Tuesday, December 29, 2009

Facing Fears - And Finding Them, Too !

Well, Christmas is over. It was fabulous! Alex's out of town G'parents were here, which made it extra special! We only get to see them once or twice a year, so it was great to have them here over the holidays!

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

Merry Christmas ! Shopping, too!!

This has been a very unusual few days for me. On more than one occasion, I have sat down at my laptop only to realize that I have nothing to say. I ALWAYS have something to say! It left me wondering if I was getting sick!

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

Making A Difference One At A Time ... I Have Proof! ( Way to Go Rock Baby! )

I haven't been able to write much these past two weeks. I took a temp job for some Christmas money, and thank goodness it is over! I left every morning just before my kids, and got home just before bedtime. It was awful. I hated not seeing them! Fortunately though, I have eyes and ears and very (excuse the grammar) AWESOME teachers and staff that kept me posted on things that were going on . . . and with me gone and Dad extra busy at work, you knew something was going to happen. This one caught me off guard, though!

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.

And finally....

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

FX Diagnosis... A Life Changing Experience... Compared to What???

(Sorry, this is a long one! )

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

What an Invitation After All !!!!!

What a busy week around Alex's house! Too much to write about! But all in all, a GREAT week! Kept us all running and we are pooped. Can't wait for the weekend and some rest.

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!