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!

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...

Itsy Bitsy Spider

Toddlers just don’t get Day Light Savings time; I think most parents will agree to this.  Before day light savings everything in the sleeping department for Jackson has been fairly consistent with bedtime around 8:00 PM wake up between 5:30 – 6:00 AM.  Around 30 minutes after Jackson takes his medicine, he will walk himself to his bedroom. He has also been staying in his bed overnight a few weeks.  Luckily Day Light Savings didn’t screw that up, however Jackson still an hour behind and. He starts getting sleepy at 6:00 PM, by 6:30 PM he is nodding off without his medicine.  We have been trying to wait as long as possible to give him his medicine and we are barely making it to 7:00 PM.  The earlier Jackson goes to bed, the earlier he rises.  So for the past two weeks he is getting up at 4:45 AM.  High fives all around… NOT!

     

Jackson was getting super crabby over the fact we would not let him go to bed a few days ago.  He was getting so frustrated with us he started to bang his head, so we decided not to push him further. He was sitting on the stairs between my legs as we gave him his apple sauce with medicine.  Sara went to walk away when she spotted a creepy crawly spider in the entry way.  “Eeekkk!” she shouted “Get it, get it….”  In our house it is my designated job to be the bug killer, only this time I couldn’t take care of it because Jackson laying on me and I was keeping him from banging his head on the steps.

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

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

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

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

A weekend full of events..

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

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

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

Getting splashed by a penguin.

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

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

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

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

A possible match

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

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

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.  

These are a few of his favorite things…

I am happy to report that Jackson has been doing much better on his new medicine, Trazodone. He has been on it for a little over a week and so far it has helped him get sleep and sleep throughout the evening.  We have also noticed it help prevent the constant head banging, although he will still bang his head on occasion usually when he isn’t getting his way. The other things we noticed are he is back to his happy morning self, his appetite is back, and he isn’t crabby all day.   His therapists have noticed a difference too, he is more focused during his sessions. Today is National Fragile X awareness day so I thought I would take this time to share some of Jackson’s favorite things.

Jackson loves to play catch with me on the stairs.  I have been throwing a ball at him since he was able to hold himself up in his bouncy contraption. He is starting to get really good at catching. We have all kinds of various balls for him, his favorite lights up as it bounces. He will sit at the top of stairs and toss the ball down to me. His loves to watch the ball bounce on each step to which I make silly sound effect noises. Then I toss the ball back up to him.  It is so fun to watch.

Jackson also loves to watch Mickey Mouse Club House and Baby Einstein.  They are on forever repeat in our house, even though he might only watch 10 -15 minutes at a time.  He has always loved the Hot Dog song and dance, to which he recently started dancing along to.  With the Baby Einstein videos his favorite toys to watch are the toys with balls or any spinny things.  Recently he started noticing the wind up robots and when they are on he starts walking around like them. He also loves it when any of the Einstein kids are on. He just loves people…

Jackson is a huge fan of the swing. We installed a bar in his doorway to his bedroom several months ago and when he seems to be having a hard time swinging will calm him down. Last weekend I put together an outdoor swing-set and our little man is obsessed with it. Unfortunately St. Louis has been under a heat advisory since the day I put it up and if the humidity doesn’t get to you the mosquitoes might just carry you off.  Jackson doesn’t seem to mind the heat one bit. He loves to ride in his radio flyer, stroller, or Cozy Coup. You can walk him forever in those things. The neighbors love to see him as much as he loves to see them.  He will wave and flap his hands in excitement.  When I get home from work I usually take him for a walk and sometimes after dinner. Lately with the heat we are only getting one walk in. His other outdoor favorite is the pool.  Jackson loves the water and luckily Memaw Hamilton has a big pool that we can all get in. This love for water is great because we have no problems with bath time, except for the crazy splashing. Be prepared to be soaked if you ever have to give my son a bath..

