So Busy

We have been so busy the last few weeks and weekends that I have not had any time to share our exciting adventures.  So I will try to be brief to get everyone caught up with our family.  LOL!

Over the memorial holiday we traveled to Chicago to see Jackson’s fragile X doctor, Dr. Elizabeth Berry-Kravis.  We left on Monday for the Tuesday appointment.  We only stayed one night and drove back, we are brave.  Jackson did really well; it took us around 6 ½ hours there and about the same back. I think trip took more of a toll on us.  The appointment went really well.  I entertained Jackson while Sara asked as many questions as one could ask.  Dr. Kravis is such an amazing woman; I am not sure how she fits all that information in her brain.  She was very impressed with Jackson’s progress.  Last year when we visited Jackson only had about 3 signs for communication, now he has communication oh plenty.  The room we were in had a computer that Jackson was obsessed with.  Dr. Kravis said that all her FX patients love the computer and felt he couldn’t break it.  He somehow changed the video to display sideways using nothing but keystrokes.  I might be a computer geek, but this computers system settings were locked down, so without knowing what in what sequence the keys he pushed I could not get the display back to normal before our appointment was over.   Dr. Kravis wants to try Jackson on a medicine during the day to help with hyper activity and focus.  She also was impressed with the amount of energy he had during the time we were in that room.  Sara is going to brave the medication next week while the two of them are both home for two weeks.

Watch out Bill Gates!

The following weekend we went to a “mommies like us” outing and we had an open house.  It was nice to meet other families like ours with two mommies.  It was hard for us to get to know the mommies as Jackson is a busy toddler.  I brought my camera to take pictures of the other families, but didn't a get a chance.  After lunch we dropped Jackson off for a nap at grandmas, and then Sara and I did a 24 hours blitz deep cleaning to our house making it all sparkly for the whopping two couples who came and took a look see.  The only feedback we got from the agent who was at our house, which by the way is not our actual agent, was one couple really liked it and was going to speak with their agent; the other couple was concerned about the roots for the tree in the front yard.  We have not heard from our actual agent since our open house, so my guess is she did not follow up with the agent of the couple that said they liked it.  So in the 3 months our house has been on the market we have only had 3 lookers.  Either way I am still very positive that someone will fall in love with our house and put an offer on it soon.

Every weekend Sara and I are going to as many open houses as we can.  We switched buyers’ agents recently and our new agent has been very helpful.  We have gone to a few houses outside of open houses and taken a 2^nd look at two houses we are really interested in.  Both houses our listed outside our budget, one of which has come down in price, just not down enough…  Any spare time we have at home we have been online looking at houses.  Pretty much that is where our spare time has gone too.

Sara started working at Howard Park Center a few weeks ago.  Jackson is also attending school there over the summer.  She loves her job and Jackson is doing well at school.  Last week he had a few hair pulling incidents, we are really trying to find the best way to manage this.  We asked Dr. Kravis about it when were in Chicago and she said a behavior analyst would be able to advise us best.  This is the one behavior that can’t be ignored as it harms others.  We keep trying multiple avenues, I hope we find a working one soon.

This past weekend we walked for one of Sara’s high school classmate’s daughter at the “Seize the Day Walk”.  The event was in Kirkwood at the train station.  Jackson got to see a train go by, which was probably his favorite part of the day.  They had a lot of silent auction items available, a bubble bus, food, and beverages.   The walk started early, we were there just before 7 AM.  We finished the walk just after 8 AM and it was already very hot.  Jackson lasted till about 8:30 AM before he was ready to go.  

Watching the train

That is not Thomas Na-na!

We stopped at his favorite store on the way home, Target.  We got home in time for lunch and a nap, and we all took part in the nap.  It has become a weekend family tradition, if Jackson naps, we all nap.  After then nap, Jackson and I vacuumed that house.  We are using this as a reward for after naptime.  I was able to a snapshot of him helping. 

 My little helper

Sara and I had a date night for the evening.  We went to Elephant Bar in West County.  I have an onion allergy so it was difficult for me to find a menu item, we didn’t realize that before booking the reservations.  We ordered the lettuce wraps for an appetizer, but it had red, white, and green onion throughout.  Our waiter was nowhere to be found after the plate was dropped off, so I told Sara to go ahead and enjoy them while I enjoyed my yummy adult beverage.  After dinner, we drove by a house we had on our list to go see, but the backyard was nothing but a huge slope, no level ground at all.  We drove around a little bit more in the area and then stopped at Blockbuster.  Since the evening was falling a little short we grabbed a comedy, Tower Heist.  The movie was hilarious, just what we both needed.

