has so much meaning to both Alex's Dad and me. The look the kids, all three of them, get in their eyes when they open their presents, gives us the most amazing feeling. We don't get that feeling, or at least at that same level, very often. It is a truly special time for us.
For Alex though, it is different. Don't get me wrong, he does get that twinkle and smile, just like the girls, and it is magnificent! But there is another special type of feeling we have with him at Christmas time. I never really isolated it until this year.
That unique feeling we yearn for doesn't come when he opens his gift, or when his eyes light up. It doesn't come when he gets to tell all his friends at school that he got the popular gift, the same ones they all did. Some times it takes a while, hours, days or weeks. But when we get it, it is good!
This year Alex wanted an Ipod touch, a BB gun, digital camera and a remote control car. All relatively expensive. All items that are questionable as to whether or not he can operate them independently or even with help. All items that are somewhat delicate, or dangerous, and could easily break if, say, Alex were not able to make them work the way he wanted them to at that particular time and, say, throw it across a room. It has happened!
Somehow, and trust me I don't know how, Santa and some other elves, decided the kids were very good this year. Alex got all four items listed above, and many more! The kids eyes, Alex's included were popping out of their heads! You couldn't see the rest of their faces their smiles were so big. It was awesome!
Over the last few days, Alex's Dad and I have been given that gift of the most amazing special unique feeling! You see, it is very hard to explain, and many of you might not get it, but here is my best attempt at putting it into words. Examples are probably the best way to help you to understand.
I'll start with the Ipod touch. It's fair to say that almost every 13 year old knows what that is, and the majority of them can operate one easily. But, Alex's abilities aren't the same as those other 13 year olds. He knows all the other 13 year olds have or want one, so he wants one too! Even though we aren't sure he'll be able to even use it, or take care of it. Hmm... do you see our dilemma?
Or the digital camera... Big Sis has a nice digital camera. One evening she went to get her camera to take photos for some event, only to find 17 lovely stills of her flower vase and a wall poster on her camera. Big Sis does not like people messing with her stuff! The funniest and best pictures were the giveaway, the face shots of her little brother, he'd held out his arms and turned the camera on himself. Poor kid can't get away with anything!! So, the kid has obviously got some interest, and talent, too. But, he is 13 and the inexpensive kiddie cam just won't do. So ... we know he can half way work the decent camera, but again expensive and what if he doesn't like the pic and the camera suddenly takes flight? OK ? You have to see our shopping dilemma now, right?
Now, for my breakthrough! After 13 years of this "dilemma", which really is small potatoes in the grand scheme of things, I have seen the light!
The light is that unique special feeling that we get when Alex uses the Ipod touch or the digital camera just like every other 13 year old does. It's not a warm fuzzy feeling, that is way too overused to explain the significance of these moments! These moments are HUGE! These are warm fuzzies to the tips of your toes!
These are the moments we have hoped for and dreamed of for Alex since the day we received our diagnosis of Fragile X Syndrome. The stress I always felt while shopping, had nothing to do with shopping, it wasn't even stress. It was fear! Fear that Alex might not use that Ipod touch, or BBgun or whatever like the other kids his age did.
Dang it.... all these years, I thought I'd conquered all my fears years ago! And, I hate it when I am wrong!
I am not going to lie, we were very fearful, scared out of our wits actually, when Alex was first diagnosed. We thought we had faced and conquered our fears. Ironically, it was not until this Christmas that I was given the gift of realization. I hadn't completely conquered my fears, just chosen to misinterpret them and selectively let them out in different forms.
So now, as a New Year's Resolution, I refuse to let those fears into my head at Christmas time, or any other time for that matter. Alex is Alex, Big Sis is Big Sis, Twin Sis is Twin Sis, Alex's Dad is Alex's Dad and I am very lucky to have them all! I don't have room for any fear, nor should I be afraid of anything. I would not have been given these Gifts if Some One didn't think I could handle them!
