1 Special Family

Down But Not Out

2011-02-08T23:49:00.000-06:00

I am worn out. For the first time ever, I actually feel defeated. I am a royal pain in the butt, I never let anyone or anything beat me. But now, I am done. I am tired, just plain tired. That does concern me a bit, I am not really that type of person. Truthfully, I am more of a bitchy, aggressive type. Maybe it's all this snow we've been having. Or the eight snow days my kids have had in less than a month! (I LOVE my kids, but EIGHT snow days in Missouri in less than four weeks does not happen here! MAYBE eight in a winter!) And there was Martin Luther King Day in there, too, just to bond some more!

My day started with the insurance company. What could be more fun? Why can't they just pay their part of the bill? Why do I have to call them three times and listen to that lovely woman who provides the voice for their automated voice response system tell me over and over that she can't understand my response? I am from Missouri- the part that doesn't have an accent - and was calling Massachusetts. My response was "ONE!", how can she not understand that? By the fourth time I had to repeat myself, the whole state of Massachusetts understood my response. Give me a break!

Then on to the State of Missouri. Yippee! This got even better than I dreamed. This was supposed to be taken care of before January 1st. But for some reason, Alex's case manager can't get Alex's therapies organized. Alex has had the exact same therapy program since he was three years old. I write it, hand it to the case manager. The last ten case managers signed of on it, turned it in, therapists came, all is well. Why is this one different?

And to top it off, we have school... yes, school. Every one with a special needs child loves school. You remember Mrs. Teacher and Mr. Principal from Middle School? Oh, how we love them! I wrote often about how great they were, and I knew they'd be hard to top, (actually impossible) but jeez. All I want is some one to help Alex learn to read and function as an adult. I know this is shocking to many people, but we don't send Alex to school for daycare. He has potential. Lots of it! Dad and I are doing our part, so is Twin Sis, so are Alex's friends. Why can't the school? Kind of backwards don't you think?

I think my problem is that I don't think I should have to be dealing with any of these things. I pay the insurance company to take care of their part. My claim is not even questionable, just follow the rules (that they wrote) and be done with it! The case manager is just, well, I am not sure what is going on with him, but he best get his act together soon! It's his job to organize Alex's therapies, I have already done the hard part of his job for him, he just needs to turn in the paperwork. And as far as the school, isn't it their job to educate students? Why am I having to fight tooth and nail to get these people to just do their jobs?

I expect my insurance company to pay my claims according to my policy. I expect Alex's caseworker to handle Alex's therapies in a professional and timely manner. I expect a teacher to teach.

What is wrong with me?? Don't these people know I have better things to do with my family? And why is it that they can't do their jobs without my assistance? I'm a little ticked off too, they're getting paid to do these jobs that they're not doing! I could use that money, and I'm the one doing the job! Again, what's wrong with this picture?

I do, however, have this feeling that in a couple of days, I'll be ready to take them all on again! That's who I am, I am just on a little break. I wish my break was on a beach though!

Look out, here I come! .... just not bronzed!

THAT stupid word !!!

2011-01-24T11:26:00.004-06:00

Yesterday I did something I don't normally do to kids I don't know. I embarrassed them. I REALLY embarrassed them! I didn't feel too badly about it either... well, maybe just a little. It's not their fault they are uneducated. So here I am educating... ha!

I was sitting in the waiting area of the community center watching the football game while Twin Sis and her buddies were off playing basketball. I was astounded at the number of people that just dumped their kids off and left. I was also horrified by the number of people who were not paying any attention to their toddlers as they were yapping with their other adult friends. I saw one child that was probably a two year old walk out the front door while his mom was chatting away with some other nitwit... She didn't even notice, it was only fifteen degrees and nine inches of snow outside, no big deal for a two year old... come on people!

As you can tell, I don't have much tolerance for stupidity or lack of common sense. That's why I felt a tinge of guilt for the kids I embarrassed yesterday, they probably had parents like these. They just didn't know better.

Anyhow, I was sitting in this little - very little - common area waiting for Twin Sis and the girls to finish up their big game. For the biggest part of the time, I was in there by myself, which was nice, but soon here came a group of 5 or 6 young teenagers. They were probably junior high school students; old enough to notice the old lady sitting in the middle of the room!

