Thursday, December 8, 2011

The darndest things…

I love watching Bill Cosby’s “Kids say the darndest things”. Jackson might not say the darndest things, but he definitely “does” the darndest things. Those things lead you to wonder where on earth did he learn how to do that?  My favorites are the ones that amuse Jackson the most giving him the contagious belly roll laugh.  The newest of these magical darndest things I have no idea why or where he got it from. If Jackson finds a tissue (used or clean), drier sheet, or cloth of some sort he will lift my shirt to pretend wash my belly.  Sometimes he scrubs it really hard and it leaves scratch marks.  I try to get him to wash Sara’s belly and he will for a short period of time, but he is more interested in washing my belly.  He has made it into his own little game and I am not sure where on earth he learned that.

The other day Jackson was over at his grandma SInky’s and grandfather Patrick’s.  Jackson’s favorite game to play at their house is playing ball on the stairs.  He loves to drop the ball between the wall and the banister so you can retrieve it and toss it back up to him.  Recently grandma and grandpa had their basement refinished and Jackson loves to run around silly like in the big space.  As we were watching him he was pushing his ball around while running he decided to roll over the top of it.  He didn’t do a full summersault or anything, but his head kind of skid across the carpet a ways…about a foot.  I thought he would stand up crying, hurt, or having carpet burn on his forehead, but he didn’t.  He thought it was fun and laughed as he continued to do this new trick.  We laughed along after we saw that he was OK.

Jackson is learning more signs thanks to his therapists and our hard work.  He has these baby sign language flash cards that he absolutely loves (I love Amazon: Baby Flash Cards).  The flash cards have a picture with the word on one side and the sign with the word on the other.  They are very colorful and grab his attention. Besides dumping the cards out of the box or making it rain with the cards Jackson has 5 favorite cards: Duck, Bubbles, Bath, Dog, and Hat. He will dump the cards out and look through all the cards to find those particular cards. When he finds them he gets really excited. He can say or make sounds for some of the words like duck and bubbles (bubbas) or he will do the sign for the card. Sometimes he will do the sign and say the word at the same time. The sign for hat is like putting your hat on top of your head. Since I wear hats all the time this is the same sign they are using for him to say my name, Nana.  We pronounce it like Nah-Nah not pronounced like the nickname for someone’s grandma. Lately I have noticed that he is also reading the words besides jut looking at the picture.  The duck card was upside down and he pulled it from the deck saying duck. My kid can read! When I got home from work yesterday Jackson started feverishly doing the sign Nana.  He was really excited to see me, although it took me a minute to realize that he was saying my name and not saying hat.
Besides his sign langue flash cards, he is using signs more often.  He is also pairing signs together mostly with please, which is good because being polite is important.  Last night he signed, “Cracker please”.  It made me chuckle because one of our favorite comedians, Mike Birbiglia, who does a skit on Cracker/Cracka Please. Although Jackson means the food; Cheez-It’s to be exact. Sometimes I don’t know what sign he is trying which has to be super frustrating for him at times.  I always feel bad and sometimes have to call Sara in to interpret.  He was making this sign I wasn’t familiar with, eventually I figured out that he wanted to play with my cell phone.  Seriously though, is there a baby class they take in the womb on how to use a cell phone?  I saw this with my nephews when they were toddlers, hand them the phone and they are calling people, texting, taking photos, changing your ringtones, setting calendar appointments, downloading games, turning it into a ninja weapon….  It is truly amazing what toddlers can do on those cellular devices, mostly better than most adults.

When we got the Christmas tree out this year Jackson walked up to it and started helping separate the branches and he pointed to the lights. Well maybe he was just feeling the branches, but it looked like he was separating them to me.  Pointing to lights might not be a big deal in most people’s minds, but for Jackson pointing was not an easy task to learn and at times he still struggles with pointing to things that he wants.  I was very excited that he pointed to the lights. The tree skirt has bells on the end, he really enjoyed shaking them. I say he was practicing for his performance.  We tried to put a few ornaments on the tree, got our fancy camera out to capture the moment, but Jackson enjoyed the noisy boxes in which the ornaments live in.  With some hand over hand assistance we put two ornaments on the tree and found that they came off more quickly than they were put on.  So we placed the two up high where he cannot reach and that is as far as we have gotten so far this year.  We might try again when is not around and see if he notices, otherwise we will have a top half decorated tree this year, which I am totally fine with.
This post could go on about all the darndest things that Jackson does….I think I will make it a monthly special and document them as my son does the darndest things.  I will end this post with the vamped up game of Peek-A-BOO!  I don’t know if this is a Fragile X thing or not, but Jackson loves to be startled.  He will close himself behind a door and open it expecting you to say Boo!  He will push you behind something, run away, and come back expecting you to say jump out and say Boo! He absolutely loves it when you startle him to the point where he jumps or falls down, like Sara’s does when she sees a spider.  He will even close himself up in a dark room and open the door waiting for you to jump out and get him.  I have never in my life met a toddler who loves to be startled or scared, but Jackson will hysterically laugh while playing this game.  I think he is receiving some sort of sensory input out it or he is becoming an adrenaline junkie. 

Monday, December 5, 2011

I’ve caught the Holiday Spirit bug

I haven’t been giving myself much time to blog these days and it has almost been a month since my last post. To be honest, I have been in funk.  The season change from Fall to Winter gets me every year.  It is dark when I leave for work and it is dark when I get home from work.  Usually when I sit in front of the computer to write a blog it comes out easily, but the last few times I ended up just staring at a blank Word document with the flashing cursor blinking at me.  Feeling uninspired even though my son gives me plenty to be inspired about each and every day.  I have just felt..  Meh..  but all that has changed after this past weekend..

First before I get to what has inspired me to get back to my blog….I want to rewind back to Thanksgiving.  The past few years we have been trying to find a happy medium for the Holidays by trying to figure out the best way to celebrate with both of our families.  Sara and I are both very fortunate that both our families live within less than 20 minutes.  The past few years for Thanksgiving we have either split the day between the two different families, celebrated at one families house on Turkey day and then the other families the next day, and we have also given hosting a try by having both families come to our house and enjoy having everyone together.  Sadly none of these three things have worked out so well and have been very stressful on the both of us.  This year we went with a different approach all together, we hosted just dessert. 

Thanksgiving Dinner
We cooked a meal for just the three of us which consisted of a Smoked Cajun Maple glazed turkey breast, sautéed green beans, mashed potatoes and gravy, roasted squash with apples and cranberries, and croissants.  If you mouth isn’t watering yet…here is a picture to get those salivary glands a pumping.  After we enjoyed our meal, we had time to relax before both our families showed up with many different desserts to share.  Sara’s dad made homemade apple pie, my mom made chocolate cake with cherries and whipped cream on top, my sister made pumpkin cheesecake bars, my sister-in-law made chocolate cherry cake with chocolate icing, and we supplied a pumpkin pie and my homemade oatmeal cookies. It was a wonderful dessert table to say the least.  Sara and I took turns with entertaining Jackson.  He was super excited to see his cousins Owen and Andrew. Jackson also loves to see his GG, my grandma.  Our house isn’t that big, but we managed to get everyone in and hopefully comfortable.  My brother Alex was not able to attend because he works for Wal-Mart and had to prepare for Black Friday. Jackson had a tendency of getting too close to Owen from time to time and he had a few hair pulling incidents. Other than that we had a wonderful evening and for the amount of people in our house Jackson did very well. It was a wonderful day all around.  

