A few days away

(Note: I typed this up two weeks ago, so I am late in getting it posted.  My next blog post you will understand why.)

So when I last wrote I was mad at myself for not taking time to write and give myself the relief I need.  My blog is not only funny stories of my families’ day-to-day life, or informational for those who want to learn about Fragile X syndrome, but it is a huge stress release for me.  It is a lot like a journal where I can be myself and not care if anyone is judging me.  Hell…does anyone even read this?   LOL!

Any hew… when I last wrote I mentioned we were back on the path of finding a new house to call home.  I am so glad we walked away from the money pit house because not only did we save ourselves from falling into major debt perhaps keeping the money pit from sinking, but it gave us the opportunity to find something even better.   You know…a house that didn’t need major updates in every room, a house that has hardwood floors, a house with a yard that doesn’t slope, a house that doesn’t have rodents living in the attic, a house that really doesn’t need much done but maybe a few coats of paint.   We could see it in our minds…even amidst thinking we had already stumbled across it and finding so many disappointing problems. And then there she was...a bigger, gorgeous, two story home.  Not only did we fall in love with it, but we put an offer on it, got a contract, and close on it at the end of the week.  There are some rooms that need to be painted, we needed a few appliances, some carpet needs to be replaced, oh…and it needs a fence, but it is our dream house.  It has everything we wanted and more.  Sara gets her main floor laundry and walk in closet (which is almost as big as current bedroom).  Jackson gets a new bedroom and even his own therapy/play area.  I get a huge deck and a man cave.  It is perfect and I can hardly wait for Friday to get here.  The last few weeks have been busy with packing, selecting paint colors, and flooring.  The next few weeks will be more packing, cleaning the new house, and painting walls.  The basement is finished in wall to wall 1975 grayish wood paneling.  I promise to post before and after pictures of it all.

New house aside… Jackson has been on two different medicines since the conference.  The divided dose of Clonidine didn’t seem to be working well, when it wore off Jackson was bouncing off the walls.  EBK suggested trying Tenex again, which I was really leery because the last time it did not go too well.  Similar result on take 2, Jackson was not himself at all and the head banging got really bad.  School was seeing an increase in hair pulling and we were seeing that at home too.  Jackson also smashed one of those long dorm wall mirrors with his head at school.  Luckily it did not cut him or hurt any of the other kids; none of the pieces of mirror fell to the ground they stayed attached to the cardboard backing.  So for the last two weeks he has been on a Clonidine patch.  I don’t know if it is too early to tell, but Jackson is definitely himself.  Laughing at farts and wanting to eat all the time.  The head banging isn’t completely gone, but not a frequent problem and is used in an “I am not getting my way” function.  The hair pulling… again something that Is not completely gone, but is being used when trying to get out of something.  

Medicine aside, Jackson is doing really well in speech.  Every day he is making more sounds.  Like most typical 1 and half year olds he reverts to pointing and grunting, when in doubt reverts to finger gagging, but he is working really hard with using his words.  Jackson’s speech therapist is trying hard to help us get a grant proloqo2go for our iPad.  We are hoping to get a grant for it because it is really expensive.  If Jackson points and grunts, you can ask him to use his words and he tries really hard to say it and sign at the same time.  I call that major progress.

Since I brought up the iPad…Jackson’s favorite thing to do on the iPad is watching YouTube videos of people mowing their yards or vacuuming their houses.  I have actually learned a lot about cutting the grass and what our next vacuum purchase should be.   It is also very scary that people let their 2 and 3 years olds cut grass with a lawn mower.  WTF people?  Then there are the three videos of songs Sara and I are getting to know by heart which are “We are young” by fun. (the actual video by the group), “Big Green Tractor” by Jason Aldean (a video of a little boy driving around a JohnDeer), and my personal favorite “Call me maybe” by Carly Rae Jespen (a video dubbed by Missy Franklin and the USA Olympic swim team).  I always had said if my kid loves the big purple dinosaur I will shoot myself, so I will settle for these pop songs for now.  LOL!

Hello blog, remember me…

I want to write on my blog as much as possible, believe me I do.  I wish I could find the time, but it is so difficult. I don’t know how the blogs I follow do it, some of which have more than one child with Fragile X.  These moms are truly amazing and I feel like I truly know them and their families, even though we have never met. I want to thank all the friends and family who follow and read my blog; I didn't realize how many people enjoy our family stories.