Sunday we both spent time with our dads.  My siblings, sister-in-law, and I took my dad to 66 Roadhouse for brunch.  Because we booked the reservations late, we had an early bunch, but it did not disappoint.  There was plenty of great food.  My sister-in-law is related to the owners, but I didn’t know that before deciding on that location, small world. That did not get us any sort of discounts though.  Sara and Jackson got home shortly after I did.  Jackson was really tired, so we all took a nap before lunch.  We slept 2 ½ hours, wow I guess we all needed that.  Sara vacuumed after lunch while I packed up swimming gear.  I took Jackson over to my parents for a swim so Sara could do some cleaning.  She suggested it before you go thinking I am a bad guy.  Jackson and I had a blast at the pool.  We bought him water wings with a chest belt and within a few minutes he was swimming on his own.  He needs some work on kicking those feet, but by the time we getting to ready to get out of the pool he was starting to get it.  My dad grilled some shrimp and steak.  I ate some before we headed home and it was so yummy, Jackson didn’t really want any part of it and I was still full from our late lunch.  Sara cooked some baked spaghetti and he was ready to eat as soon as we got home. 

Mr. Independent!

Kicking his legs

This coming week we have a lot going on.  Sara is going to a support group on Tuesday night.  We might try to see a few houses.  We also are switching agents, so we have new contracts to sign.  Friday night I have softball with my ladies. Saturday is the 6^th Annual Fragile, Not Broken Walk for Knowledge.  If you haven’t already, it is not too late to register to walk with Team Jackson.   Our team is going to be wearing Cardinals gear.  Go CARDS!  It is a fun family event with games, pony rides, and raffles.  Come visit our team page for more details and read our story: TEAM JACKSON 

Communication oh plenty...

Jackson is so close to making words.  We have even had some babble lately.  The other night we had taco’s for dinner, the boy ate two. After dinner he was babbling up a storm, I guess he needs some seasoned beef to wake up his vocal cords. 

Here are some of his sounds with the words he means:

Ø  Doo-doo-bah = Jackson, that is how he says his full name (accompanied by tapping his hand on his chest)
Ø  Dack = Jack, when you ask him what is his name he sometimes says the above or shortens it.  He also taps on his chest.
Ø  Duck = Duck
Ø  Dat = Hat (accompanied by the sign for hat)
Ø  Ba = Ball (accompanied by the sign for ball) or Balloon
Ø  Bu = Blue (accompanied by the sign for red, we are working on the right sign)
Ø  Pa-pa = Purple
Ø  Pah = Please (accompanied by the sign for please)
Ø  Ra = Red (accompanied by the sign for red). Sometimes he can say red clear as day
Ø  Raba = Red ball
Ø  Bubbas = Bubbles (accompanied by the sign for bubbles)
Ø  Bababas = Banana (he also taps out the syllables)
Ø  Bob = Bob the neighbors name. 
Ø  Ty Ty = Short for Tyler our 12 year old Chihuahua
Ø  Moo = Short for Mookie our 13 year old Border Collie mix
Ø  Doug = Dog (accompanied by the sign for dog)
Ø  Dah  (Sound made at a high pitch level) = Drink (accompanied by the sign for drink) also used for that and yes.
Ø  Dada = Nana (accompanied by the sign we made up for Nana, which is the sign for hat)
Ø  BaBa = Mama (accompanied by the sign for Mom)
Ø  I-pa = iPad
Ø  Oh-pa = Open (accompanied by the sign for open)
Ø  Ah-pa = Grandpa (Sara’s dad, sometimes accompanied by the sign for grandpa)
Ø  Weebles = Weebles, his toy Weebles tree house.  He has said this a few times for me.
Ø  Ah-da = All Done! (accompanied by the sign for all done) He has clearly said all done a few times.
Ø  Eh or Keh = Means just about anything, but uses mostly to get our attention, sometimes accompanied with the sign for what he wants, mostly accompanied by him sticking his fingers down his throat.

Jackson’s sign language has improved so much, but he still has some trouble.  He does obsess over some items which he is completely accurate on like cracker, cookie, drink, swing, and vacuum.  He will follow those with the sign for more or please. Jackson can sign a few colors; red and orange are right on the money, but he knows blue, green, purple, and yellow.  Jackson is really excited to do his colors with you and he will point out colors on objects without prompting.  I can ask him what is Nana’s favorite color and he will gladly sign orange with a huge smile on this face.  He will tell you his favorite color is blue and he points to something green for Mama’s favorite color.  

Jackson also loves to sing with his sign language.  His favorite two songs are “Twinkle, Twinkle, Little Star” and “The Wheels on the Bus”.  Sometimes Jackson gets frustrated when we can’t figure out what he is saying or signing, but he has gotten much better at guiding us to what he wants.  Then there is the pantry which he will stand at, point too, sign and say open, guide you to, and bang his head on…now he is going for the knob.  He knows we know what he wants, but there are still rules and we aren’t going to let him eat the day way.  Seriously it is amazing this kid hasn’t turned into a cheez-it.   Jackson is close to figuring out how to open doors…  Man…are we are in for a real treat when he does, or is it he will be in for a real treat?!? You choose.. HA! 

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. 

Bubbaahs

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.  

Ah-Da…

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.