Jackson's new recliner
We did some black Friday shopping at some furniture stores.  Sara finally broke down and said I could have a recliner.   Oddly Jackson does well in all stores accept furniture stores.  I haven’t figured out if that is due to the lighting, the annoying sales people, or the fact that these stores are not stroller friendly.  I am sure he picks up on my anxiety in these stores as well.  After a few stops, we opted to wait until we could discuss what we truly wanted and we were home by lunch time.  Jackson fought taking a nap and got into his restless period.  So Sara called her mom to see if she would watch him for a little bit while we gave a few more furniture stores a try.  All I wanted in my recliner was brown, easy spill maintenance (fake leather or microfiber), rocking, and soft hug-me comfort.  Sara wanted a chaise rocker. We went to Ashley first, then Weekends Only.  I really hate going into Weekends Only, those sales people are like evil vultures.  Last time we were their this guy stalked us, we told him we were just looking, and when we were ready to buy something he wasn’t any where in sight so we found someone who was available and not creepy.  This creepy guy’s sonar went off from across the showroom floor as the sales woman was filling out our paperwork he came from out of nowhere and started yelling at her about stealing his customer right in front of us.  We made mention of how inappropriate and unprofessional he was from the beginning as we were filling out paper work. He continued to get irate in front of his manager.  So I get super nervous every time I go in that store.   Luckily this time it was crowded and the customer to sales associate ratio was 5 customers to 1 sales person.  The selection of recliners was 4 times that of Ashley.   Then there it was… a brown, microfiber, hugging, rocking, chaise recliner.  It was love at first sit.  Sara gave it a try, it was heavenly.  It took awhile, but we were able to find a sales associate and it was meant to be, only one left in the warehouse besides the floor model.  A quick call to Sara’s dad to see if we could borrow the truck and it was purchased, picked up, and hauled up the stairs in our home.  I was so proud of Sara for helping me get it nestled into it’s spot.  Not only do I love the chair, but Jackson loves it too.  He watches his Mickey Mouse Club House while rocking back in forth for 30 minutes or more.  It has been a wonderful addition to the family.  The rest of the weekend we were all so exhausted.  Jackson is finally over the day light savings hump and sleeping his normal schedule.  We even got a family nap in on Sunday. 

Jackson enjoying the stage
This past week has been full of events.  Tuesday night we went to have milk and cookies with Santa hosted by TouchPoint.  We went last year shortly following Jackson’s diagnosis of PDD-NOS. The event has face painting, a comic magician, a balloon animal/character artist, Christmas carolers, plenty of milk and cookies, and Santa.  Last year we had melt down issues when waiting in line for Santa, but we managed to get Jackson on his lap.  This year we knew it would be difficult.  We brought the portable DVD player loaded with Mickey Mouse Club House and plenty of Jackson’s favorite treats.  We were early this year hoping to get a good jump in line, only this year as we got in line they changed it and decided to call the children up by table.  So we went from 4th in line, to back at our table waiting patiently.  The line kept getting longer and they stopped calling tables at some point. There was little boy at our table that was having some major sensory issues and his mom was doing such an amazing job calming him.  We asked him if he wanted to share the Mickey Mouse Club House movie, but he wasn’t very interested in that.  He was much older than Jackson, so maybe not his cup of tea.  His mom sat with him like we did with Jackson as his dad took his sisters to the line.  I thought I would take Jackson over to the open area and let him run, but he was obsessed with the stage that was set up that had pre-decorated theme Christmas trees for the Autism fundraiser which was the next day.  I let him go up and down the stairs, but feared him bolting to one the trees and knocking it over. A volunteer came over to say hi to us.  She was in love with Jackson.  Come to find out she works in the play room at TouchPoint and started working a few weeks after we went through the parent training program. Jackson was pulling my hair a lot while we were talking.   The volunteer leaned in too close to Jackson and he swiped off her glasses.  As I was saying sorry she said not to worry she was used to that.  It is nice to be able to go out in public and not have to worry about explaining that your son has some impulsive behaviors.  Sara came over to us and we took him to mingle with some of the other kids.  He wasn’t interested in them, but the DVD player was working well.  We went back to the table and I left for a few moments to go get some more cookies.  When I came back, Jackson was pulling Sara’s hair and a volunteer was helping her.  Jackson did not like that I walked away from the table.  The volunteer was able help free Sara’s hair from his hands.  As Sara was thanking the volunteer Sara said, “I don’t think we are going to be able to make it to see Santa.”  With that the volunteer walked away and returned with a gift for Jackson. I almost cried.  He got a Teddy Bear that when you squeeze the hand the cheeks and belly light up.  He loved it and started giving it kisses right way.  He was getting really tired, so we left the event shortly after.  Hair pulling aside, Jackson was all smiles and seemed to really enjoy the event, we did too.

Friday night we went to a fundraiser “Holiday Lights of Love Gala” hosted by Action for Autism featuring special holiday performances by the children of Howard Park Center (Jackson’s school) and the American School.  The world-renowned artist Jesse Barnes was at the event and auctioned off several of his amazing paintings.  There were raffles and silent auctions throughout the event.  The night started off with the children performing before dinner was served.  I brought my video camera hoping to be able capture Jackson’s theatrical debut.  Since Jackson was performing, we received free tickets, so our table was at the back of the room, but that just meant I could stand and film.  All I can say is that Jackson completely stole the show.  His little learners class, which consists 2 year olds of half typical and half with special needs, was by far the cutest of the evening.  I wish I would have had my Tripod, so I apologize for my amateur shaky video.  I am also upset that in the middle of the performance the camera picked up on something else to focus on besides the children, but I was able to get it back in a few seconds.  All of the other video I took that night did not have the blur out problem, so I blame the Hamilton Black Cloud of luck.  Either way I was able to capture some amazing footage.  Jackson was not intimidated by the 100 plus people staring up at the stage.  He shook his bells without throwing them, well until it was over at least.  He smiled, he laughed, he danced, and most importantly he truly had a blast. He even made the crowd giggle at one point.  Jackson absolutely loved the stage.  Not that it makes any difference, but all the children that were on stage with Jackson were his typical peers, he was the only one with special needs.  Jackson did so well and I couldn't be more proud.  When all the performances were finished all the children handed out ornaments they made in class to all the attendees.  Jackson’s teacher stopped by our table with him in tote and he could care less that we were there.  He was trying to get her to take him back to the stage.  It warms my heart to see my son taking after his mother’s love for the stage and theater arts. Until Friday night, I was not ready for Christmas at all, but Jackson has definitely put me in the spirit.

Thursday, November 17, 2011

Itsy Bitsy Spider

Toddlers just don’t get Day Light Savings time; I think most parents will agree to this.  Before day light savings everything in the sleeping department for Jackson has been fairly consistent with bedtime around 8:00 PM wake up between 5:30 – 6:00 AM.  Around 30 minutes after Jackson takes his medicine, he will walk himself to his bedroom. He has also been staying in his bed overnight a few weeks.  Luckily Day Light Savings didn’t screw that up, however Jackson still an hour behind and. He starts getting sleepy at 6:00 PM, by 6:30 PM he is nodding off without his medicine.  We have been trying to wait as long as possible to give him his medicine and we are barely making it to 7:00 PM.  The earlier Jackson goes to bed, the earlier he rises.  So for the past two weeks he is getting up at 4:45 AM.  High fives all around… NOT!
Jackson was getting super crabby over the fact we would not let him go to bed a few days ago.  He was getting so frustrated with us he started to bang his head, so we decided not to push him further. He was sitting on the stairs between my legs as we gave him his apple sauce with medicine.  Sara went to walk away when she spotted a creepy crawly spider in the entry way.  “Eeekkk!” she shouted “Get it, get it….”  In our house it is my designated job to be the bug killer, only this time I couldn’t take care of it because Jackson laying on me and I was keeping him from banging his head on the steps.

“You got shoes on, step on it” I answered.  So Sara stepped on the spider, but when she lifted up her foot, the spider started to run away.  Those darn New Balance shoes have too many grooves and are not the best at killing creepy crawly things. 

“Eeekkkk!” Sara shouted and then she stomped and annihilated the spider.  Jackson looked up at Sara with a huge grin on his face.  When Sara lifted up her shoe, the spider was gone.  “Eeekkk!  Eeekkk! Eekkk!” Sara shouted again while she was shaking her foot faster than Michael Flaherty from Lord of the Dance.  It was about this point where Jackson and I started hysterically laughing.  “It’s not funny, get it off…Eeekkk!  Get it off!”  Then Sara starts swatting at the thin air.  She is still Lord of the Dancing across the play room.  

“Eekkk!”  Finally what was left of the spider flew off the bottom of her shoe onto the entry way floor.  She then kicked the welcome mat at the multiple body parts that were laying there.  I think it was a burial service, maybe even closure for Sara.  Jackson and I are still laughing hysterically. Sara tells us “It’s not funny”, but that just makes us laugh harder.  I am seriously laughing so hard that tears are rolling down my face.

After Jackson and I are able to slow down the hysterical laughing, I tell Sara, "That shit was YouTube funny" and we head up the stairs to go get PJ’s on. I opened the gate at the top of the stars and as Jackson stepped up into the living room he said, “Eekk! Eekk!” and continued to laugh.  I was so proud of him, not necessarily for making fun of Sara (well I will admit I got a kick out of it), but for imitating Sara.  Jackson has worked very hard in his therapy sessions on imitating motions.  This time Jackson imitated the sounds Sara made, not the Michael Flaherty routine that went with it.

