Rewedding….

Sara and I were married in 2006 in our hometown of St. Louis, Missouri.  On our 5th anniversary I wrote about our engagement and wedding and you can read story that here: http://frageelayx.blogspot.com/2011/09/happy-anniversary.html.  Here is a picture from our 5th anniversary.  We found an amazing bed and breakfast near St. Louis in Clarksville, Overlook Farms.  It was an amazing overnight stay and a perfect way to celebrate 5 years together.

Unfortunately in 2006 the only place we could get legally married in the US was Massachusetts and you had to reside there in order to obtain/maintain a legal marriage.  Neither of us wanted to move away from our families, so we had a little ceremony in front of our family and closest friend followed by a celebration a.k.a. reception.  It was an amazing day that wasn’t legal, but that didn’t matter to us as long as we could make a life commitment to each other.  It was the greatest day of my life.

Shortly after we were married we bought our first house in 2007.  We were approved for a loan with Sara’s amazing credit and both our incomes, that wasn’t as hard as we thought it would be.  Once we were settled in we started planning for our 1st baby.  After 1 year and 5 tries Sara got pregnant; it was very emotional roller coaster.  I learned a lot of things about getting pregnant; it’s not that easy as one may think. We welcomed Jackson into our world in 2009, the second greatest day of my life.  

Unlike hetero couples who get married, have children, and automatically get rights…we had to hire an attorney to get all the legal documents to protect us if something were to happen to one or both of us.  Power of attorney, living will, name change, adoption…the list goes on. Since same-sex marriage is not recognized and we have all the “legal” paper work, a judge can still rule not in our favor or best interest if something were to happen to one of us.  Jackson is not biologically mine so we had to follow the Missouri laws on adoption.  It was another emotional roller coaster in addition to the costs of getting pregnant and attorney fees, but on Aug. 18^th, 2010 I became Jackson’s second parent making it the third greatest day of my life. 

             

The US has come a long way since 2006 with 21 32 states legalizing same-sex marriage, but there is still a long way to go.  Missouri is now recognizing same-sex marriage established in other jurisdictions, but doesn’t issue marriages licenses to same-sex couples. In June 2013, the Supreme Court struck down section 3 of the Defense of Marriage Act (DOMA) and required federal government to treat legally married same-sex couples on an equal basis with heterosexual married couples.  The economic impact of this ruling is huge for our family.  I still have state taxes coming out of my paycheck on health insurance that my hetero co-workers do not have to pay for their spouses.  It’s work in progress.

Wikipedia provides great resources if you are interested to learn more about marriage rights and benefits: http://en.wikipedia.org/wiki/Rights_and_responsibilities_of_marriages_in_the_United_States  and same-sex marriage: http://en.wikipedia.org/wiki/Same-sex_marriage_in_the_United_States. 

Fast forward to July 2014….our family traveled to Orange County, California for the National Fragile X Conference.   Sara’s parents traveled with us to also attend the conference.  Sara’s brother and sister-in-law live in Los Angeles so as an added bonus we were so lucky to spend some time with them while there.  The icing on the cake while in Orange County Sara and I got legally married.  I married my wife twice.  It was crazy emotional just like the first time.  Yup...you guessed it...the forth greatest day of my life. 

Instead of a reception we headed to the beach, not a bad substitute.  When we arrived at the hotel to get ready for the beach we were greeted in the hotel lobby by a friend of whom we have become very close with from a club we never knew we wanted to join, the great Holly Usrey-Roos.  She greeted us with a huge hug and surprised us with flowers.  It is very comforting to be accepted in our new found family in the World of Fragile X and we have been so lucky to meet so many amazing people in this journey.  I don’t even have the words to explain it, but it means the world to me and my family to be embraced whole heartedly.