They had obviously been sent to the community center by their parents for the day to get them out of the house. Now, I am certain my kids are not little angels, but I am also positive that if a lady they didn't know was sitting in a tiny little room with them, where she could hear every word they said, my kids and their friends would be fairly selective in not only their topics of discussion, but their language as well. (Score at least one for Mom!!) About those kids whose company I was forced to enjoy at the community center? WOW, could their parents could use a good bar of Ivory!

Something about this lovely encounter was very surprising to me... And it is not often that I surprise myself!! I found that their vulgar sexual comments, and horribly foul language, and terrible talk of school, classmates and parents didn't really offend me. I just sat there, occasionally glancing their way to check their ages, took it all in, and kept thinking "Where did they learn this stuff?" and, even more, "Please, oh please, don't ever let Twin Sis or her friends sound like this!"

I was very angry, though, while listening to their conversation. As I sat there for about forty-five minutes, those kids used the word "retarded" thirteen times. I didn't say anything, I just fumed. They called each other retarded. They called other people who weren't there retarded. They called classes they disliked retarded. One of the kids apparently had a retarded phone. Really???

I sat there and listened. I am oversensitive to the use of the R word. Absolutely! I know I am. I am supposed to be though. That's part of my family's world. That's one of the descriptions of my Mom job!

When I left that room, I asked those kids if they would stop using the word retarded. Only one of them looked up at me, so I repeated myself. The girl that looked up didn't know what to do. "Hey you guys, don't say retarded anymore," she told them. Big eyes, not sure what to do. Who could blame her? "Crazy lady talking, come on guys, help me!" None of them did. (She really needs some new friends, I wanted to tell her.) I went on and said that I have a mentally retarded son. Her eyes got bigger. I told them all that I would appreciate it if the next time they thought about using the word retarded, they would think about what the real meaning of the word was, then see if the meaning fit how they were going to use it.

I am not sure if I did any good or not. I believe Big Eyed Girl might think twice next time she calls a cell phone retarded. She was pretty taken aback when I told her I had a mentally retarded son. I hope she gives it some thought, I also hope she tells the next person that says the word retarded to her the story about that crazy lady at the community center. Maybe I made her think. I am not sure about the rest of that group. But, I guess every thing happens with baby steps.

For those of you that haven't, go to the link at the end of this post and take the pledge to end the R-Word. It doesn't take a rocket scientist to realize that a cell phone can't be retarded. It doesn't take a nuclear physicist to realize that if someone calls a cell phone retarded, it means they don't like it.

The word retarded does have a medical definition, but like so many words in the English language, it has changed over time. It has now become an over used adjective with a very negative connotation to it.

While Alex fits the medical definition of retarded, there is nothing about him that fits the newer adjective that so many are using. Everything about my Alex is good! Well, for the purpose of this story anyway. So lets get rid of it! It hurts to hear it!

http://www.r-word.org/

Out Smarted by an X-er

2011-01-15T15:26:00.000-06:00

Don't you hate it when your kids beat you at your psychological "I gotcha games"?

With Alex's anxiety issues, we are sort of limited as to where we can go and what we can do for entertainment, so we spend a lot of time in the car. We travel a lot. We go for nature drives... several hour long nature drives. We enjoy watching wildlife.

With Dad's family so far away, we spend a lot of time in the car driving to see them, too. Anyhow, you get the point.

I've written earlier about my Rocks. Thank God for my Rocks - and I do mean that! I hope every one is as lucky as I am to have people like them in their lives. I know there are times, especially recently that I would not have made it with out them... But some times, those Rocks, some times I'd like to just wring their necks!

At some point one of my Rocks had Alex in the car with her. She is just so sweet...(insert sarcasm) that she taught Alex this really cool travelling game. (more sarcasm!!) Her family calls it Bingo. Whenever you see a yellow car, you shout "Bingo!" Well, on one of our two hour drives to a nature preserve, Alex "Bingo'd" all the way up and back. On the way back, everyone else was trying to sleep! Alex can spot a yellow car four miles ahead of the rest of us. He would shout so loud, it would scare us to death!

You can only imagine the 10 plus hour drive to Colorado. Have you ever played the SAME game for 1o hours? Not even a good college drinking game ever lasted that long?

Now, all parents are smarter than their fourteen year olds, right? Especially their fourteen year old son with Fragile X Syndrome. Sad, but true... You would think! Well, not Alex's Dad and I. This "Bingo" torment lasts for hours, and I am telling you, there are A LOT of yellow cars out there. And Alex gets loud when he's excited! Try to imagine the inside of our car, especially during a loooonnngggg drive across, say Kansas, on our way to Colorado... No one, I mean NO ONE stays awake for that whole drive.... But we all did!.. BOTH WAYS mind you!! Even after dark!