Wednesday, November 2, 2011


There are some evenings that I get to have Jackson all to myself. I find them very rewarding because I don’t get to experience some of his accomplishments without Sara telling me and then having Jackson show me.  Sometime I am lucky and I discover something that he hasn’t already done or something that I got to teach him.  Tuesday night turned out to be night where he showed me something he has been doing that I didn’t know about and I also learned later that I taught him something.  Sara was out of the house because she had rehearsals for her show “The Big, Fat LGBT Everything You Need To Know Show of Shows”.  

Jackson and I finished dinner and played a game of chase up and down the hall way.  Then I needed to call Sara to find out when he last took his cough medicine. While on the phone with her I wasn’t able to get Jackson to the potty in time, so we had a poopy diaper.  It was bath night anyway, so straight from the changing table to the tub we went.  It was also a great positive reinforcer to get that diaper changed, “First diaper Jackson, then splish splash”.  Jackson had so much fun in the bathtub and I was drenched by the time he was done.  He really loves splashing and putting his face in the water.  After bath time I gave Jackson his cough medicine and Seroquel.  Then we went down to his play area for the rest of the evening.

We played a few games of match the flash cards, but Jackson wanted to do something different. He kept going over to his shelf and showing me a sign that I wasn’t familiar with.  I thought he was trying to tell me to sing “Twinkle Twinkle Little Star”.  He promptly told me no by shaking his head.  He does that a lot these days, we are working on yes.  He kept doing the sign and he was getting frustrated and then he said, “Buubbaahs”.  I still didn’t understand what he was trying to tell me, but there were bubbles on top of his shelf.  “Did you say bubbles Jackson?”  Jackson responding with jumping up ond down and shouting, “Eeennnwww!” Duh Na-na.  Jackson has these awesome bubbles that we bought at Gymboree, probably one of the only affordable items in that store. They are called Bubble Ooodles and they do exactly what the name says they make ooodles of bubbles.   The bubbles are also stronger than your normal cheep ones and they don’t pop easy.  So as millions of bubbles fill Jackson’s play area, he is running around very excited and laughing.  He would run towards me, tug on my shirt, and run away. I thought maybe he was trying to tell me he wanted to blow the bubbles.  So I got down on my knees and tried to show him how.  He would run up to me and run away. I showed him the wand and he looked at it from every angle possible, I mean he studied that thing in great detail.  I showed him how to hold it up to his mouth and blow.  He ran away, but came back. I tried again, this time he put his mouth on it, laughed, and ran away.  I kept giving him directions and showing him how to blow them and each time he would run away laughing.  Then he stopped, I held the wand in front of his face, he put his mouth on it, and blew.  Jackson made ooodles of bubbles.   I was so excited, I cheered, I clapped, I pretty much did everything besides giving him a parade.  This of course made him run away laughing, but he came back and did it twice.  We played bubbles for about 10 more minutes and it was time for bed.

I was so proud of Jackson and naturally I wrote about it on the Fragile X Facebook brag page.  While I was sharing this experience Sara came home from her rehearsals.  She was surprised to see me still awake.  I was still so excited.  I asked her if Jackson had ever blown bubbles before and she said no.  So then I got really excited to tell her how he went over to his shelf, used a sign I had never seen, then used the word “Buubbaahs”, and how he played when I blew the bubbles for him.  The best part was watching her face light up when I told her that he blew his own bubbles.  Although she might argue, for her the best part was when Jackson and Sara were home together the next day, he did the same thing for her.  

Thursday, October 27, 2011

A weekend full of events..

I took Friday off to have my car worked on and it worked out perfect as we were meeting up with friends to have drinks and watch the Cardinals play game 2 of the World Series.   Sara’s mom watched Jackson for us and he stayed the night, so that meant we would get a chance to sleep in.  Even though the Cardinals lost, the game was good and it was nice to catch up on some us time with friends.  Since Jackson is an earlier riser my internal alarm clock goes off every morning even when my actual alarm clock is not set.  So I was awake at 4:45 AM naturally and it took me just over an hour to fall back asleep.  Does everyone do this?  Then when grandma called to let us know she was on her way at 7:30 AM it scared the bejeebus out of me.  I was not ready to get out bed that is for sure.  Jackson had ABA in the morning and later in the afternoon, so after his morning session we went to the mall.  Jackson was great at the mall, rode along in his stroller with no melt downs.  He didn’t want to get back in his car seat though for the ride home.  This is common when he has been from car, to stroller, back to car.  Luckily we grabbed Auntie Anne’s pretzels on our way out of the mall and it helped us coax Jackson into his seat.  He also took a cat nap on the way home. 

Jackson’s afternoon ABA session we could take the therapist with us for an outing.  I don’t usually get to experience this because I am at work all day, but I think it is awesome the therapists go with us to help us if Jackson is having a behavior.   Sara wanted to go the pumpkin patch out by our house and since it was during the afternoon on a Friday I figured it wouldn’t be too crowded.  We found front row parking which was great and there was hardly anyone there.  The pumpkin patch has a huge playground area.  They have a cornstalk maze, wooden characters with the faces cut out so you can stick your head/face through, slides, and climbing walls.  Jackson was excited for slide.  He is getting really good at landing on his feet and standing up at the end when he goes down.  We found an empty wagon and Jackson sat right in it as I pulled him to the patch.  I think he really enjoyed riding the wagon along the gravel road, I am sure it was like sitting in a massage chair. When we got the patch there were a lot pumpkins still there to my amazement with Halloween being a little over a week away.  We didn’t see any pumpkins in the patch that we liked, so we headed to the already picked and priced pumpkins.  Sara found 3 awesome pumpkins while I entertained Jackson who was having a meltdown.  Jackson wanted to run down the very big concrete slope that leads down to the playground.  I tried to calm him by putting him on my shoulders which always has worked in the past.  That just ended in throwing my sunglasses, yanking off my hat, and pulling my hair.  I finally freed his both of his hands which were not easy to do while he was on my shoulders and got him down; he threw himself on the ground.  I am sure Jackson was able to read my frustration because then he started crying.  I don’t think anyone saw this melt down as it took me awhile to get anyone’s attention to come help me.  By the time Sara reached us, Jackson calmed down a little bit enough and I was able to pick him up so we could pay for our pumpkins and leave.  Trying to get him in the car was not an easy task either. It was also a bad ride home because Jackson kept putting his fingers down this throat.  I was able to get him to stop by telling him hands ready and luckily it was a short ride home.

Saturday is my flag football day where I go watch my team, Mich Light, play.  I retried several years ago, but love watching the games.  Plus my team is like a close nit family and I always have so much fun during and after the games.  Last weekend I brought Jackson with me since Sara volunteered to work the Fragile X booth at the Autism walk.  The team couldn’t believe how big Jackson had grown since last season.  Since my car was in the shop this weekend, Sara and Jackson had to chauffeur me to the game so they wouldn’t be without a car in case of an emergency.  Sara also needed to return something in the city, so Jackson and I watched the 2nd half of the 1st game together.  Well sort of, we really didn’t get to watch, it was more like me chasing him along the side lines and everyone saying how cute he is.  He is shy for the first 5 or 10 minutes and then he is good to go.  He gave a few high fives, slapped Junior and Trishie in the face (they had sunglasses on), and got some lovens from Marque.  Sara returned from her errand and contemplated staying or leaving since there was a game in-between Mich Lights next one.  These games are 45 – 50 minutes long, but we live 35 – 45 minutes away…so it didn’t really make sense for them to go home to just have to turn around and come back.  Sara took Jackson over to an open field and they played push and case, a made up game that Jackson loves to play.  He will push your butt and you either run in the direction he has you pointed, or if you are Sara you dramatically act as though you are going to face plant into the ground.  Jackson loves this game. I think it gives him some sensory input on his joints.  When he chases you around he laughs so hard and sometimes falls down, it is very adorable.  He played this with her until just before the 2nd game started.  I could tell Jackson was just about done with being in the park and watched until half time before we said good bye to everyone.  We were all exhausted on the way home.