Even though our honeymoon the second time around was attending a conference hosted by the National Fragile X foundation and we only saw the sun a few times while in California, I wouldn’t have traded it.  We continue to learn more everyday Living the Fragile X way. The conferences and workshops we attend provide us these great tools to help navigate through each day.  Through our Community Support Network we continue to meet other families like ours who have been there, done that, going thru that, and then some.  So far in the 3 years since Jackson’s diagnosis I have made so many friends who are more like family and for that I am eternally grateful.    

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…  

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! 

Sweet joy, I love my boy..

We put our house up on the market the first week of April.  We love our house, but the school district is not suited for Jackson’s needs.  Otherwise we would live there forever as it is located in the middle of both our parents.  Last week we lowered our price because we haven’t had one showing.  An hour after lowering the price we got our first bite and someone came to look at our beautiful home.  We had less than 24 hours to make our house perfect and sparkley, as everyone knows that hardest part of homeownership with a toddler is keeping it spick and span.  I rushed home from work on Thursday and started right away.   Jackson is at grandma’s house until Sara is off work, so I didn’t have much solo time.  I tried to get as many of the jobs that only I can do completed when Sara and Jackson got home.  Sara had already cleaned the kitchen earlier that day and thought it was best for us to go out to dinner.   I was craving BBQ so we headed to Bandanas.

  

Jackson was so good at dinner.  He loves going out in public and we usually don’t have any issues when food is involved, that is as long as we warn our waiting service about his awesome ability to clear the table.  Since our mind was racing on what we needed to get completed at the house, we totally forgot to warn our waitress.  When she brought our drinks to the table Sara was trying to get the words out, but it was too late.  As the waitress went to set Jackson’s milk down he hit it right out of her hand.  It was totally like one of those slow motion scenes in the movies where the lead character is saying, “Nnnnnnnoooooooooo”.  Somehow Sara caught the cup in midflight. 

The waitress said, “Nice catch” as we all laughed. 

Sara was then able to say, “Sorry, I meant to warn you about his anxiety and he likes to grab and swipe things”.

The waitress responded, “No problem, let me grab a warsh rag”.  I was impressed with her reaction to everything as thought it was no big deal.  Oh and it we were at Bandanas so southern slang is expected.

When our food arrived our waitress made sure to keep her distance and did not deliver any of the food over Jackson’s head.  Jackson ate off our plates like a champ, so we had no left overs for once.  He loves BBQ pork, french fries, and fried okra.  Yup, he is my son.

   

Sara stayed up late to do some cleaning and organizing for the next day.  Jackson had ABA therapy, which allotted her extra time. Jackson also had a speech evaluation and Sara said it went really well.  The speech therapist says Jackson has lots of words him, so that is very exciting news.

The house showing on Friday was right at the time I would typically get home from work, so we hung out at Sara’s parents before my early softball game.  Sara brought Jackson to the game.  My team was thrilled to see him even though he was on the move the entire time.  He enjoyed running in the outfield, he even jumped on 3^rd base.  I was surprised he lasted as long as he did there with no playground.  Our game only lasted about 30 minutes though sad to say.  We got short gamed.   This year the team decided we needed to join a more competitive league and we definitely found one.  We are currently 1 and 3; every game has been close within a few runs with the exception of this last one.  Julz, one of my teammates, joked, “Why is it we got old we so decided to play more competitive, shouldn’t it be the other way around… I mean really, wasn’t our team name a few years ago A.A.R.P.?”

Jackson made friends with all the ladies.  Jackson played a game of boo with my friend, Michelle a.k.a Double D (which stands for daisy dukes), for at least 15 minutes.  She was in love with his contagious laugh.  Sara and Jackson left shortly after our game so I could spend some time with my team and have some beers.  I love my lady time, I have played with these gals for just over 10 years.  My team name is “Here for Beer” which is suiting. Carol had me laughing so hard that the next morning I could barely sit up as though I did a million stomach crunches the night before.  Every season we pick up where we left off the year before, except our bats are rusty the first few games.