Dad and I are geniuses, we developed a plan. Before we went on our trip, we changed the rules of the road. We thought that if we made the game too difficult, Alex would eventually quit playing. Peace at last....

Here are the new rules.... yellow car is a "Bingo", red car is "Nothing", VW bug is "Slug a Bug"- and you have to name the color, purple car is a "grape", green car is a "lime", orange car is a "mustang" - long story, the car has to be moving also. It's a hard game at 70 miles an hour, right?

Oh my gosh, those rules were made in November! We drove to Colorado with that game going on! Did you know it is possible to see car colors in the dark? Apparently Alex has built in night vision! Is that a Fragile X thing? Or an "I know everyone wants to sleep, and that just ain't happening, thing?"

And ... commercials! We will be sitting in front of the tv, suddenly we hear... you guessed it, "BINGO!" Sometimes Alex even makes sure we count it by qualifying his Bingo with, "It's moving!"

I sort of feel like the loser on that game show.... "I am Alex's mom, and I am not near as smart as I thought I was!"

My New Christmas... I got the Sign

2011-01-11T00:04:00.000-06:00

Christmas was wonderful! We drove to Colorado, it was a beautiful trip. I had forgotten how absolutely unbelievable the mountains were. An airplane flyover or into the Rockies does not do them justice!

We left Christmas Eve morning and as you know, this trip was a sort of ... well, I am not sure if I was running away from Christmas past or toward Christmas future, neither of which were too appealing at the time. But you know how something always happens to let you know that you made the right decision...

We were driving west down I70 and it just kept getting warmer and sunnier, the closer we got to Colorado, the bluer the sky became. We had Christmas carols playing in the car, we kept laughing at how weird the weather was for a Christmas Eve. During our drive, I was getting texts and pictures from my "Rocks" and my brother, going east on I70. Snow and ice storms, with no visibility... what should have been a short three or four hour drive for them was taking forever. They were on pins and needles. We, on the other hand, had beautiful weather, the windows down, and were covering twice the territory they were. Yup, I think we made the right decision... "Here's your sign!" Pike's Peak with snow capped top, bright blue sky and 55 degrees at the bottom... we were going to be ok!

We had rented a small house. It was in the mountains with a view of Pike's Peak. The weather was nicer there than it was here at home, except for the last day we were there. We got to experience a full blown mountain snowfall while snowmobiling to the continental divide. It was fabulous! Alex, Twin Sis, Dad and Mom LOVED it, how often does that happen??? Alex's anxiety issues, were pretty much gone. Even in the whiteout conditions.

We did come around a turn on one of those curvy two lane mountain highways and came to a full stop in traffic. Eventually, as traffic moved on one car at a time, we saw that there was a big horn sheep in the middle of the road. It was at that moment that Dad, who was driving, was bombarded by a size 8 basketball shoe from the back seat. But other than that, the anxiety level was relatively controllable... And really, the sheep was a little close, I could touch the thing out my window. Alex was NOT pleased.

Aside from that roadblock, we were taken a bit by surprise by a few other things. (Remember, I am from Missouri)... Just because a mountain has a cell tower on it does not mean you get cell service, I think, though, that if you are on one side of the mountain, you might get service... however, the road goes around and around and around said mountain, so service goes off and on, off and on... I didn't understand.

Also, some of Colorado's highways are actually one lane dirt roads! I highly recommend taking them, they provide some of the most beautiful scenery ever! BUT, I would take them in something other than a full size conversion van with rear wheel drive. We were on a four lane highway that just stopped and turned into dirt. What to do... what to do... We were feeling adventurous I guess!

We were also computer less... hahaha... new wifi computers won't work with the old dial up things provided at the mountain cabin. It is amazing how dependent we are on that junk.

This trip, though, was probably one of the most amazing ever. I have always believed that family is so important. I have drilled that into my kids' heads like you would not believe that you spend as much time as possible with family, you never know how long you have. My husband's family lives a long distance away. We don't get to spend near as much time with them as we want to. We have always worked very hard to go visit them every extended holiday we have. Now don't get me wrong here, it's not that I want to spend less with them, but something about that week in the mountain cabin with just Alex, Twin Sis, Dad and me was so marvelous.