Getting splashed by a penguin.
Sunday was Zoo day with the Hamilton’s.  My mom wanted to get everyone together for Boo at the Zoo and perhaps lunch or dinner.  I explained to my mom beforehand that the last few times we had been to the zoo, Jackson was done after about an hour, so I suggested we all drive separate in case my nephews wanted to stay longer.  She picked a date and time to meet up, but one problem Boo at the Zoo is at night and the Saturday before. We went last year and lines were so long that we didn’t really participate in the tables or booths they had set up.  Since it wasn’t Boot at the Zoo the kids couldn’t wear their costumes, but no one seemed to be too disappointed in that.  Everyone met up at our house and followed us to the Zoo.  It was crowded and we had 3 cars to park, so it was nice walk to get in.  Luckily it was another gorgeous day.  Jackson really enjoyed the Penguin house, he got splashed by one of the penguins. When we went to leave the penguins he started pulling Sara’s hair.  

The zoo had a bunch of ghosts, pumpkins, and skeletons in trees. They also had this grave site that had funny tombstone names.  Jackson was obsessed with following his cousin Owen around; Owen on the other was not amused.  Eventually we put Jackson back into his stroller and he did well for awhile. He did start putting his figures down his throat, but we had some crunchy snacks on hand that deterred that.  Andrew really wanted to see the tigers, so we headed to Big Cat Country.  It was around that time Jackson was done with the stroller and with the zoo.  I told my mom and sister-in-law that we had to go and if they wanted to stay they could, but it seemed everyone was hungry and ready to eat. So we headed back to the car.  This is when I wish we had the ability to teleport because we had 15 people in our group and not everyone understands that when Jackson is done, we have to high tail it. Jackson was getting frustrated and he was slamming himself back and forth in his stroller.  If we took him out of the stroller he took off running and when you tried to get him to go the direction you wanted or hold his hand, he melted like a wet noodle.  If you picked him up, hair pulling and head banging into your head or face was the next behavior.  There are only so many snacks you can give him before he is over that too.  As long as Sara was moving the stroller, he seemed to be doing OK. We also took off his Pujos jersey because it was getting warm. Since we have been to the zoo more than the rest of the crew and knew our way out I had Sara go ahead with the front of the group and I rallied up the back of the group.  We made it out of the zoo and to the cars in one piece. 

Jackson took a quick cat nap in the car while we drove over to Fitz’s.  It wasn’t very crowded there with it being late in the afternoon and they were bottling soda, so my nephews got to see that.  They took our large crowd upstairs.  It was really hot up stairs though. There were several TV’s playing the Rams game and some videos games for the boys to play.  Jackson was doing really well until poopy diaper time.  There were no changing tables upstairs, so we had to take him to the downstairs restroom.  The stairwell there is very long, high, and steel like the kind from a fire escape, not ideal for Jackson.  I picked him up and he did not like that and head butted me, but we hurried down the stairs.  After we got him changed, I had to use the restroom myself, so Sara took him back up.  Jackson did not want to go back into the highchair, so by the time I got up there I could Sara was really upset.  She was redoing her ponytail.  My mom came down from the other end of the table to talk to us and said if one of us kids would have ever pulled her hair like that, she would be in tears.  She told Sara she was amazed at how she handled it.  If it were her she would have pulled the child’s hair back.  I tried to explain to my mom that is the old way of disciplining and with Jackson that would not work.  Then our food was there, so we would have to discuss that topic another time.

After meal time the boys were running around and we let Jackson out, he of course wanted to go back to the suicide stairs.  So I had to keep him corralled in the area where we were.  If he wasn’t trying to make it over to the stairs he was chasing his cousin around.  Owen is only 7 and it is hard to explain to him why Jackson keeps getting so close and why Jackson won’t leave him alone.  Jackson is almost as tall as Owen and we were back at the table when Owen looked at Jackson and Jackson smacked him in the face.  Luckily it wasn’t hard and my sister-in-law told Owen not to worry about that, then not a minute later Jackson smacks him again this time hard enough to bring Owen to tears. I redirect Jackson away. Sara and my sister-in-law talk with Owen. Owen is really upset and doesn’t understand. I think Sara did an amazing job and explaining to Owen that when Jackson gets really excited he don’t know how to express it, that he wasn’t trying to hurt Owen.  I think Owen accepted that, at least until the next visit.  Everyone settled their bills and we were all heading home.  Jackson did not want to go in his car seat, but once we got him in everything was fine.  Sara sat back with him on the ride home.  I think the Fitz’s environment was not ideal for Jackson, but all things considering he did a really good job.  I think I zoned out most the way home because I don’t remember too much of that. 

Saturday, October 15, 2011

Grand Master Flash

Jackson has been working so hard in his therapy sessions and since I am at work during the times he is receiving him, I sometimes feel I miss out a little on his accomplishments.  Sara tells me about the big ones and will show me them when I get home. Yesterday Sara showed me how he can get up in his car seat all by himself and when we got to the store he got out all by himself.  That was really cool.  They are also working on him getting on and off the potty.  He isn’t potty trained yet, but the entire house knows when number 2 is about to happen, so Sara has been really good at getting him to the potty for that since he turned 2. No pun attended.

This past weekend Jackson and I got some just the two of us time together and he was obsessing over these flash cards he has. I let him get them out and he was a little frustrated because I didn’t pick up that he wanted me to play Flash cards with him.  It has been awhile since I was home for a therapy session, but I remember him playing match with one of the therapist.  So I set 4 different cards in front of him and had him match the identical card with the one on the floor.  He got it right every time.  I was so excited. The last time I seen him, he wasn’t that accurate.  We played match for an hour. 

The other day I was telling Sara about this when we were all downstairs. She said, “Oh…did you use the cards in his box?”  Jackson has this huge storage container that has a bunch of toys, puzzles, and other skill type items that all the therapists’ use with him.  I said, “There are cards in his box? I didn’t know that, we just used the ones out of his toy bin. Why?”  With that, Sara opened the bin and grabbed a big stack of flash cards.  She laid out just 4 in front of him; unlike how I did where I let him dump the entire box of cards out and spread them all over. LOL!  Then she grabbed a card that had the same object on it, but it was different, like from a different box of flash cards.  A few examples, one was small yellow ball of yarn and its match was a big multi colored ball of yarn, one was a baseball and its match was a beach ball,  one was a Queen and her match was a King.  Holy crap! My son is so freaking smart.  I don’t know if two and half year typical developing children can do that, or if that is what he is supposed to be able to do at this age, but either way I wanted a bumper sticker that said “My kid is smarter than your kid”.  The cutest part of the game, every time Sara handed him a card to match…he would study it by turning it around and around a few times. When he matched it, he looked at you with the biggest smile on his face waiting for you to applaud. Believe me I did.

I discovered another awesome trick on my own the other night.  Since Jackson was about 4 or 5 months I would make him turn off the lights when we would walk by them. It didn’t take him long to master this, and when we were taking him to the doctors and they would ask us if Jackson does anything on his own, I would proudly puff my chest up and say, “He can turn of the lights if you hold him by the switch.”  That would always get discredited though because they felt that was a routine task since I had him do it every time we left the room.  Either way, if I am carrying him by a switch, I still make him turn it off.  The other night I was taking him to bed; he was more ready than I knew at the time.  He walked down the hallway; I turned on the light, turned on his Baby Einstein CD, and turned on his turtle that projects stars on the ceiling. Jackson was standing by the doorway and I went to get him when the lights went out.  I thought, wait…did the bulb go out again? Did I accidently brush up against the switch? How the heck did that happen?  So I turned them back on.  Jackson fussed at me and reached up and turned them off.  In disbelief, I turned them on again and ask him to turn off the lights.  Voila off he turned them.  A few days later we were all in Jackson’s room and I asked Sara, “Have the therapists been working on Jackson turning off lights?” Sara looked at me funny and said, “Um…no, why?” I strutted over to the switch and said, “Hey Jackson, show mama how you turn off the lights.”  Jackson got all excited, ran over, reached up, and turned out the lights. I turned them back on and said, “Do it again, please”.  He humored me and turned them off.  So Sara came over and said, “Jackson, can you turn the lights on?”  He had a little trouble with it at first, but he turned them on.  Then we couldn’t get him away from the switch for awhile and Jackson‘s room looked like a club without the thumpa-thumpa music. You know I was dancing along with the flashing lights in my mind.     