Saturday Sara, Jackson, and I went to reunion BBQ with my college softball team.  Sara and I were both really worried about Jackson not engaging with the other kids, or worse pulling their hair.  When we first arrived I warned all the parents that Jackson might pull their kids hair.  To my surprise all the moms were accepting.  Arnie even responded, “They are kids... Mine will probably pull back”.  The good news is we didn’t have to pry Jackson off any of the pretty little girls with long blonde hair, there were 4 of them.  Jackson had an absolute blast.  He was mostly focused on the playground and his new game of taking his shoes off at the top of the slide and letting them go down first. Only 4 of my teammates showed up with their families, a few had to cancel at the last minute.  Teri came to down from Kansas City and I was glad because we graduated together and haven’t seen her since.  We had plenty of food to go around and plenty of good conversation.  It is funny that after over 10 years everyone is exactly the same way I remember them. 

Teri, Karen (V-Dog), Andie, Me, Jami (Arnie)

Sara and I divided and conquered taking turns chasing Jackson around.  He is one busy child.  I was worried about him getting overheated.  After everyone ate and bellies were settled, Arnie and her husband filled up a bucket/tote/plastic-ma-bob-thing (I don’t know what the heck you call it plus it was pink, I don’t own anything pink) full of water. Then they let all the kids pick out a water blaster and all of them participated in getting soaked.  Jackson was so excited, he needed assistance with his blaster and he was making his fragile x sound, “Eennnneeeewwwww”.  I was worried the other kids would stare at him or ask why he was making that noise, but they didn’t even flinch.  Everyone near the water bucket was fair game, so I got soaked myself.  All of the kids were having so much fun, I can still hear them all laughing.  Jackson didn’t squirt any of the other kids, he just liked getting squirted.  After the water game Jackson was getting fussy, so we left early to avoid any major melt downs.   Just before leaving the girls decided that we were going to try to get together more often. We even discussed taking a road trip to Kansas City for old time sake and to visit with Teri.

Arnie and I are getting soaked as we help the kids.

Mmmmm....CORN

Sunday was another great day.  Sara’s brother is in town from L.A. so her family planned a dinner.  Jackson ate corn from the cob and even did well holding it by himself.  We got real excited for him; he loves that positive attention although it doesn’t last long before he is throwing the cob across the table.  We also got to watch SNL with Mick Jagger.  It is always great to catch up with Sara’s brother, especially hearing how his shows are going.  How many Elvis Clowns do you know?  The shows are entertaining to say the least.

So even though we had an extremely busy weekend it was amazing and Jackson did so well through all of it.  I am so over joyed even though our showing didn’t make us an offer.   

When Fragile X is hard

I always try to be positive when talking to others about Fragile X syndrome.  When I share my stories I try to make them funny or put a comical spin on them.  Sometimes though it can be really hard to see things positively or comical.  Jackson has some behaviors that can hurt or drive you completely insane, sometimes both at the same time.  It is really hard sometimes to keep calm and not have a negative reaction.

 

Jackson is a master at pulling hair and he can grab that one spot on your head that makes you drop to your knees.  Sometimes it takes another person to help free his hands because he grabs you with both of them.  If you ask him nicely to stop, he pulls harder.  He also might throw himself to the ground while latched on, or put his feet into you and pushes outward against your body.  He has also grabbed my hair and pulled his head into mine like an extreme head butt.  Sometimes you can see it coming because perhaps he isn’t getting his way, or if you get too close it makes him anxious.  He doesn’t like people to be too close.  Other times the hair pulling seems to come from nowhere.  Maybe he was hurt and you are comforting him, or you are playing with him and he is laughing and having a good time.  When you are public people just stare at you as though they have never seen a child pull hair before.  I try not to worry about those people who appear to be judging us.  It makes you just want to cry either because he pulled too hard, or because you are so tired of having to pull him off.  We have tried to track what triggers him to revert to hair pulling, but sometimes it is very impulsive with no rhyme or reason.  There are days that the hair pulling drives you completely insane making it hard to not yell at him or the person who might be helping you out.  We are at a loss as what to do to keep him from doing it.  The answer is not pulling his hair back for those who are thinking that, although I will admit I have tried that and it did not work.  We will continue to try the suggestions our providers continue to give us.