We saw our kids in an entirely different light - and we also saw some of the same butt heads as always, too. But something about just us and being away from home was so different. I am sure that part of it was having to drive 8.2 miles to receive cell service... but it was a very enlightening experience.

Have I been cheating myself of these times with my kids by spending the time with the extended family? We love and enjoy Dad's extended family. They are fabulous with Alex and Twin Sis, they GET IT! That's important too. We do fun stuff with them too. We make it a "vacation" with them, more than just a visit. We always have so much fun with them.

But who knew I would enjoy my own kids as much as I did?? Alex has an amazing sense of humor! He is as big a smart ass as the rest of us, who knew?? The things he said on that trip! At some point I stole his Dad's chair, so Dad sat on my lap. Alex told him with a completely straight face to "Get his fat ass up!" I am not sure but I think I peed a little that night!

Twin Sis is so loving and compassionate. She knows what he needs before we do. She is adventurous and a bit dingy, very dingy! She is also one funny kid. She managed to fall of the back of the snow mobile and run up the mountain to catch up to me with out me knowing! Another mark for my Mother of the Year Award!

I think maybe I got to know my kids a little bit better. I was able to see them in a completely different situation. I did miss Bis Sis. The fact that she wasn't there didn't dominate my thoughts, I wasn't depressed that she wasn't there. I guess I wish she was...

I did have a completely different Christmas, the first one in forty something years. I was terrified of changing it... But I think it was the best one I've ever had! Everyone was happy. Every laughed, a lot! Everyone was together. I am not positive yet, but pretty sure, that we found our New Christmas tradition. I think we will spend it travelling.

The vacation ended on New Year's Eve with the long Drive home. We got home around 10:00PM. We managed to stay up and celebrate the New Year, and then were to bed by 12:05, pretty much like every other New Year. I think that means we are off to an uneventful 2011, I'll take it!

Happy New Year every one!!

Coming Clean to a Perfect Christmas

2010-12-23T09:15:00.000-06:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

High School Brought Out the Crazy

2010-12-17T20:39:00.000-06:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Special Siblings

2010-03-24T22:50:00.003-05:00

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

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

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

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

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

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

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

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

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

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

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

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

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

Choose Your Words Carefully ~~ Especially the R- Word

2010-03-04T14:12:00.012-06:00

Sorry, folks! Soap box day !

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

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

As a parent of a special needs child with mental disabilities, I am pretty sensitive to the use of the word retard and I am not going to bore you with another story about it. You can read my first one if you'd like. http://1specialfamily.blogspot.com/2009/12/another-one-bites-dust-well-just-one.html

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

If Johnny Knoxville gets it, why doesn't every one else?http://www.youtube.com/watch?v=RfMlrTV_5vY

Alex WON'T Miss His Friends

2010-02-25T09:22:00.000-06:00

Well, it's almost official. I am going to have two kids in high school. Nothing about that sentence sounds good. I know, it's only February, but the enrollment process has begun!

Remember, Alex has Big Sis, so we've done this before. Choosing classes for the ninth grade is a project, a huge project. We have to plan their whole high school curriculum, not just one year. We've got to make sure they get out of there with that diploma! Let me tell you, with Big Sis, enrollment time was a nightmare, drama central! She has very definite likes and dislikes, wanted to stay with the crowd, blah, blah, blah. She did amazingly well. Graduated with a ton of college credits and fabulous grades. It couldn't have ended better! But boy, have I been dreading the day we had to do this for Alex.

We've been in denial for months. Alex's Dad and I dread transitions. We are transitioning to a new school, new system and ... GASP ... new teachers. That's right, Mrs. Teacher and Mr. Asst. Principal aren't going with us. Uggg... high school!

Well, it happened, the kids brought their enrollment packets home last week. Dad and I spent hours with Twin Sis making sure we had all the right core classes and pre-requisites to get her through high school with a diploma and, hopefully, with a few classes she likes. Fortunately, Twin Sis, is pretty easygoing. She is a little bit interested in everything. She wasn't very particular about choosing her classes. Of course, as a freshman, they only get to choose a few. I also think she just wanted to get it done with!

Then Dad and I, each with our own 60 page booklets, spent a couple of hours trying to figure out what would be practical electives for Alex to take. After that, we had to decide which ones he would actually like and cooperate in. It was more difficult than we had expected!