Jackson could watch you push a vacuum for hours. Lately though just pushing it around isn’t enough, he has to have it on.  He has figured out that the cord has to be plugged in, thank goodness for those plastic covers.  We bought Jackson a mini-Dyson of his own for Christmas, but he prefers if you push it and not him. He is a smart child…

Jackson likes to watch people come and go from our house. I don’t know what it is, but he loves to watch people through the window. If a car goes by and he hears it, at the window you will find him.  The neighbors across the street like coming home to see him knocking on the windows and waving away. You can see his big smile from across the street. It brings me great joy to see this every morning when I leave for work and when I come home. Speaking of cars, he has this awesome Fisher Price Speedway toy. The center of the floor spins and it has special cars that go on it. It has a ramp the cars go down into the center and the cars go around and around till they shoot through the finish line.  It is a very loud toy, but he loves it. He has perfected balancing the cars on their rear bumper while the floor is spinning. I can’t even balance them on a flat surface. 

Jackson loves music. He will pick a favorite song and want to listen to it over and over. Right now the favorite song is “If you are happy and you know it…”.  He is also a big fan of the “Farmer and the Dell” and “Twinkle Twinkle Little Star”. I am not the vocalist of the house, but since he was born I have sang him to sleep.

Noggin bruising…

Jackson had a rough day yesterday and again today.  He has been banging his head a lot since upping his Tenex to a full dose.  Head banging is something he started doing around the time he got his first ear infection, he was around a year and half at the time. He has had numerous ear infections since then and around Christmas time we had tubes put in.  We have talked to all our therapists, doctors, and teachers to find an answer as to why or how to get it to stop. However no one can help us figure it out. Everyone asks us the same questions, when did he start, does he do it all the time, is he doing it for attention or if he doesn’t get his way, does he do it when you aren’t in the room, does he cry afterwards?  We have tried helmets, but we haven’t found one that works or that he will let us put on, let alone stay on. When we went to TouchPoint they saw that he used the behavior more when mamma was around.  He also used it when he wanted to get out of doing something. Since it is an injurious behavior, you can’t ignore it, so the suggestion of putting your hand between his head and object used to bang on all the while not talking to him or looking him in the eyes came into play.  Sometimes this works, sometimes redirecting works, but lately when try to put your hand in front of him, he will sit down quickly and use the hard wood floor.

Some FXS and Autism Spectrum disorder kiddos do behaviors when they have a sensory need.  To avert the head banging we take Jackson swinging or go for a ride in the car. We also push him in his little Tykes Coupe or his Radio Flyer. Talking him out on the deck when there is a cool breeze sometimes works or putting him on his jumpy horse.  Finally the best ammo for this is pushing the vacuum cleaner around, doesn’t even have to be on. Yesterday he actually broke the skin in the middle of his forehead. We had to use a Band-Aid to stop the bleeding because trying to use a wet wash cloth was ridiculous. Using all our aversions was not successful, as soon as we were done, right back to head banging. Pushing the vacuum around wasn’t working either, for whatever reason he had to have it on.  He just doesn’t seem like the same kid to me, seems less of a morning person and very crabby all day.

Sadly we can’t figure out why our little man is doing this. Does he feel dizzy? Does he have a headache? Do his ears hurt? Is it the medicine? Is it just because of his diagnosis's? Sara is worried that if she takes him in public that Child Protective Services will show up on our door step because he has a huge knot and bruise in the middle of his forehead.  We do live in an area where everyone likes to be up in your business and if you slip up at all the cops will be at the door.  I try to assure her that if CPS shows up we have enough documentation on his head banging behavior that they will just walk away.  Today I am the lucky one who left home to go to work, so Sara has to deal with it all by herself.  Lucky might not be the best statement as today has not been a great day work at all, so I have to figure out how to leave that at work and not bring it home.  Jackson has PT today and Sara is going to call the FX doctor in Chicago.  I really hope the doctor can give us some advice today…

What is sleep...

No, that is not an answer to a Jeopardy question..  Sleep is something that has been lacking in our household. I wish I could have been more prepared for the lack of sleep I have had over the past few months, maybe I would have bottled up some ZZZ’s.