If Jackson isn’t getting his way he reverts to head banging. This is something he has done since he was around a year and half.  He sometimes sports a bruise on the middle of his forehead.  Our last trip an ER a nurse asked us if someone hits him, she quickly followed that statement with saying that is something they ask everyone.  We have been to the ER a few times in last few years and that is the first time anyone has ever asked that, so it took me a little off guard.  Recently though Jackson has been swatting at or hitting, mostly at us.  This usually happens if you try to redirect the head banging or hair pulling. The swatting is newer and it isn’t that frequent, but I worry about it happening at school.   School says he doesn’t bang his head or swat at anyone, so I guess he saves that all up for us.

Then there are some of the things that drive me insane.  Jackson has the ability to clear things off everything… shelves, tables, and counter tops are a few examples.  Because of this unique ability, if you visit our house you will notice everything is up very high or you just don’t see much in our house.  We do have things, I promise…they are just all put away.  I have had friends tell me not to worry that all kids are like that, but I really don’t think they understand.  When I say clear everything, I mean everything.  If it is within reach it will be swiped off in less than .2 of a second.  We give people heads up of this ability, especially when we go out to eat, but by the time food is ready to come to the table and all seems to be lost our server.  Please all waitresses and waiters please don’t try to server our food over our sons head or stick anything right in front of him.  We had a waitress deliver hot soup right across Jackson and try to hand it to Sara when all she had to do is walk over to Sara’s side of the table and give it straight to her.  Jackson swiped the bowl of soup and it burned his hand, but of course we are the ones left apologizing.  In our house all of Jackson’s books are put away in a cabinet, his toys in bins.  Our bathroom sink only has hand soap on the counter.  Our decorative shelf is empty unless we have a house showing, we even had to remove the individual selves in the middle because he figured out how to lift them up and drop them. 

Jackson also likes to knock things over like chairs, lamps, trash cans, and plants.  You can redirect him away from the tipping object and send him to his preferred activities, but he will go right back to it.  Jackson is an awesome bait and switcher.  We have to put our dining room chairs away until company comes to visit.   The kitchen is locked off with baby gates.  Pillows are not to be on couch, they are to be thrown over banister and down the stairs along with TV remotes, cell phones, or anything that he gets his hands on.  Every door in our house is closed and he is close to figuring out how to open them.  Not looking forward to that day.  Seriously it is super extreme, my son is the Tasmanian Devil and he does these activities with a giggle and a smile.  I grew up watching my siblings and toddlers in my neighborhood; and I don’t recall it ever being this extreme.   So when others say to me,  “Oh he is just a boy or he is just a 3 year old, all 3 year olds are like this..”  I laugh and think to myself, “I dare you to invite us over…”   Most 3 year olds I have encountered in my lifetime even those who have behavior quirks can be explained to why this is not an acceptable behavior and once they experience consequence like a timeout they most of the time they learn not to do that behavior again.  I wish a timeout would work in my house.  Please don’t tell me to spank or discipline my child.  Most of the time the behavior is attention seeking, so even if you give the child a negative response they are still getting what they want which is attention in the first place.  I have gone to a few behavior workshops and a parent training program on autism and autistic like behaviors, I personally think all parents should attend such programs if possible.  If you are going to give me input on how you would handle these behaviors then come take a class or attend a workshop with us.   Now I am sounding like I am ranting and venting, which is not my intention.  What I am trying to say is sometimes it can be so hard.