My job, is to figure out how to handle them! And thank goodness Some One has a sense of humor! My other job, only because I choose to make it mine, is to make Some One laugh a lot!
Happy New Year, everyone! And try to laugh, maybe even just a little, at your fears this year!!
Thursday, December 24, 2009
I think I figured out what was going on, though. Or at least I found my excuse! This Christmas shopping thing is a killer for me.
First of all, I hate shopping, grocery stores, fancy boutiques, Walmart... you name it! I don't like being there. I don't like spending the money, I don't like taking the time looking for things I need and I hate trying things on. In my world, it should be waiting for me at the door, all a great fit, nothing left but me to write the check. But at Christmas time, it must be done!
I love giving the perfect gift! I just hate shopping for the perfect gift!
And there is my excuse for being unable to write! I have not been able to find that perfect gift for Alex! Well, not just Alex, but the girls either. They did have many more ideas and were much easier to shop for.
Alex, on the other hand, oh brother! What to get? I have racked my brain until it turned to mush. I hate to buy gifts that require too much adult supervision. I want him to be able to use it or play with it independently, as soon as he opens it!
The other issue we face is that Alex is old enough to know what the other 13 year olds get for Christmas and that is what he wants! Never mind that sometimes he doesn't quite have the abilities to use the gift to its full potential, or that we know he will accidentally break it as soon as he tries to use it for the first time!
You know what, though? NO matter how much I hate shopping, or how much more it costs to buy the toy that looks just like the one the other kids have, it is so worth it to see the look on Alex's face Christmas morning when he opens that package!
Hmmm.... Looky there, I did have a little something to say! MERRY CHRISTMAS EVERYONE !!
Saturday, December 19, 2009
Tuesday afternoon, one of my best friends (remember the support group, from here on known as Rock 1 and Rock 2, and so on, and in random order of course!) happened to be at the school and saw Twin Sis sitting out side of Mr. Asst. Principal's office. Twin Sis was visibly upset, so Rock 1 went to check on her. You see, Twin Sis doesn't get upset, so, it is a good thing Rock 1 just happened to be there!
It turns out that there was a little confrontation at school. Twin Sis wasn't involved, but very upset about it. Apparently, and this was confirmed by a number of very reliable 8th graders, lol. A young man made a derogatory comment about "the retard" to a small group of other kids. One of the other people in the group asked what he was talking about and he replied, "you know, Alex, in our PE class." He then went on to mimic and make fun of Alex. Alex wasn't around at the time.
I have always known this was happening. I have always known it would get worse as Alex got older. I have always known it would feel like a knife through my heart when I finally heard the details about it happening. I have always known that I wouldn't be able to stop it. But I never expected, thought about or knew what would happen next.
After the young man finished his routine, according to my sources, NO ONE laughed. A young lady, Rock Baby (daughter of Rock 2), stepped forward and told this boy how inappropriate his behavior was. She told him he didn't know anything about Alex and that Alex was a cool kid. Soon, the rest of the group was tell the poor young man the same thing. Talk about a piece of the Rock!!!! I don't feel sorry for myself anymore! I can only imagine the earful this kid got!
The part I didn't really think about was Twin Sis' reaction. We used to think about it all the time. We knew life with a special needs brother would be embarrassing and difficult for both girls. We knew they would both make sacrifices their whole lives. Don't get me wrong, there have been some bumps along the way for the both of them, but they have always managed to cope and make the best of things. They do love their brother, and they are his number one fans!
Twin Sis has been in the same grade and school with Alex all along. She has come to his defense on more than one occasion. That's why I was surprised by her reaction this time. Especially since she wasn't even involved. She heard about it through the eighth grade chat line. Thank you Rock 1 for calming her. She was a little ticked off at the kid when she got home, but recovered nicely.
For the record, I suspect the young man was just trying to fit in. I don't think he meant anything malicious. He probably didn't even know what he was saying. I do hope he learned how hurtful words can be. I also hope that the kids he was with at the time don't hold this one episode against him, I hope they will give him another chance to fit in himself.