Tuesday, October 11, 2011


I enjoy leaving work every day; mostly because when I get home from work I am greeted by two dogs, Sara, and Jackson.  We are fortunate to have a two car garage and as soon as it starts to open Jackson is at the window jumping up and down. It has taken a long time for him learn how to jump and down, and he doesn’t have the best balance when he does this, but man it is so much fun to watch. When I open the door and come into the house, Jackson will run up to me, grab my laptop backpack, pull it off of me and then take off running. Sometimes he uses his upset voice when he does this, I am not sure if he equates the backpack as me leaving like I do in the morning.  He runs a few feet away and then takes off running toward me all excited.  I scoop him up and he gives me kisses, and then right away he wants down.  Lately he tries to throw himself backwards when I pick him up so he can hang upside down, a neat trick he learned from his Aunt Tricia. I make him give me a kiss before I let him go upside down. He just laughs so hard when we do this; it is a highly contagious laugh.  One thing for certain is you have to be very prepared for him to throw himself backward because it is sudden and he is strong.  A few times I have come home and he is in the middle of one of his therapy sessions, his therapists are tickled when they see this interaction. 

Once I am home, changed, and settled we all go for a walk, or sometimes Jackson and I will play catch on the stairs.  I have been tossing a ball at Jackson since he was in his jumpy contraption, so he can catch several different types of balls in various sizes.  I have tried to put a ball glove on his hand, but no luck with that just yet. Jackson has a few of those large bounce balls that are sold in cages at any store.  Our house is a raised a ranch and the stairs are split in two levels.  Jackson will stand or sit in the middle while I stand at the bottom to toss the ball up to him; he catches it most of the time. He likes to roll the ball down the railing, which isn’t easy because the ball is so big and railing is so skinny, but sometimes he gets it just right. He has also mastered a new skill which is balancing the ball on the railing, rolling it backwards, and getting it stuck between the entry way ceiling and the rail.  Since the first time he did this, I gave him a huge reaction with my arms up in the air while shouting “Ta-da”.  Jackson will then laugh and punch the ball out from being stuck. I am not kidding when I say we play this game every day.  Before I throw the ball up, I make him tell me ball. He will use sign language and now verbally say “Ball”.   Sure most people fight over when and what their child’s first word was “Mama” or “Dada” and I have seen some hard core arguments and fights over it and I will always think that is the most ridiculous debate.  One of my son’s first words was “Ball” and I couldn’t be more proud. How awesome is that!  Oh…and now he is trying to say “Ta-da”, it is more like “Ah-da” and it is high pitched which sends the dogs running, but you will never see me cover my ears.  

Friday, September 23, 2011

Happy Anniversary...

Today marks 5 years of being unlawfully married to Sara.  To be honest is hard to believe it has been 5 years already; it really does seem like just yesterday we promised to spend the rest of our lives together.  I remember so many details from the proposal to the planning to the actual day.  I always knew that someday I would get married and have children with someone, but I wasn’t one of those girls who dreamed of their wedding day.  Sara on the other hand was borderline Monica Gellar.  She knew what she wanted in a ring, a dress, and the fine tuned details that go into a wedding.  So in lieu of our special day I thought it would be great to share a recap.

The ring:  Sara talked about diamonds a lot during our dating days.  I knew nothing about diamonds except that they can cut or scratch glass. Being the geek I am, I used the World Wide Web to research how to find the perfect diamond.  I learned the “3 C’s”: Cut, Clarity, Color, the only problem is even though Sara talked all the time of what she wanted I couldn’t wrap my brain around the perfect ring for her.  So I tricked her one day when we were out and about shopping, took a specific way so we could stop at a jewelry store.  As we got closer, I was like…”Hey isn’t that where Clarkson Jewelers is? We should go in there and take a look around, what do you think?”  To a girl who loves to talk about diamonds it was an easy pitch and I don’t think she suspected a thing.  We walked in the store and start looking around. “Sara Leahy?” someone shouted from behind the counter.  It was someone that Sara went to high school with, Stacy.  It was a huge sigh of relief because I felt like everyone in the store was staring at the two girls who walked in.  Sara tried on just about every ring. Stacy and Sara were like two little girls playing with their moms’ jewelry.  I was more interested in the watches, but definitely not interested in the price tags. I asked Sara, “If you had pick one ring, what would you choose?”  She quickly went to the one she like most.  Stacy asked her, “What kind of cut and size are you looking for?” Sara told her and with that a vault door opens and here comes these individual packets of diamonds.  Next thing you know we are looking through a scope at all these different diamonds.  Sara picked the one she liked the most, Stacy wrote it down, even measured Sara’s finger, and gave prices for the different styles.  Of course the next question was, are you guys going to buy something today?  We both looked at each other and said, “No…we were just looking.”  We left shortly after that and I knew I set myself up for talking about diamonds for the next few days.  Also the talk about that is too much money, don’t ever spend that on a ring, but I really love that one. Come Monday morning I called Stacy up at Clarkson and told her to order the ring and picked the platinum setting, it was more expensive, but it was the one.  Stacy seemed super excited.  The ring would take a few weeks to arrive.

The proposal: Sara has a group of close friends called the OBG’s (Official Big Girls).  The friends range from old to new, some from high school some from college and friends of friends who are members.  Every year the OBG’s have a holiday party and ironically the party was around the same time the ring was ready. I thought using the holiday party was a perfect way to propose since all of her closest friends would be there. 

The Holiday party is a blast, each year it is hosted at the person who opens the White Elephant during the gift exchange. Everyone brings a gift for no one in particular, the gift goes into a pile, and then in one by one (in a particular order) someone picks a gift from the pile to open or steals an opened gift from someone else.  This happens until all the gifts are unwrapped and the stealing ends. Each year it seems that the rules change, but I thought it would be awesome if I wrapped the ring and somehow Sara ended up with it.  This would require some assistance from someone from the OBG’s.  I knew Sara’s best friend Cray wouldn’t be able to keep this secrete from her, but her other best friend Tom (Tommy) would be able to.  I waited until the last minute to go shopping for my OBG gift on purpose. I had some other errands to run (not really) so I told her I would get my gift while I was out.  I stopped at Target with a few gift ideas in mind, but knew I wouldn’t be able not show Sara what gift I got when I got home or she would think something was up.  So I decided I would buy two separate gifts. The two ideas I had were a Barbie or a Mrs. Potato Head.  I stopped at Target on a quest to find either one and found both.  The goal was to find something that Sara would want to steal and I wasn’t feeling the two I had in hand.  I went up and down the aisles for extra inspiration and in the clearance aisle was a Potato head family bucket.  I am not kidding Mr., Mrs., and kid Potato head in one bucket.  I was so wrapped up in this awesome find I can’t remember what my actual OBG gift exchange was.  I called Tom while I was on the way to pick up the ring and went over to his house. He was the first person to see Sara’s handpicked ring.  He cried a little.. I saw it.  I even got wedding wrapping paper instead of Christmas to wrap it because I thought it would draw Sara’s attention.  We discussed how we would fix the exchange so no matter what she would end up with that gift. I stuck the box with the ring into a Potato head butt wrapped it and Tom was going to bring it to the party.

The party this year was at Todd’s house.  Sara didn't expect a thing.  I wasn't nervous until Sara’s ex showed up to the party; it was super awkward for me. Tom had talked to Missy about the engagement, so we went over the details.  We had to sort of fix the gift exchange this year because once a gift is stolen 3 times; it becomes that 3rd person’s gift.  Sara had already been counting the gifts and realized that there was an extra gift.  She was very adamant about the extra gift; however someone came to the party without a gift so it all worked out. Sara didn't like that; you can’t bend the rules around Sara.  We made sure that Sara sat in the chair that begins the present game.  I was shocked that she didn't grab the gift wrapped in wedding paper, although she did pick it up.  The plan was whoever got the gift with the hidden ring, if it was stolen once then Tom or Missy would steal it the 3rd time.  Interestingly everyone kept avoiding the wedding paper wrapped gift…until the ex’s date grabbed it.  I am sure my face was priceless, but no worries we still had a good plan.   Missy kept talking about the Potato head family bucket, how she wanted it really bad.  Sara whispered to me…I want that so if it makes it to us, you might have to steal it.  Sweet, my plan is working she wants the heads.  The stealing was crazy this year and we went back around the circle.  Missy stole the Potato head bucket making it number 2 and Sara jumped up stole it from Missy making it number 3, so no one could steal it back, even though she ended at Sara any way.  So everything worked out. Missy told Sara, “You should get them out and put them together.  Gosh…I wanted those so bad…”  To that, Sara opened the bucket and started taking out the Potato’s.  She came across the one that was really heavy.  When she opened the butt, she was like… “What the…” and I was down on one knee.  Then in true Hamilton black cloud fashion the darned box would not come out of the butt.  Tom and I practiced this for like 20 minutes and it was flawless.  Finally I got the box out, opened it up, and asked Sara to marry me…and she said YES!