So much as happened since I last wrote I don’t even know where to start.  We had the 6^th annual Fragile, Not Broken Walk for Knowledge in June.  Even though the walk fell on the same weekend as the Komen Race for a Cure, there was still a big turnout.  So many of our friends and family came out with us and walked in support of Jackson.  I feel like I can’t thank those who participated and donated enough, it means so much to me.  I feel bad that I haven’t had a chance to individually thank everyone.  Jackson was all smiles all day, helps that his nephews were there.  I hope that our team grows every year.

Team Jackson 2012

Sara and I have been trying to find a house since April in the Parkway West district.  We found a house that we loved spite the fact it needed a lot of updates and got an accepted contract, but after the inspection revealed a multitude of problems we had to walk away.  Honestly I am not sure which was the last straw as the list grew, maybe it was the massive leaking basement wall after a slight rainfall or the mice family in the attic, but our inspector found 42 items that needed to be repaired.  Some of those items included more than one item, like the leaking faucets in all 3 bathrooms.  The good news is we didn’t buy the money pit; the bad news is we really wanted the house.  Two weeks…  We had called Parkway West when had our initial accepted contract to get the balling rolling before we even moved.  I think the icing on the cake of heartbreak for the horrible inspection was the call we got from Parkway West about adding services to Jackson’s current IEP.   They were really shocked at the limited services he was receiving at Northwest, they were specifically floored that Jackson was not receiving any speech at all.  Sara told them we were paying privately, to which Parkway responded that we shouldn’t have to pay privately, the school should be providing that.  Even though the house fell through it only reassured us that making the move is in Jackson’s best interest.  So the day we walked away from the contract on the money pit house, we started looking again.  It is so exhausting going from work to looking at multiple houses in one night.  We are fortunate to be able to drop Jackson off at Sara’s moms on the way and pick him up after.  Now if we can just find a house we both like again…we will be set. 

Catching a wave

Having fun in the ocean

House hunting set aside we traveled as a family to Miami for the International Fragile X Conference.  It was our first conference since Jackson’s diagnosis.  We also tried to get a little bit of family vacation while we were there by visiting a beach.  The hardest part of the trip for all of us was the plane ride there and back.  Jackson doesn’t sit still for a long period of time ever, so to have to sit still for 3 hour flights just forget about it.  We tried medicine on the way there, then upping the dosage on the way back.  We had his favorite snacks and activities, but nothing seemed to calm him.  We had a lot of hair pulling, a lot of kicking the seat in front, and a lot slamming into the back of his seat.  Aside from that, the trip was great.   I was warned about Miami’s humid weather, but coming from St. Louis with 104 temps at 90% humidity I didn’t even notice.  We stayed at the hotel where the conference was held, it was walking distance from a mall with a ton of eateries.  We got some great pictures at the Hard Rock Cafe, ate at Bubba Gump Shrimp, and the hotel food itself was amazing.  Jackson was a flirt everywhere we went and his favorite spot was the hotel pool.

Ham'n it for the camera

The conference itself was amazing. They offered childcare which was great because there were so many sessions to attend.  Sara and I divided and conquered, trying to go to as many sessions as we could.  It is overwhelming the amount of information they pack into these sessions.  I went to a clinical session where I was so lost from start to finish.  Sara and I both attended Hand-On Hyperarousal Workshop that was led by Mouse and Tracy.  It was by far my favorite session because we got to experience how it feels to be hyperaroused and we can teach others what it feels like by making them participate in this small little exercise.  I thought I knew how hard it is for my little man to function in this world, but I was completely blown away and to be honest had no real clue.  The common word used in the majority of the sessions I attended was “Hyperarousal”.  Even though the information at times felt overwhelming, it was also good to be reassured that we are on the right path in helping Jackson succeed.  Since Jackson is still young we did miss the big luncheon and dinner banquet which would have given us more opportunity to talk to other families, but I am glad we chose to have some family time too.  Sara did get to go to the Mission to Lars viewing while I put Jackson to bed, I was a little bummed that I didn’t get to see that.  We were able to meet up with Sara’s grandpa and grandma for lunch.  The visit seemed too short, but they were able to see Jackson.  Sara’s grandma brought Jackson a little goodie bag with yummy treats, cute sunglasses, and bubbles.  Jackson literally bounced the entire time they visited.  I can’t remember if Jackson was walking yet the last time they were able to see him. 