Anyhow, Rock 1 took care of Twin Sis. Rock Baby took care of Alex's reputation and taught the lesson of the day. Mr. Asst. Principal took care of the young man who needs to know words can hurt, even people he didn't directly say them to.
I am taking care of Alex's Mom. To do so, I am enlisting all of the people mentioned above plus all the Rock Babies and putting the heat on Mr. Asst. Principal :) to start a club at this school. If not this school, then this community! This club, I hope, will be a take on the public service mission of spreading the message to END THE R WORD. I hope all of you will do the same. To get started, check out the following link, and then send it to everyone you know. Trust me, the R Word hurts! http://www.r-word.org/
Friday, December 11, 2009
Since I started this writing endeavor, I have been asked many times to explain Fragile X Syndrome. I have to confess, I don't really want to and I am not really sure I can. It's a pretty complicated and ugly mess! In our family, it's sort of a two parter, the FXS facts, and the Life of the FXS diagnosis... Two related yet unrelated things...
I confess, the life of the diagnosis is easier write about, but harder to live with. The medical research on Fragile X Syndrome is changing so fast, I can hardly keep up with it. Because of those two things, I will spend more time on what led to our diagnosis than the medical aspects. I'll send you to the right place for accurate info on that! However, here goes my attempt at providing some real insight into the world of Fragile X Syndrome! Remember now, Alex is 13 years old. He was diagnosed when he was about 16 months old. That's a long time ago in the medical world, and even longer in the world of 40 something Alex's mom! And lastly, feel free to laugh, we did! ... and still have to sometimes!
Here's the FXS basics. Fragile X Syndrome is the most common cause of inherited mental impairment. My family refers to it as "autism with attitude"! It can affect people in a number of ways. Some very general basic systoms of FXS are autistic like characteristics, mild mental impairment or severe mental retardation. It can cause seizures in those affected, tremors in older male carriers and even infertility and premature menopause in women. It pretty well covers all the bases as far as symptoms go. It is caused by a defect on a particular gene, the FMR1 gene, on the X chromosome. The only way to diagnosis it is through a DNA test.
I am by no means an expert on the subject. A long time ago I sort of committed myself to the "need to know basis only" crowd. I don't know if it was the right way, but we've got a good doctor, and I do research as I need to, so it works for me. Sometimes, I think there is such a thing as knowing too much! Anyhow, it is for that reason, I give you this link, http://www.fragilex.org/html/home.shtml . This is the encyclopedia for people affected by Fragile X Sydrome, and through this website, you will find the FXS Gods!
Anyhow, this is how we began our journey............
When Alex was diagnosed, FXS was relatively unknown, so there was very little research and information available compared to what is out there today. That is also why I am hesitant to write about it, what we were told, and thought we knew back then, has already changed.
I am a carrier of Fragile X Syndrome, we don't know yet if I passed it on to Twin Sis and Big Sis, but we do know I gave it to Alex. Through all the genetic testing, we found out that my mom is also a carrier, my sis is too, but it missed my brother. A female carrier has a 50-50 chance of passing it on to each of her children. We had never seen any signs of FXS in my family until Alex. Not even in Big Sis, who was six years old when Alex was born.
If hindsight were 20/20, Alex would have been diagnosed even earlier, but he wasn't . . . but, so what, right? ? When Alex was very young , he was always behind Twin Sis in motor development and cognitive development, we just didn't really know it. Twins and boys develop slower, and doctors are quick to tell you so.
For instance, Alex used to projectile vomit. I know a lot of infants do it, and with twins, there was just baby puke everywhere, but Alex could launch it halfway across the room. Every time! Now again, a lot of kids do it, but in our BIG picture, and hindsight, this should have been a sign.