The Wedding: I think everyone expected Sara to be a Bridezilla, but she was so far from that.  We knew we up front we would be paying for the majority of the festivities out of our own pocket. We had originally thought of using some friends who were getting ready to launch a new company for party planning, but we opted for planning on our own after we saw how expensive their ideas were. I never knew flowers were so freaking expensive.   We started saving and planning early.  We got so lucky on so many levels.  It helps when you know a lot of people who know a lot of people.  When we walked into the reception site the planner knew Sara’s brother, so we got a friends and family deal on that.  We found a nice place in Tower Grove to have the wedding and it was available. A friend of mine knows an amazing DJ/Karaoke duo; they did it for free (we just tipped them well).  Sara’s sister-in-law is a photographer. My friend runs a limo place, another discount.   Tom has a flower contact and as a gift to us, Michael and Tom paid for the flowers.  One of Sara’s bridesmaids, Jami, is amazing at hair and makeup.  It was crazy how everything was panning out.  Then we went shopping at Target, Sara found these awesome dresses that would be perfect for both our bridesmaids and ironically they had everyone’s size.  Then we went to Kohls and they had a sale on shirts, so we got shirts for the brides groomsmen/women.  We did our own invitations, went to Michaels with a 40% off one item finding the ones we like and discovered at the register they were on clearance.  We went to Things Remembered to get our wedding party gifts, we got a discount there.  Sara’s brother was going to officiate our wedding.  Everything fell into place so smoothly without breaking the bank.

We had a quick rehearsal at our house the night before.  It rained all night, but that didn’t diminish anything.  I thought for sure Sara would be freaking out, but she wasn’t.  She left to stay the night at Cray's and in the morning went to Tom and Michael’s to get ready.  My brother and sister, Alex and Katelyn, were staying the night with me.  Sara didn’t know that I had planned on decorating the wedding sight with balloons, candles, and rose pedals.  Tom had brought me a few dozen white roses, so Katelyn and I started turning them into just pedals, leaving a few full flowers for decoration.  The morning came quickly. We packed up the car and headed to the city, it was raining.  First item on the check list was getting the hotel key, as we pull into the hotel parking garage Alex realizes his left his shoes at the house.  The hotel will not let me get the room because it is in Sara’s name and even though we both have a credit card with the same numbers the room is reserved on, they will not give me the key.  I call my best woman, Amy, whose house we are going to get ready and she suggests stopping at Payless, but Alex has a size too big than what they carry.  I tell her we are going to bolt home and get them, got back to the hotel to park the car, have Amy pick us up, go to the park to move the tables, then get dressed and ready.  Surprisingly we made did it all in good time.  I needed to iron everyone’s clothes and take a shower.  My other best woman Andie arrives from Chicago and we head over to the park to set things up.  I had table clothes, mirrors with candle holders, candles, rose pedals, roses, and helium balloons in our wedding colors.  How we got that all ready in time is crazy to me.  Then our families started showing up, we only has our family at the wedding ceremony.  Everyone was asking my wedding party, how’s she doing? She doesn’t seem nervous at all?  I think everyone was surprised how calm I was.  Then this idiot riding his bike pedals over to our site for whatever reason. He rolls over and pops one of the candle holders…glass everywhere.  I kept my cool, but Andie on the other hand went off, I thought she was going to tackle that biker.  She is very protective of me

I remember seeing the Limo pull up; music started and everyone took their places as Sara’s wedding party walked down the longest walking path ever.  My wedding party thanked me for not making them walk down that. Sara stayed on the Limo until everyone made it down, her song came up: ABBA – “I do, I do, I do…”, and then I remember seeing the most beautiful woman I have ever seen make her way towards me.  I still can’t believe she let me marry her.  I wrote our wedding ceremony and together we wrote our vows.  Her brother got choked up while he officiated, to hide that he laughed a little.  It was funny.  The ceremony was amazing and we all toasted at the end with the best champagne ever,  four dollar Verdi. It was way more than I imagined it to be. 

Then it was picture time.  We drove around the park and took a lot of great pictures, then around St. Louis to all the traditional wedding photo spots.  Our wedding party gifts were these stainless steel stein mugs with their initials on them. Everyone was using theirs to drink out of during the Limo ride.  When we got off the Limo at Kiener plaza there were so many other wedding parties there.  The best part was some groomsmen walking toward us complimenting our dudes….uh…um…ah...chicks for their cool steins.  Oh the facial expressions were priceless when they realized we weren't like the traditional wedding groups.  We had some girls in dresses and some in shirts and pants.  Our parties were mixed boys and girls.  It was great!  The only bad thing was our Limo didn't have a restroom, so we made a pit stop at Rue 13.  They weren't open yet, but they let us in and the owner bought us a round of shots. 

The reception:  We showed up to our reception and our wedding party seemed to have a blast on our picture outing.  They announced the wedding party into the room. We didn't have formal tables set up so everyone could sit with whoever they wanted.  We picked the Schlafly Tap room because they had an amazing area to host this special occasion and they have some awesome beer. Our main goal was for everyone to have a good time in a relaxed environment.  It was so great to see all our friends and family in once place.  We didn't do a cake cutting and shove it into each other’s faces, instead we had three different cakes sliced up and ready for eating.  We had music and Karaoke which I think I was huge hit.  We also had some wedding crashers.  Many of my friends said it was one of the best wedding receptions they had been to; even our wedding crashers I later met at a happy hour said they had a blast.  I didn't get a chance to eat any of the food because there were so many people to talk to, but I never had an empty glass.  The reception seemed to fly by so fast; in fact I thought the entire day was over before it started even with the extra little hitches.  It was purely magical from start to finish. 

Now here we are 5 years later, still in love and still magical…

Friday, September 9, 2011

Japanese Festival with Fragile X (times two)

Over the Labor Day weekend the Japanese Festival was in town at the Missouri Botanical Gardens. Sara and I haven’t been since she was pregnant and we had a lot of fun, even though it was extremely hot then. We also got to attend a tea ceremony, which we waited in the heat for a few hours to enjoy. It was a great experience to say the least. This year we have membership passes to the Botanical gardens, so it makes it cheaper for us to go to special events like this. The weather cooled off and we selected Sunday as the perfect day to go. I could tell Sara was wanting the amazing experience we had a few years ago and she was hoping to get some really great pictures…a perfect opportunity to play with our new digital SLR camera. Jackson fell asleep as we got closer to the gardens and I knew it was going to be very crowded by seeing all the full parking lots. I went straight to the main lot because earlier I had requested a close spot from the Universe and so I knew we would get one. Thank you Universe we got a really great parking spot.

It didn’t take very long to get our tickets surprisingly the lines were short, but getting into the garden I could see was going to be extremely difficult. There were so many people in the main entrance and we all know how considerate people are when you have a stroller you are trying to maneuver around. It is really difficult for me not to punch someone as they rudely pass by and while doing so they give you a look. When we got inside Sara had to use the restroom, so Jackson and I parked the stroller over in a corner. It was very loud in the building and the line for the restroom looked long. I found some goldfish to attempt to entertain Jackson as we waited for Sara to finish. I could tell he was having a hard time; it definitely had to be sensory overload for him. Eventually he started thrusting forward then slamming himself into his stroller. Sara had left her purse with cell phone in my possession, so I couldn’t just take Jackson out of there I just kept giving him goldfish and tried to get him to laugh or smile. Sara finally emerged from the restroom and once we got outside and that nice cool breeze hit Jackson in the face, he was just fine. There were tents of stuff all over the place with tons of people walking around.

We agreed that taking Jackson to an open area to run around for a little bit might help his overstimulation. We found some open space, took him out of the stroller, and got the camera ready just in case there might be opportunities for some shots. Jackson was completely focused on the stroller, for whatever reason all he wanted to push it around and do nothing else. Sara was focused on getting the perfect picture, so she too was getting overly anxious. After a little while we agreed to walk further, maybe if Jackson walked and pushed the stroller he would be ready for pictures, it was obvious that now was not the time.