Anyhow, we got the forms done and sent them in. No drama, no tears, everybody happy, relatively smooth ... I should have known!

Alex's schedule got sent back to me with some changes. I wasn't really surprised. I figured it would be redone at a "meeting" later on. I looked closer though and decided I needed an explanation. A phone call was in order. "You see, Alex's Mom, Alex is going to be in special education classes all day next year." Oh, really? "We'll see how the first semester goes and then he can always take art with the general ed students the second semester if he's adjusted well." Oh, really? "That's how we do it at the high school level. We've put a lot of thought into this to make sure these kids get all their credits." OH REALLY?

Really? Because Alex's Dad and I haven't given much thought to his future at all. Ummm...... Seriously, Mr. Teacher, we are not off to a good start! It still amazes me that people really think we haven't thought about what's best for Alex. Don't get me wrong, I am open to suggestions and opinions, but only if they are good ones!

Now, here is mine and Alex's Dad's plan for Alex. We know he requires special education classes for his core classes. In the classes that teach material that Alex needs to know and retain, he needs to be in a small class with a specialized teacher. Alex is also very social, despite his severe anxiety. He just takes awhile to adjust and needs an aide and modifications. He can have this in some of the elective classes. Alex will not really need to know the specific material taught in these classes, he will need to see how the world outside of his special education class works. Alex needs his friends, he needs to make new ones. He's worked hard to make the friends he's got and he has worked even harder to put himself in a position to socialize with others. He has certainly earned the right to try!

This is only our plan for Alex. This isn't a plan for any other kid. This may not even be the plan for Alex in two years. But this is our plan for Alex for now. There are all sorts of arguments out there for total inclusion and least restrictive environment and so forth. The bottom line is ... it's all about what is best for each individual.

I'm sure you have noticed a bit of hostility from me today. It isn't always that way. I have also told you about the good stuff. We've had a lot of that for the last couple of years! The fact of the matter is, as a parent of a special needs child, this struggle is tough. People don't realize that it's an internal battle, too. Every parent has them, what's best for their kids?

But this one, this one about how much time spent in the special education setting versus how much time spent in the general education setting, it's a killer! Alex's Dad and I, we each have these struggles and conflicts, then we have them with each other, then we have to go have them with a room full of a dozen strangers that have never even met Alex, then, we have to convince these people that we are right. Believe it or not, we actually have to convince strangers that we know our child better than they do! How often does a parent have to go through that? After all these years, I still don't understand why we have to...

The kicker, of course, just like every other parent, is that we will spend every day wondering if we made the right decision. The part that really gripes me though, unlike every other parent, I have that room full of a dozen people waiting to tell me I was wrong! Oh well, it's a good thing I always find a way to be right!

And I guess it's been a long time since we've had a good old fashioned IEP meeting. Hmmm... I guess by doing the right thing Mrs. Teacher and Mr. Asst. Principal took those away from us. I hope I am not too rusty!

I am fairly certain that soon, there may be a new way to do things at the high school, Alex's way! ~ and he won't miss his friends and social time!

The Super Bowl Party via Manipulation

2010-02-11T10:01:00.006-06:00

What a couple of weeks! We had a huge snow storm, nine to ten inches in one day! Remember, I live in Missouri so that doesn't happen very often. It was kind of a strange snow, a mile or two in either direction only got a dusting. For us, it meant a fire in the fire place and staying at home! It was actually kind of nice to not have to be anywhere for once! Alex and Twin Sis loved watching the snow, but had absolutely no desire to go outside! - just like their mom, give me a beach!

We also had a flood, courtesy of a malfunctioning washing machine, in the house no less. It did some major damage. But, I guess it is time for some redecorating anyway! I never did like that carpet!!! And... I need a major project now! I keep telling myself that, but I'm still not buying it!

And, of course there was the Super Bowl. For some reason this year, I wasn't too excited about it. We didn't plan a party or plan on going to one. But, guess what... Alex woke up early that morning, got Twin Sis up and cleaned the main parts of the house, well in their own way. Then, the first thing out of Alex's mouth when his Dad and I woke up... "It's Sunday, we're going to have a Super Bowl Party!" Oh brother, so much for a relaxing day at home! Alex doesn't even like football! I don't really know that he understands what the Super Bowl is. Actually, I am pretty sure he doesn't! But, how could we say no?... Luckily, some friends, one of the Rock Families, didn't have plans, so we spent the evening with them.