We also have videos of Twin Sis and Alex doing what we called the "Racing Horses." Alex and Twin Sis would get side by side, up on their hands and knees, they would rock from front to back as fast as they could. At the time, we would all laugh, they really did look like horses ready to break out of the starting gate! Now, again, hindsight... another sign! Both of these are pretty significant signs of sensory concerns that we probably should have caught on to. You know, we still laugh at the videos, what else can we do? We are now conniseurs on sensory integration techniques and theories.
Twin Sis started motoring around much earlier than Alex, too. This really put Alex at a disadvantage. Twin Sis has never been mean to Alex, but back then, what she wanted...she got!She and Big Sis have sort of taken to looking out for Alex now, but back then, it leaned more towards taking advantage of Alex. That's what sisters are for, though, I know.
Twin Sis also started grunting, cooing, uttering, talking, all of those things, well before Alex. This made things a bit difficult for everyone at times. I also think we overcompensated quite often for Alex's lack of abilities. Hindsight, again... that probably didn't really help him much. But it did make things easier for us at the time! We had twins, the easy way had to be considered!
We did ask the doctor a few times about these delays. We never really pushed too much, though. He was right, boys do develop slower. Alex was a twin, and they do generally develop slower, too.
I'll never forget the day we decided it was time to PUSH the doctors. I told you about some of the obvious concerns, but we also had this issue that wasn't really a developmental concern, we just didn't know what it was. I know now why it happened, but back then, we hadn't a clue! And I am still not sure why, but we kept it a secret.
For some reason, Alex would just reach out and smack me! It would happen at random moments throughout our day, lunchtime, nap time, story time... there was no rhyme or reason to it. No one else, except Twin Sis, ever saw it. At the time, it was just the strangest thing...He never smacked at anyone, not Twin Sis, not Big Sis, not Dad, just me... it was so quick I couldn't get out of the way.
A behavior therapist later helped me understand that since Alex couldn't communicate and couldn't completely express emotions, this was his way of doing so. She also explained that he couldn't process his feelings at the appropriate times, either. Sometimes he'd show his frustration late in the afternoon over something that happened at breakfast, but remember, he couldn't communicate this, so I'd get, what seemed to me, random whackings.
The therapist explained how difficult it was for Alex to emotionally bond with people. I was the one person he felt he could he could express himself to, so I was the one getting whacked. I have always felt honored, but on one particular day, I was honored a bit too much! It was the next day that we roared into the doctors office and kept roaring! Dang hindsight! I should have seen these emotional issues and communication issues, even through that swollen eye!
Fortunately our fantastic pediatrician saw us right away, then got us in to a developmental pediatrician(DP) promptly. The DP saw up pretty quick, too. She ran a few tests. I have to tell you, I didn't much care for her.
Her answers were that Alex must have suffered a traumatic head injury. I was a stay at home mom. I had twins, TWINS, I didn't have time to let one of them hit their head! And if they had, I definitely would have known about it! When I finally got her off that one, DP's next explanation was that it was a traumatic birth. I had my twins on their due date, and, ummmm....I was there! Alex weighed 8lbs4oz, c-section, an audience of 27, trust me! NO TRAUMA!!! The only trauma was that doctor's visit!
Oh, I forgot to tell you that DP also told us that Alex's face and ears were misshaped. Really? Thanks so much! ... That really ticked me off! Alex's face and ears were shaped just like his dad's, grandpa's, uncle's... you can't tell which kid belongs to who in that family if you just looked at pictures. OK, DP, move it along!!!! (For the record, the shape of Alex face and ears is a symptom of FX, but I stand by the fact that it is genetics from his Dad's side of the family!)
She did acknowledge that Alex's development was behind so she finally sent us to a neurologist. Basically, he gave us the same routine as DP, we presented same responses, "You are wrong!" OK then, let's just take blood and do a DNA test. Well, I guess that's more than we've got so far, right?