There are all kinds of tents and demonstrations going on throughout the park. Around each tent are herds of people. I could sense Sara’s frustrations level rise as we pass them because Jackson is on a mission to push the stroller around and Sara is on a mission to see everything. We walked right past the guy that spins things, saw a poster for a pottery demonstration that was going to happen in 15 minutes, but we couldn't stop at them we had to keep trucking on. Then we stumbled upon a path that looked less traveled. There were no festival signs pointing down this path, so we thought we could go that way for a little while to get a break away from the crowds. Jackson was now following behind me as I pushed the stroller, every now and then I would turn back and say, “Boo!” to which he would stop and laugh hysterically. When he wasn’t laughing and he was following me doing his Fragile X sound, “Ennneewwwww”. It was very loud and very constant, which isn’t normal for Jackson to do. We only hear the Fragile X sound when he is really excited, so I thought it was great to hear him using his vocalizations. You could feel the other people staring as they passed us by and at this point and time I could care less to be honest.

The path was fairly big and very green and floral, it was a beautiful setting. There was also a neat little hut thing with two chairs and a little table. I could see myself sitting there in the morning drinking a cup of coffee as the sun rises. Sara suggests giving Jackson some food, perhaps one of his Go-Go-Squeezes. Maybe he can sit in the chair as I give him a few bites and then she can quickly snap the picture. We can each take turns to try to get in with him. Jackson somewhat went for it, but that didn’t last long. He sat up in the chair all cute, took a few sitive reinforcer.
Along this path is a small garden off to the side named the butterfly garden. Sara really wants to get a picture of her in this area because the flowers are so beautiful. So we push Jackson next to me, while I give him some pretzels and snap some pictures of Sara. We also got some great pictures of a monarch butterfly who happened to be near by, I mean were in her garden. Jackson again started to thrust himself in the stroller; it is time to move on again.

We decided to walk towards the Japanese garden, our favorite place. Along the way were some Coy fish wind socks. Sara wanted to get some pictures of that, so I told her to go ahead and Jackson and I will keep walking. Jackson seems completely fine in the stroller as long as we are walking. Uh-oh there’s a fork in the path way, to the right Japanese garden and to the left…who knows. So we go up the path a little ways, and then come back to the fork. Sara isn’t too far behind so we can do this for a little while. There was a great breeze blowing, it was keeping Jackson calm. Sara is walking towards us and then he starts thrusting back and forth again. We take him out of the stroller and he is following behind me as we walk. Sara stops a few times along the way to take some pictures and we make our way back towards the entrance.

Sara has to make a pit stop at the restroom. Jackson and I walk over to this fountain while she is gone. I am finally able to distract Jackson from the stroller with the water fountain. Sara walks up and we are able to a bunch of shots of him having a blast in the water. I am still noticing people walking by and staring at us. Makes me wonder if they are staring because I look like a boy, or if they think we are bad parents for letting our son splash in the water, or is it because he is making unfamiliar noises to them. I don’t even know why I am giving other peoples ignorance a second thought here, but seriously if you want I will glad you give you a picture of my family so you can stare at it all day long. If you are really that curious, lend me your ear so I can educate you on my family and how much love we have for one another, while I am at it….I can also expand your mind and teach you about a syndrome that so many people have never heard of. Opps….sorry…tangent, but believe me I look at myself in the mirror when I am thinking all these things, trying to remember if I have ever been a person that stared at others. I am sure there has been a time or two, but I do know that my mom taught me not to judge and in my religious days the Bible taught me the only one true judge is God himself. Even though I am not walking the Christian walk theses day, I still hold that teaching true to myself, so I guess I am at fault for expecting or hoping others hold that belief too. Anyway, after several pictures at the fountain we are able to get Jackson back in the stroller and head towards the crowded tent area.

I know this is important for Sara, so I tell her I will keep Jackson off to the side so she can look through all the tents. I knew she was really excited to see the tent with all the wall hangings. She isn’t gone too long and I can see some disappointment in her face. There is one wall hanging I can see from where we are at that gave me a huge chuckle, it is a picture of Buddha and below it is a scripture from the Bible. I am guessing this is the cause of the disappointment, and I am right. HA! We got a good laugh out of it as we headed towards the food area. I pulled Jackson over off to the side because the tent with tables was so overly crowded and I knew it would be bad for us to go in there. We agreed to use the tag team method on getting food. Sara went and found something, came back to us. While she was gone I was feeding Jackson a peanut butter and strawberry uncrustable. He was half way through it when he started to put his fingers down this throat. I guess too many snacks before sandwich = belly ache. I diverted his hands quickly, but in the process got chewed up PB&J all over my hands as well as Jackson’s. Sara had walked up around that time and luckily had extra napkins. We quickly get cleaned up and Sara hands me the money and tells me to go on and get my food. Then Sara is freaked out about sitting the grass, wondering if it is wet or if bugs will crawl on her. I am worried that as soon as I walk away things will become disastrous and Jackson will stick his fingers down his throat more and throw up, so I chose to walk Jackson around the area in his stroller. He was getting super fussy and by this time my patients is maxed out. Sara was still eating and I asked her she could bring it to the car so we could load up and go. She agreed that was a great idea and to the car we headed.

We took Jackson’s wet clothes off and got him in the car. Sara sat back there with him as I drove us home. Once we were in the car, he was completely fine the entire way home. Sara was finishing up her dinner when her fork snapped in half, I think some food got flung around in the back seat and all I could do was laugh hysterically. I couldn’t help it, I had to laugh. When we got home I needed some time to myself. I went to the refrigerator and had one of those moments where nothing we had was good enough and I didn’t feel like making anything either. I hopped back into the car and got something to eat. I almost had a melt down at the drive thru moron who repeated everything back to me wrong. My dad always complained about this issue and claimed it to be the curse of the Hamilton black cloud. Luckily for the drive thru guy the food in the bag was right. The quick drive was just enough for me to calm down, when I got home I shared my vittles with my little man and lovely wife.

Man, what a day!

Tuesday, September 6, 2011

Softball is over, now what..

Sara and I both have our individual things we do outside the home without each other or Jackson. I think it helps keep the sanity in our house. My thing is softball. When Sara and I first met, I played softball 5 nights a week in spring, summer, and fall. Also in the fall on the weekends it was flag football. After my last knee surgery I gave football 3 more years and decided I needed to retire because it was really rough not just on my knees, but my entire body. When Sara and I started to get more serious, I wanted to spend more time with her, so I started to dwindle down my softball play. When Jackson was born I was down to two nights a week, one Co-Ed league and one women’s league. I have played for both these teams for several years. Last year the Co-Ed team folded which left me with just my girls team. I have played on this team for 10 years. We have changed our team name a few times and we league hop all around the St. Louis area. This year we came back to the city after playing at Bridgeton (BMAC) for 4 or 5 years.

My friend Sophie likes to point out that I was the first token lesbian on the team and at one point I was also the youngest, but we have adopted a few more players over the years so I am no longer the youngest and there are 2 more who ride on my side of the fence, or bats for my team as the sayings go. Any of you who know Sophie can hear her laugh about right now...

One of the best things about this woman's team is it doesn’t matter who you are, they accept everyone who comes to play with us, no matter if you are a sub or become a full time player. These woman are truly amazing and a complete blast to be around. I am so lucky to be a part of this team. Our team name speaks for what our team is about because we are “Here for Beer”. Last year I believe our team name was “AARP”. I love playing softball with these ladies. Every season we pick-up where we left off, of course our bats are little rusty, but it is like we all saw each other just last week. My summer wouldn't be complete if it wasn't for my Double D (daisy dukes) speed on the bases or Bay Watches lack there of, then again we also have a Bill Joel that runs as though she is caring that piano on her back. We laugh with and at each other so hard every week the next morning it feels like you did hundreds of sit-ups or crunches.

This year we had a lot of rainouts and a lot of forfeits, so we didn’t get to see each other as much throughout the season. We were able to muster up enough wins to get 1st place in our league and make it into the playoffs. The playoffs this year were awesome because they take the top 2 teams from each league and you play until you lose. Sadly we lost our first game, but it was a great match. We went 10 innings with one my former teams from several years ago. It was great to see the familiar faces and knew we had a run for our money.

I am sad that the season is over, even though I injured my throwing arm I wish we were still playing. The girls were talking about getting together one night a week for Yoga class, but that is so not my cup of tea. I can’t touch my toes even after stretching for hours. Seriously, can any of you see me doing a downward dog, or whatever it is called? I am trying to find something for me to do during the off season. We bought a new digital SLR camera a few months ago; perhaps I should take a photography class or something. Flag football season starts up here in a few weeks, so there will be that. Hopefully I find something in the meantime though because I am getting a little stir crazy.