   

Sara and I attended a Fragile X behavior workshop last year and learned so much from this.  We both felt overwhelmed with information when we left, which is a good thing.  One thing that stuck out is that it is easier to change the environment than it is to change the behavior; however this is easy to forget when the behavior is present. The shelf clearing I mention above, Jackson is not the first fragile x kid with that talent.  We know that fragile X syndrome can exhibit many challenging behaviors, but we really worry about the aggressive behaviors.  The hardest part is figuring out what triggers the behavior because there are so many factors that can cause these behaviors.  Jackson seeks a lot of sensory integration and we give him tons of throughout the day.  Jackson has an indoor swing, a brush for his hands and arms to be tickled (or our hands work as good tickling devices), he also likes to get squeezes and rolled on (I am a human steam roller), he has an indoor trampoline, his chewy tubes are amazing, and he has a rocking horse.  All these things help with all his sensory needs.  I am really looking forward to our trip to Chicago to visit Jackson’s FX doctor over the Memorial Day weekend. We have so much we want to ask, especially now with Jackson’s seizures.  We will also have time to talk about his behaviors and medicines.  I am also looking forward to going to Miami for the FX conference in July.  We are going as a family and there are so many sessions that we can attend.  I am so grateful for these wonderful opportunities to learn and discuss things that can help my son succeed.  No one said parenthood was easy...

Roller coaster part 1

Hello my followers, sorry I have been MIA from sharing our experiences in the blog world.  We have had so much going on and I haven’t been giving myself the opportunity to write.  I have been reading the blogs I follow which truly inspire me.  There are so many wonderful families out there.  It is amazing to me the similar experiences my Fragile X bloggers write about.  Our children are just special, they are exceptional.  I get teary eyed when reading about the accomplishments and obstacles that are overcome, just as I do when watching sport movies with powerful endings. “RUDY, RUDY, RUDY!!!” It just gets me every time…   I feel like I personally know these families from their pictures and stories.  They give me so much hope for my son and his future along with assuring me that we are doing the right thing as parents.  I feel a deep connection with these families even though I have never met most of them.

One of the biggest common topics I read in the FX web ring is how hard sleep is to come by for our kids.   Fragile X parents can relate to these stories of sporadic sleep patterns, or the difficulties in getting our kids to bed.  It’s not that parents of typical children don’t run into problems with putting their kids to bed because I am sure they do, it is just different.  Jackson as a baby was easy to get to bed and for the most part he slept through the night.  He eventually reached an era where he would have a night or two a week with difficultly staying asleep.  I remember walking him up and down the hallway for an hour or two, facing forward so he could see instead of nuzzling his little head into my chest like I was familiar with when my siblings were younger.  As Jackson got older, the sleepless nights started to overtake the sleeping ones.  We tried melatonin and it seemed to help at first, but non-consistently.   Then there was extended release melatonin. Then there were other medicines our FX doctor had us try until we found a good match.  The sleep schedule was Jackson takes his medicine between 7:30 – 8:00 PM and then within 30 minutes we head to our bedroom where Jackson watches Mickey Mouse Club House while laying on me to fall asleep.  Once he falls asleep we then transfer him to his bed.  This is one of the main reasons I haven’t posted a blog since December because this has overtaken my nightly me time.  

Eventually we will incorporate a visual sleep schedule for Jackson so we can take me and our bed out of the equation, but that idea seems so far away now.  A few weeks ago Jackson had a prolonged seizure that started just after he fell asleep.  Even though the seizure happened as he was laying on me and there was no physical indication that he was having one, had he been in his bed we wouldn’t have known at all.  The type of seizure he had wasn’t one where you shake and convulse all over the place. We thought like every other night he had fallen asleep because it sounded like he had just started snoring.  When Sara went to move him off me and to take him to his bedroom his eyes were open and fixed in one direction.  She picked him up, but he didn’t move or flinch.  His body was limp and he wasn’t responding to anything.  We both started calling his name, but nothing…no response.  Sara quickly called the doctors exchange, but before she hung up we both knew we would be calling 911.