We finally got called into the neurologist office to get the results. Another one of those moments we'll never forget! "Alex has tested positive for Fragile X Syndrome." Dad and I asked what that was and what it meant. To this day, I can't believe what that doctor said. "Don't worry. It's not anything serious. I'll schedule you an appointment with a geneticist." I guess that's code for I don't know what Fragile X Syndrome is, or maybe I don't care. Either way, can you tell I still hold a grudge????????
Dad and I went home and got on line. Let's see, 1997, probably the first time we ever googled anything! The first line of information on Fragile X Syndrome said it was the most common inherited cause of mental retardation. Ummm.... "nothing serious"... the appointment with the geneticist was months away. What are we going to do?
Fortunately, our regular pediatrician took our call immediately. He went straight to the University Medical Center's Library and called us right away. He also had the geneticist call us right away. We saw the geneticist(DocM) within the next few days, and have been seeing her regularly ever since. Another of our favorite places http://thompsoncenter.missouri.edu/
At the time, things seemed a whirlwind. DocM had us set up with therapists that I didn't know existed. A caseworker from the State had to do an evaluation on Alex. I remember it was very long and terribly depressing. It seemed like Alex couldn't do anything. I remember crying. The caseworker, told me something that to this day is so relevant, for every child! "I know this seems bad. I know it looks to you like he isn't accomplishing anything. But remember, if he scores low, he will get more one on one attention. One on one attention is good, no matter how we get him there!" Hmm... she's right, good for all kids!
Well, needless to say, all that therapy has paid off. Alex is not the perfect thirteen year old. to the rest of the world, Thank Goodness! But what in the world would we do with a "perfect" kid. Somehow, though, he turned out to be the perfect thirteen year old kid for us! The cherry on top, is that he has made stride that were never truly expected of him either! Again, . . HOW LUCKY ARE WE ????
We had to qualify for these services through the MO Department of something, something... Developmental Disability and Mental Retardation. We qualified and I got notified in the mail. That was the ugliest envelope I have ever seen! I had to call my neighbor to come open it. Thank God she did. She opened it that day, and has been stuck with me ever since.
Not too long after the arrival of that envelope, we had people coming and going from our house all the time. There was the usual therapists, speech, occupational, physical... we also had behavioral therapists, special ed teachers, sensory integration specialists. Some of them came twice a week, some of them we'd visit at the office. Most of the time I didn't know who was coming or who we were seeing, I just knew where we were supposed to be and when. At least I had that part straight! And that is a huge accomplishment for me!!!
I had no idea at the time, that that was just the beginning. The therapists still come, just not as many. Those ugly envelopes still come, just from different places. The evaluations are still there. We still cry. We still have to argue with "experts". There are still days when something happens and we wonder if something he did as an infant or even yesterday should have been a sign...
But... Hindsight, Schmindsight.... we had no idea then and probably wouldn't now if it happened again! As a matter of fact, I know that as soon as we cleaned up the disgusting puke, we'd probably measure it for distance! And as the kids started revving up in the gates, we'd still be giving the play by play for the race and laughing all the way! We still laugh at things we probably shouldn't, we still cry at things we can't control. What matters is we're doing what we can now! And... if we're doing it wrong, we'll do it right tomorrow! Sometimes, we laugh at how bad we screwed up, and start all over. Oh well... It's definitely keeping us occupied!
I have always said that God chose us to be Alex's parents and family. He knew we were the best choice and could take care of Alex. I am pretty sure though, that we surprised Him along the way with some of our choices. I know that on more than one occasion, He said to Himself, "Wow, I didn't see that one coming!", or "What the heck were they thinking?" But I am also 100 percent certain that we have provided Him with an awful lot of laughter along the way. What an honor! I know He laughs for awhile, then gives us the strength to get over that next hurdle.
TO BE CONTINUED - Now, that is a funny line !
Friday, December 4, 2009
A quick update...The Christmas tree has now stayed up for four days in a row. With the help of rope and a hook in the wall, of course! So we will decorate it this weekend, if the kids will get close enough to it!