Thursday, September 1, 2011

A possible match

We were a little leery at first on the Seroquel; Jackson was still waking up in the middle of the night.  The first few days on it was also taking us around an hour and a half to get him to sleep.   After 3 nights we emailed our FXS doctor because the half dose didn’t seem to working and we forgot to ask how long we needed to give it to see positive results. She said with the results he is having we can bump him up to a full dose and we should see good results in a few days. She also said that some of the behaviors will also decrease after a week.  I will say so far so good now that he is on a full dose.  We got 2 nights in a row, Sunday and Monday, without waking up in the middle of the night.  Unfortunately Monday night I played softball and re-injured my shoulder enough that it kept me awake all night. We have also eliminated Jackson’s nap time, which I think is helping him stay asleep. Nap time has been a struggle for awhile now anyway and he doesn’t seem to slow down in the middle of the day without one. From time to time he will take a little power naps in the car, but they don’t amount to much at all.

His behaviors haven’t increased, but they also haven't gone away.  The therapists are hoping that if we can find something he will chew on; it might decrease sticking his fingers down this throat. Sara is crafting something for him to chew on.  He used to do really well with the “P’s and Q’s”, but now he won’t wear them around his neck and for him to hold one without throwing it is impossible.  We are still working on the head banging, but it isn’t as frequent as it was on the Clonidine. Sara has been giving him deep pressure rubs and I have been playing rough and tumble and the combo of the two seems to be helping a lot. So the Seroquel so far has been very promising. 

Wednesday, August 24, 2011

Sleep, wherefore art thou…

Dr. Ave Lachiewicz discussed behaviors and treatments a few weeks ago at the behavior workshop that we attended. One of the topics in her discussion was based on medication.  Everyone is wired differently, so sometimes you have to try many different types of medication before you find the right one, or mix to fit your needs.  She talked about the several different medications that have shown great results with children with Fragile X.  It was good to see the different medicines we have tried with Jackson show up on the list and was really interesting to see how they are classified and what they are used to treat in Fragile X patients.  I think I said this before, but I had a really hard time in the beginning with starting Jackson on medication and the main reason I was against it was because he can’t tell us how it makes him feel. After going weeks without sleep and going to Chicago in May, I finally agreed that medicine might be what is best for him.  Seeing this presentation also helped eased my feelings.

Jackson has been doing really well on Trazodone, with the exception of waking up at least once in the middle of the night, usually around 2 AM. Unlike before, we are able to get him back to sleep, but only in our bed. He will have nothing to do with his crib.  We are working with our ABA therapists and thinking it is close to upgrade to a big boy bed. We also thought we should hit up or FXS doctor and see if there is an extended release pill in the same family of Trazodone. There is an extended release, but the pill cannot be crushed or dissolved and Jackson can’t swallow pills just yet, so our doctor suggested a different medication in the same family as the Tenex called Clonidine. She thinks it will help with overstimulation.  So we tried Clonidine and started seeing the same negative results we saw with the Tenex.  The head banging increased, he wasn’t his morning self and just seemed like a zombie all day.  It was also difficult to get him to sleep and he was very restless which meant he tossed and turned all night not sleeping at all. So we reported this right away after three days to the doctor.  No more alpha agonists types of medications for Jackson.

We are now trying Seroquel, it is a different family as the Trazodone, but has some of the same mechanics to help with sleep.  Jackson is back to himself during the morning and daytime, which is great.  So far on the sleep front it hasn’t been giving the results that we would like. He has only been on it two nights and both nights it has taken over an hour to get him to sleep.  He is waking up around 11:30 -12, so it isn’t keeping him a sleep and he seems super restless throughout the night.  The doctor said if we do not get good results, we can go back to the low dose of Trazodone. So between the two different new medicines we are going strong on 5 nights of restless and limited sleep. I guess we will see how it goes for the next few nights. I am in dire need of a nap.  I am afraid if I lay down for one I won’t wake up for a week. 

Amazing weekend…

I have had a hard time finding time to blog these days.  I was using my lunch hour to put together posts, but lately we have been really busy at work and I eat lunch at my desk so I am easy target for questions and interruptions.  I guess I need to start taking myself elsewhere with my laptop to give me the time I need.

A few weekends ago Sara and I attended a Fragile X Behavior workshop that the Fragile X Resource Center of Missouri hosted. The president, Diane, put together an amazing panel of guest speakers with strategies from three different perspectives.  It was an all day event and I feel like we learned so much. It also validated that we are on the right path for Jackson.  We left the event with more knowledge, excitement, exhaustion, relief, and a slight overwhelming feeling all at the same time.  It was crazy what information they were able to give in just a day.

The first speaker was Dr. Marcia Braden Ph.D., P.C., a licensed psychologist who has been working with children with Fragile X for 20 years. The second speaker was Mrs. Cindi Rogers, a parent with two adult sons with Fragile X. The third speaker was Dr. Ave Lachiewicz, a physician at Duke Health who specializes in child development and behavioral health.   I must say that all the speakers were truly amazing and I wish I could fold them up and put them in my back pocket.

We started implementing some what we learned right away, one of which was restructuring our environment.  We still have a ways to go and this gives Sara a green light to go shopping at Office Max and the Container Store. Oh boy, I need to hit the Powerball or Mega Millions soon. Dr. Braden showed examples of how restructuring the environment can make a world of difference throughout her presentation. Restructuring the environment can be much easier than trying to change the behavior. Cindi Rogers showed how she incorporated this and how her sons excelled with this.  She shared a story about one of her sons who like to clear things off tables or shelves by just swiping his arm, with one swoop and everything is on floor.  That sounds super familiar in our household for sure. The area of obsession for her son at the time was the family video library, which back then consisted of a bunch of VHS tapes. Cindi took all their movies and put them in a closet and called it the treasure chest (I think that is what she called it), which she used as rewards for the boys. One of the areas Sara went for right away was Jackson’s books.  He has so many children’s books, he loves to flip through the pages, sometimes he likes us to read them, but his favorite thing is to clear the shelf completely and then take the book and put it behind the couch. I am not sure why this is fun, I am sure the reaction to this was the start of the obsession. Maybe it is the sound of to book sliding on the wall, but he will clear his entire shelf off and will do his best to fit them between the couch and wall, no matter how thick the book. Our couch downstairs has a high back and is against the wall, most thin books are easy to push down, but the bigger books do not fit.  This was causing Jackson to get frustrated, which lead to a more undesired behavior.  So Sara moved all the books into a cabinet, we still read them to him, he just has to tell us when he wants one and we can easily work this into a reward system.

Another area Cindi has mastered the art of visual schedules for her boys and because of this they are very independent. We are already organized and we started taking pictures of Jackson’s toys, snacks, and drinks several months ago after attending Touch Point.  Seeing how to put a picture schedule work through Cindi’s examples and home videos was so helpful. I think with Sara’s mad crazy organizational skills and my technical computer skills we will be able to master the techniques and mold them into our own.

In Dr. Braden’s session she talked about various behaviors and analyzing them.  Some of her session was a recap for us when we went to the parent training at Touch Point. The ABC’s of behavior was something Touch Point drilled into us over the two weeks we were there. It is crazy how you tend to forget about that as time goes on. We have a long way to go on developing a behavior plan for Jackson and it is something we work on every day. We asked Dr. Braden about Jackson’s head banging and for the first time we didn’t hear, hmmm…I am not sure what to tell you.  She asked us specifically when, what, why, who is he around.  We had answers for all of the questions and with that she gave us a suggestion that we are trying and it has helped already.  Jackson likes for Sara to give him all of her attention, when she is not giving him that attention it will trigger some head bang.  So her suggestion is for Sara to give Jackson her undivided attention for a full hour, consistently for a few weeks.  Then start incorporating conversation with someone else within that hour, start off with a few words, then back to Jackson until the hour is up eventually working on redirecting the attention for longer periods of time.  She also suggested working with our OT more to find out what sensory need he might be seeking.  Sara has already talked with our OT and they have been working on finding something for this, so I am sure more to follow. Deep compression on his neck and shoulders seem to be working well so far. Jackson does like to rough and tumble with me on the floor; I kind of tip him slightly upside down with his head on the floor that might be giving him giving him that sensory need he is seeking.
 That same weekend on Sunday we went to an annual FX BBQ at one of the FX families’ house. It was wonderful to see all the kids and play with Jackson.  There was a pool and a swing, so he was happy.  I made new friends with some of the kids. It was really good to talk to some of the families who were at the workshop.  Some of the parents keep telling us that things will get easier as Jackson get’s older. I don’t feel like we have it that hard to be honest, but I guess that is easy for me to say since I go to work and Sara is home with Jackson all day.