Again an amazing milestone, I mean inchstone. Alex has learned to manipulate us! Just like all the other teenage kids out there. Yay! OK, its a bit out there, but all the other kids do it, so, it's an inchstone! We do want Alex to be like his peers, don't we? Boy are we in for it!

He doesn't realize it, but he's always going to win. Along with his very masterful manipulation, there is another factor in play, we call it the Guilt Factor. You see, Twin Sis gets to go to slumber parties, she gets to go shopping with her friends, she is texting or chatting on Facebook with someone constantly. Big Sis is the same. She gets to run all over the place with her friends, shopping with her friends and the family. You all know where this is going... Alex doesn't get to do those things... hence, the Guilt Factor! It's not really a bad thing, more like a good excuse to go get ice cream!

Occasionally Alex realizes he's getting left out of a lot of things. Sometimes he gets a bit angry, who wouldn't? That's Alex being a kid, a plain old kid! It usually only lasts a minute or two. Alex's Dad and I try to do something different with just him while the Sisters are off on their special events. No one is leaving him out intentionally. Sometimes people go out of their way to make sure he is included and comfortable, especially those Rock Families! Basically, to this point anyway, it all works out in the wash.

Alex is always a happy kid. Seldom will anyone who knows him see anything different. Seldom also, will anyone ever see the manipulative teenage boy, who got his mother to scrub the toilets so that he could have a Super Bowl Party! The Guilt Factor has been around for years and I haven't scrubbed a toilet for that!

When did this happen? Alex manipulate me? GAME ON, KID!! Oops, Guilt Factor! I think I just became that little hamster stuck in his circle! Dang, I didn't even see it coming!

By the way, Alex didn't watch a lick of the game!

A Path to Understanding

2010-02-01T11:28:00.004-06:00

It's been awhile since I've posted, but a lot has happened. In my little world, at least!

Alex has reached some major milestones, again in our little world! I have been working on a project and had such little success that I think I might pass it on to you! Read on.... I have a rant!

Milestones, milestones, milestones . . . they are every where! They are on posters in every pediatrician's office, every childcare book, basically everywhere a parent looks. To a parent with special needs, though, imagine what those "milestone" posters represent?

All they said to me was, "Look here, another place your child is failing! Only now it's poster sized! - and in color!" Like I didn't feel bad enough that Alex wasn't walking at whatever months old he was supposed to! ( Can you see the good news here? I've already forgotten when he was SUPPOSED to do it!) He walks now, who cares when he started!

First words, puhhlease..... all I know is that it wasn't mama or dada, and it came way late! I do remember though, that when he was four or five, the speech therapist came running out to the carpool lane after school to tell me that Alex had dropped something and said "shit". She was so excited! Apparently that particular word contains a very hard consonant blend to make... and he used it in the appropriate context! Woohoo! Alex's first ten words, and one was a four letter word! with a difficult consonant blend! ...... Milestones

Potty training, that's a good milestone, too. I worked in a Mother's Day Out program for preschoolers for 10 years, special needs or not, there is about a six year window as to when a boy will use the toilet! I decided it's all about their mood, not their ability. And does it matter, as long as they can hit the urinal in junior high, or at the office? Does it really matter when they learned? And sometimes, they just can't!

Here's the thing, too. Say they haven't learned to walk or talk, or hit the urinal in junior high, so what? There are adaptations to assist them. Does that stuff even really matter to us in the big picture? That stuff is small potatoes! These people have much more difficult things to deal with! Small potatoes, I tell you!

Don't get me wrong, it is a daily struggle for people with special needs and their caretakers. It isn't easy, it isn't difficult, it is harder that heck for all involved! Actually, no one knows how hard it is until you have been in their shoes and the shoes of the people who take care of them.

This brings me to Alex's milestones. In our world, they are really inchstones. No one notices them but us. They are every bit as big as a baby's first steps, just very different.

Alex started and maintained a conversation. He spoke six sentences with eye contact and each response was appropriate and grammatically correct. He also did it twice. No biggie to most people, especially when you think of a thirteen year old. But for Alex, this is major! Never mind that he went into great (too much) detail about all the mechanical difficulties, both real and imagined, of our vehicles with his teacher. (Can DFS take kids away for parents driving crappy cars?) He also held a lengthy conversation with his speech therapist, again with eye contact! Yay, for Alex!