Yesterday, we had the most amazing day! I was lucky enough to join Alex's special education class on a field trip. Today I can use the term lucky. For the week and a half since the teacher asked me to go, I wasn't feeling lucky, I was dreading it terribly!
The field trip was to the metro's holiday hot spot and was destined to be crowded with busloads of kids, adults out Christmas shopping and all the corporate people out lunching and meeting. The teacher "invited" me to go because of the difficulties Alex has been having recently, which happens to be the same reason I didn't want to go! But, I needed to be there to be available to bail him out if necessary.
The reason I didn't want to go with the class, though, is so selfish. I knew that there was a very good chance that Alex would be terribly stressed. I was very afraid that his social anxiety would get the best of him and that he would have some sort of inappropriate reaction in public. I haven't completely figured out how to handle those scenes. Don't get me wrong, we don't expect him to fail, and he doesn't very often, it's just that when he does...well, I guess we don't like it.
Here's an example of one of those scenes. The waitress comes up from behind Alex, and he didn't see her coming, so he throws his glass across the table. The entire restaurant turns and stares. Dad, Big Sis, Twin Sis and I immediately go into our routine of cleaning and calming Alex. All the while Dad and I know that every person in the restaurant has made a judgement on what just happened. Dad and I are horrible parents, Alex is a terribly misbehaved and spoiled teenager! While they never show it and will never say it, I know, Big Sis and Twin Sis are embarrassed beyond belief! Alex feels guilty, ashamed and frustrated. It doesn't happen often, but when it does, it is horrible. We do go to restaurants, we just try to avoid putting Alex in these types of situations and avoid the massive crowds. Of course the field trip was to chaos central!
I try to live by the theory that the uninformed's judgments don't matter. But when they are about you and your children, they hurt! And unfortunately, end up mattering! That's why I didn't want to go on the field trip. What a cop out, right?
Well, I went on the field trip. I think there was a group of about eight students, Mrs. Teacher, two Mrs. Paras and myself. Sure enough, once we got there, buses and buses, crowds and crowds, and Alex, nervous as can be. I am very happy and proud to say that he handled it all, including lunch at the restaurant, beautifully! He did, however, continuously chose to be with Mrs. Teacher instead of me! Haha! I am OK with that.
I did witness some pretty amazing things on that trip. Things I have never even thought about or considered. I have already told you how fabulous Mrs. Teacher and Mrs. Paras are, but I have never seen these students interacting with each other. At first, I was pretty aware of the public's reaction to our group. After thirteen years, stares still make me angry! My skin is thickening, though! However, it did not take long for me to forget the public! This is cheesy but let me tell you, talk about WARM FUZZIES!
Everyone of these kids knew the needs of every one of the other kids. They could "read" when one was about to get anxious and would instinctively calm the child before his stress escalated to an unmanageable level. If one started to stray or got too far out of reach, one would reach out to him and guide him back to the group.
At lunch one of the students recommended to the teacher a nice meal for his buddy who wasn't verbalizing his wishes at the time. He told her something like, I know you are in charge and are responsible for ordering for my buddy, but I know he likes Sprite and chicken nuggets, so this is just my suggestion.
One always made sure he held the door for everyone. Go ahead Mrs. Alex's mom, I've got it. Most grown men don't do that anymore!
For awhile, the class split into two groups. One of the students with Mrs. Teacher and I, became very nervous when he realized Mrs. Paras weren't there. The students in our group took care of him and calmed him. Even Alex got into the picture, rubbing his back and holding the student's arm. They knew he liked to have an arm draped over his shoulder, so the students draped their arms to calm him until Mrs. Paras returned.
It was one of the most beautiful sights I have seen in a long while. And what a concept, these kids were taking care of each other! I think the rest of us could learn a thing or two!
Sunday, November 29, 2009
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
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
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
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
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
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
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
"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!
Wednesday, October 28, 2009
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
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
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.(http://startimeriders.org/) 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
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
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
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
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 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...