Since we have been home from Miami we have been busy house hunting.  Saturday we had a showing of our house and went to the Fragile X BBQ at the Howards.  They are so nice to open their home to everyone and the food spread is always amazing.  Even though Jackson takes up the bulk of our time at events, we find time to take turns and mingle with the other parents.  It is nice to be around friends who are or have been in shoes similar to ours.  Plus there is a pool and Jackson loves pool time.  Jackson pulled on one of the little girls’ hair in the pool and she handled it so well.  I also have a BBF every time I see her.  She loves to ask many questions and has such a great imagination, I really enjoy our talks.  She even lost a tooth which was super exciting; I hope the tooth fairy visited her.   We wish could have stayed longer and visited more, but we didn’t want to push Jackson too far.  I think he may have had too much pool water because on the way home he made himself sick.  Jackson was getting so much better at not sticking his fingers down this throat, but this time we couldn’t distract him away from it at all.  Sara believes he had an upset stomach.  When we got home I pulled the hose around to clean him and his car seat off, he of course loved it.  Then I took him upstairs for a bath while Sara finished cleaning the car seat.  After his bath, we switched and I finished cleaning out the car.  Did I mention that after he got sick he starting clapping and smearing his stomach contents on the window?  I think most parents would be screaming at the top of their lungs over this, but all I could do is laugh at this point.  I will admit I was not laughing when he was making himself sick on the way home, mostly because it makes me want to get sick.   The finger thing has always got to me.  I sure do miss Billy Mays, but Oxi-clean is by far a life saver for times like this.   Next year we will be living much closer to everyone so we will be able to stay longer and the drive home won’t be as far, less time for incidents like this. 

Yesterday we stayed home.  There were a few open houses we thought about seeing, but I didn’t feel like leaving the house for anything.  We took advantage of the no tax weekend and bought a new MAC because ours is on its last leg.   Sara also bought a wireless printer so I got to play tech geek in the afternoon getting it all setup.   We took a much needed family nap and after dinner went for snow cones.  I should feel rested today, but I am not quite there yet.  I think once we are moved into our new home I will be able to get caught up.  Come on new home.. Wherefore art though…  

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 2^nd half of the 1^st 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 2^nd 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. 

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!

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. 

A lovely day for the playground

Mama went to the gym this morning. While she was gone, Jackson and I went to the park to play. There wasn't very many other children at the park this morning, so we got to go straight to the swings. The playground only has two baby/toddler swings and two other swings , so it is rare that any of them are free. Jackson loves being on the swings and it helps with his sensory needs. The good thing about the playground swings unlike his swing we have at home is that it doesn't have a hard plastic back. Jackson likes to slam his head into the back of his swing at home. I think his head banging is another sensory need, but no doctor or therapist has been able to figure out what that need is or why he does it. They also can't help us figure out how to stop it, but that is another topic to post later. Jackson was laughing and having a great time on the swing.  Soon other kids came over to swing and then there was a small line for the baby swings. This always gives me anxiety because the other parents are trying to tell their children they have to wait all the while giving you a dirty look.  I completely believe in the take turn system, so after a few more minutes I grabbed Jackson up and we went over to the slides.  Surprisingly he was OK with that, even though he was fussing a bit when getting him out of the swing. His fuss was nothing like the 4 maybe 5 year old who was there with her texting father who kept giving me the look.  Although the look could have also been him trying to figure out if I am a dad or a mom, I get that a lot.  

The playground we go to is really nice; it has a bigger kid slide system and a smaller kid system. Jackson likes them both. We started off with the little kid station. Jackson is getting better at the steps and will go up now all by himself, although after the first step he is on his hands and knees crawling up them.  There wasn't any children on the smaller play set at this time, so that was OK. He went up and down a few times before he was ready for the bigger slide system. Over at the big kid station was a little boy that seemed to be same age as Jackson named Henry. His dad was helping climb up this cool plastic wall, something Jackson doesn't even notice and goes straight to the stairs. The big kid station makes me nervous because it is twice the height of the little kid station and it has a bunch of big openings. So naturally I am right behind Jackson as he goes up the stairs. The big kids are not mindful of the toddlers as they run and jump around or even over them. When we get to the top Henry is up there too and was cute to watch the two boys carefully hold onto the rails as they go over the wobbly bridge. Henry is saying hi repeatedly to Jackson and Jackson is just smiling from ear to ear at him doing his Fragile X sound "Eeeennnnwwww". Jackson is about 3 inches taller than Henry, so it is hard for me to tell if they are both around the same age. Both the boys loved the wobbly bridge, going back and forth. Henry's dad asked me how old my little one was.  I told him Jackson was 2. Henry’s dad got all excited, Henry’s 2 as well.  He also continued stating he can’t believe how fast it does. At times I do feel like it has gone fast, but at other times I feel like it hasn’t. We are both enjoying watching our little toddlers play. Henry finds the slide he likes; Jackson opts for the stairs to a different slide. Then Jackson bolts off back to the little play set. Henry is close behind. Yay, a toddler friend for the day.