When the EMT’s arrived we wanted them to take to us to Children’s Hospital, but the lead EMT said he didn’t feel that Jackson would do well with that far of a drive. The closest pediatric emergency hospital to our house is St. Anthony’s and we did not want to go there, but were told we had no choice.  The EMT called for backup.  After that he phoned St. Anthony’s to which they told him not to bring us there.  WHAT! That gives you a good indication of why we didn’t want to go there in the first place…  The EMT told St. Anthony’s that there is no other choice, this is the closest hospital, and to call Children’s Hospital for transport.   Sara is freaking out, the EMT is trying to keep her calm, and he tells us only one can ride, but Sara wasn’t having that.  A second ambulance shows up at the house so that someone can drive while the lead and the rookie EMT can work together on trying to get an IV in Jackson.  This rookie had no clue where anything the lead was asking him to get.  He was pulling open every compartment and drawer.  Meanwhile the new driver is slamming on the gas and breaks like it was his first time driving.  The lead EMT had to keep yelling up at him as we took many turns on two wheels.  Even though we were buckled in I still felt like the school bus kids in South Park rolling from one side of the bus to the other.  

We finally arrived at St. Anthony’s, but the ridiculousness did not end there.  There was no sense of urgency from any of the staff; it was like no one really cared.  Everyone was dressed in scrubs, so you couldn’t tell the nurses from the doctors.  There was one lady who seemed to be in charge, but she was fumbling around and seemed disorientated.  She asked us how much Jackson weighed and then tried converting his weight from pounds to kilos out loud.  She then went over to a chart to figure out what dosage of medicine to administer, again without urgency.  Meanwhile another nurse had been poking Jackson like crazy trying to get an IV in him.  6 sticks in the fold of his elbow, nope that didn’t work, 6 sticks in the wrist… finally.  They took a bunch of blood samples before giving him any medicine. They took his temp, it was around 99.  They took his blood pressure and felt it was good, but I don’t remember anyone saying out loud what it was.  They had to intubate him, but the X-ray showed the first try was not successful, so they had to do it again.  People were coming in the room and leaving, but all at the pace of a snail.  It seemed like a lifetime went by before Children’s transport to get there, but when they did everything turned around for the better.  These helicopter nurses mean business.  When they came into the room the St. Anthony’s crew scattered like cockroaches do when you flip on a light.  The lead transport nurse was on the phone while overlooking things and the other two nurses were taking vitals. The IV already was bad, in one stick they got a good one in. They found out quickly that Jackson’s blood pressure was dangerously low.  The lead transport nurse was asking who was in charge at St. Anthony’s, but that lady was nowhere to be found.  She asked one of the other nurses, what did you guys do for his blood pressure?  The nurse just looked at her with a blank stare and replied his pressure was fine when we took it as though it was the transport nurse who caused it to drop. The transport nurse asked for the paper work, the vitals, everything you have, and the nurse handed her X-ray film from the failed and successful intubation. The lead transport nurse just looked at this nurse with such disappointment and re-asked for his vitals.  She then stopped for a second to talk to us, explaining the transport, what medication they are giving him to help his blood pressure, explaining to us that it appears he is having a seizure, and that they want to get him to Children’s as soon as possible, also apologizing for everything that is going on, but reassuring us she will take care of everything.   I could feel Sara sighing in relief and I wanted to, but I was internally freaking out…I felt so helpless.  Someone walked by and asked if we needed a taxi or something to drive us to Children’s, we said no, we would have someone come up.  While the transport nurses were working on stabilizing Jackson, one of the St. Anthony’s nurses was bitching about her job to the EMT and this situation mocking the transport nurse, we were standing right there while she was doing this.  Then another St. Anthony’s person came by on a phone telling us she called for an ambulance to take us to Children’s. WHAT!  Um no thanks, we have a ride on the way.  “Oh, well they told me you needed a ride” she said as she stormed off…like it was our fault for their miscommunication.   What idiots…in the meantime they still haven’t given the transport nurses any of the information they asked.   Transport is done and ready to go.  Sara’s mom arrives to take us to Children’s just before they cart Jackson off to the helicopter.  I couldn’t be happier that we were leaving this hospital however I wasn’t happy that my son was going to be riding in a helicopter without one of us onboard.

To be continued…

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. 

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.     

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!

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.