Alex also, showed a lot of independence this week. Poor kid got the flu. It is kind of sad for me, but for the first time, he didn't really want me around. He took care of himself. He went to bed when he had a fever, he knew when he needed ibuprofen, knew he needed to keep liquids down. Just very independent all around!

Mrs. Teacher has her class run a weekly coffee shop for the teachers and staff at school. She's done this all year and Alex has worked in it quite often. We think this has been a great opportunity for Alex and his class, but we didn't realize until just recently what exactly Alex's job was. When Dad took Alex to work at the coffee shop most recently, Alex was actually pouring hot coffee into the teacher's cups. Again, no big deal for a thirteen year old. Major inchstone for a kid who is as anxious and nervous as Alex. Mrs. Teacher must be very calming, and the rest of the teachers very unknowing! Another success for Alex!

Now for the tie in.....

The other day at school, during a free time sort of thing, the kids all headed to the commons area! At one table was Alex and his class, his special ed class. The other tables were packed with middle schoolers. Someone at a table made the comment, "I wish we were at the retards' table, they get to do all the easy stuff."

Well, yes, I guess in your world, they do "get" to do all the "easy" stuff. But for one second I want everyone to think about THEIR world! I guarantee you, those kids aren't doing the easy stuff! The stuff those kids were doing at that table was more work for them than anything that particular child could imagine. I am certain that they were reaching more milestones at Alex's table than at any other!

As difficult as it is for me to help Alex, I can't imagine how difficult it is for him to navigate through this world! We should all try to spend a day in his shoes!

With that I want to tell you, March 3, 2010 is the day set aside this year to End the R Word. There is a link to the sight on the right of my blog, CLICK IT, get involved, get your kids and their schools involved. The End the R word site has ideas for activities, posters and all kinds of ways to make a day of it! Take these things and your ideas to counselors, teachers, parent organizations and best of all, student leaders! People need to think about people with special needs, let's help them to do it! END THE WORD ON 3.3.10

THIS IS ONE LITTLE PATH THAT MAY LEAD TO A WORLD OF UNDERSTANDING !!!!!!!

On the Edge of the Team

2010-01-19T20:37:00.007-06:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Will ? . . . Now ?

2010-01-12T12:28:00.014-06:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Road Map to Success

2010-01-06T22:29:00.001-06:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Facing Fears - And Finding Them, Too !

2009-12-29T13:57:00.002-06:00

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!!

Merry Christmas ! Shopping, too!!

2009-12-24T11:59:00.004-06:00

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 !!

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

2009-12-19T10:02:00.007-06:00

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/

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

2009-12-11T11:10:00.003-06:00

(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 !

What an Invitation After All !!!!!

2009-12-04T09:34:00.012-06:00

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!

The Perfect Tree

2009-11-29T20:48:00.010-06:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It's All Good !

2009-11-25T10:23:00.009-06:00

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

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

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

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

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

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

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

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

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

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

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

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

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

Things Should Be So Simple

2009-11-21T20:17:00.000-06:00

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

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

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

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

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

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

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

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

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

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

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

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

...Does Basketball End?

2009-11-18T13:47:00.005-06:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I am open to suggestions ?????

Basketball Begins....

2009-11-13T18:08:00.001-06:00

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

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

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

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

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

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

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

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

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

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

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

Just One of the Boys

2009-11-08T20:30:00.004-06:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

2009-11-04T18:30:00.001-06:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

2009-11-01T21:26:00.004-06:00

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

"Hello"
"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!

A Celebrity Among Us

2009-10-28T21:46:00.004-05:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Best Therapist

2009-10-22T20:53:00.007-05:00

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

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

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

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

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

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

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

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

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

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

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

Thank God for our built in therapist!

All He Needs is an Audience !!

2009-10-17T21:00:00.005-05:00

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

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

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

The center where Alex rides has an annual fundraiser event and fall festival.(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!!!

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

2009-10-16T18:12:00.005-05:00

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

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

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

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

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

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

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Funny how support finds you!

2009-10-15T09:29:00.006-05:00

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

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

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

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

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

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

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

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

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

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

Am I lucky or what??????

Carpools are the best!

2009-10-14T13:21:00.005-05:00

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

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

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

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

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

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

I Love the carpool!

What's for lunch?

2009-10-12T12:33:00.005-05:00

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

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

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

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

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

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

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

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

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

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

Our History

2009-10-12T11:22:00.005-05:00

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

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

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

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