Back over at the little play set is two pre-teen girls. They are exchanging cell phone numbers so they can text each other.  One of the little girls says to me, your baby is so cute.  I say thank you to her as she and her texting buddy head off elsewhere. Both Jackson and Henry are face to face again up on the little play set. Jackson is getting really close, as he knows no boundaries. I tell him he is too close and Henry turns around to look at me.  I didn’t see it, but I guess Jackson maybe stepped forward at the same time and the two bumped heads.  Henry says, ouch… and starts rubbing his head, kind of whimpering a little bit.  I said, Oh… did you guys bump heads and Henry nodded as he said yes.  Then Henry turned to Jackson and said he was sorry… still rubbing his little head.  Jackson, well he is just smiling as though nothing happened. He is also flapping his hands in excitement while saying “Eeeennnnwww”. Henry’s dad said, rub it off buddy… and to that he was fine.  The two went up and down a few more times and then Henry and his dad left.  Jackson didn’t notice them leave, but I thought it was great that he made a connection with someone his age and that the dad didn’t ask any questions or pass any judgments.  So to Henry’s dad, thank you. I hope to encounter more parents like you in our future endeavors at the playground.

It was getting HOT and Jackson was still amped up. He noticed the swings again, but they were full and it was time to go. Jackson wanted those swings, so he didn’t like that I was taking him away from that. I scooped him up and he was trying to pull off my hat. When we got to car he was getting upset and would not go in his car seat. Luckily I had some snacks and juice ready. After several attempts and singing farmer and dell over and over, I finally got him buckled in.  After some juice and Cheerios, I figured we were ready to get going. Jackson was still signing drink in the back seat, so I reached back to give him more. Then he started to squeeze the box, juice everywhere.  I forgot the darn juice box holder. I tell him hands to himself, but he is still trying to squeeze the box and laugh. I get almost out of the parking lot when the fingers down the throat start. I try giving him more Cheerios, but he is just tossing them, laughing, and sticking his fingers down the throat. So I pull into the next lot, get out of the car, and walk around to him. He signs he wants drink, so I give him some more. Now he seems better so I start driving again. I have to keep giving him Cheerios, but no more fingers.  I am few stop lights from home and my Cheerio stash is now gone..  Jackson starts sticking his fingers down his throat again. The therapists say to ignore this behavior, but it is so hard to because he will keep doing it until his vomits.  Vomit in car seat is not fun, but I driving the car so not much I can do. Sure enough Jackson vomits and he is laughing.  So he knows this is an undesired behavior. I try not to show any emotion and keep ignoring. We are two stop lights away, this is where Jackson will nod off on the drive home. Sure enough I look back there and his eyes are getting heaving.  When Jackson falls asleep in the car, doesn’t matter for how long…he will not take a nap.  No nap means no break for Mama or Nana and for this trip means no time to clean up messy vomit in car.  So I am pulling on his leg and singing at the top of my lungs to keep him away, he just smiles as he closes his eyes. We get home; vomit is not too bad in the car, mostly on his shorts and a little on his seat.  I pick him up and he rests his head on my shoulder.  So hard to be upset when he is cuddly because that is a rare occasion in itself.  We get inside and the doggies are going crazy…I get them outside. Take Jackson straight to the bathroom to clean up. Most of the vomit is on his shorts and socks, nothing on his shirt, but I took everything off anyway. Clean him all up, take him to his room, change diaper, and put on some shorts.  Tried to rock him a bit, but he wasn’t having it. Tried to lay him in the crib, he is not having that either. Back to rocking, this time he is OK with it and finally drifts off and I am able to put him the crib. I get everything cleaned up of his clothes and in the car, let the doggies back in, Mama pulls into garage and Jackson stayed asleep, but not for long…  I scoop him up and take him in our room, he cuddles for a little bit and drifts off for an hour, giving Mama some time to take a shower.  I stayed with him as he napped and gave myself a little rest time too.  He is so freaking adorable when he sleeps. 

Mama and Nana have a funeral, dinner date, and birthday party to go to later and Jackson is staying the night at grandma Sinky’s. Oye vey what a day already…