I probably shouldn't complain about not getting enough sleep either, Jackson slept through his infant-hood like a champ.  Even when he was teething, he would sleep through the night.  Looking back, I think he woke up in the middle of the night before he was 2 around 20 times.  Even when he woke up, it would only take 45 minutes to an hour to get him back to sleep.  I was the baby whisper back then; I could walk him up and down the hallway with him facing outward.  He did not like to rest his head on your shoulder and wasn't much for the pat on the back either. Either way, we had it easy then…

Now flash forward to a few months ago… Quick timeline… we got Jackson’s diagnosis on January 11^th, 2011, Jackson turned 2 in February, and we went to our first Fragile X group meeting/dinner in early March.  At the dinner it was so wonderful to meet all these other families in our area that have a child that has been diagnosed with FXS. There were two questions that I remember most from that night, “How is Jackson sleeping through the night?” and “What does Jackson like to eat?” I think every parent there asked us that.  Both of the questions were easy for me to answer, he is a good sleeper and there isn’t anything this kid won’t eat. I remember the car ride home talking with Sara and she said everyone asker her same questions.  Little did we know that shortly after that night everything would change for our family.

Sleep deprivation begins…Jackson started off with going 3 nights without waking up in the middle of the night, then on night 4 he would wake up and be wide awake for 3 -4 hours. Then he would sleep 2 nights and on night 3 up for hours.  Then back to 3 nights… up on night 4.  Sara asked one of the therapists if she had any suggestions.  She said to check with our patrician first, but that Melatonin might help.  Sara called the pediatrician, I turned to Google. We both found the same answer and that is Melatonin is a hormone that our body naturally creates to help us sleep.  The pediatrician was OK with Jackson taking Melatonin, started off with 1 MG. The first night was great and Jackson actually went to bed easier. This worked well for a week, then we were back to a night here or there of waking up. So then we upped to 2 MG. Same thing, worked well for a week. It was about this time we went to Chicago to meet with FX doctor.  She told us about extended release tablets and suggested trying those at 2 MB. If that didn’t have good results, then to try 3 MG and then if that doesn’t’ work then she will prescribe something called Tenex.  So Sara went to a naturalist store and found the extended release Melatonin.  I would say the first week seemed promising on the 2 MG, but then we had 3 nights in a row of wake ups. So we tried 3 MG and that didn’t work either.

Sara felt we needed to try the next step, Tenex and called FX doctor. Since I was on Jackson duty when we were in Chicago, I didn’t hear what the FX doctor had to say about this medicine, so again I went to Google.  I have to say I am really leery of any medication. Tenex is a blood pressure medicine that is sometimes prescribed for ADHD and hyperactivity.  Jackson is 2… and yes he is active and might not stay put for awhile, but again he is 2.  I am not comfortable with using medication just yet. Sara and I talked about it a lot. The first night with half a pill, Jackson went to bed easily, but at 12:30 AM he was awake.  He was also very agitated, seemed that rocking him made that worse.  It took awhile to get him back to sleep, then a few hours later same thing.  I forgot to mention, we padded Jackson’s crib because he has been using it to bang his head to the point of developing a large knot on his forehead.  We are used to the bruises, but this knot looked like we were trying to raise a baby Unicorn.  Each time you get him to sleep and put him in his crib, you are back to square one and fighting to get him back to sleep.  So we caved as parents and have been bringing him to our bed to get him back to sleep and so we can get some sleep too.

So the 1^st night on Tenex, not a great experience in my books.  Sara was told it could take 2 -3 weeks, so we gave it a few more days before calling the pediatrician to see if we can give him his Melatonin along with it.  She said that was OK and it worked one night where he slept all night in his bed. We waited out the full 3 weeks before calling FX doctor. She changed us to a full dose. We tried the first night and going to sleep was easy, but again at 12:30 AM he is up, but this time he goes back to sleep and stays asleep till 4 AM. We have been on this pattern now for almost a week. He seems super chill throughout the day and the therapist feel he seems much more focused during his therapy sessions.  Some nights when he wakes up you can tell he is having such a hard time getting comfortable.  He is violently thrusting himself around the bed until he finds that perfect spot. You have to ready for this because he will knock with his head wherever it lands like your face, your head, your nether regions…  This tossing and turning can go on for an hour which has created some crazy tension and frustration for us.  I feel bad that Jackson can’t tell us what he is feeling; I hate that more than anything.

So everyone in our house is walking around like Zombies. Takes me back to that scene in Date Night where Steve Carrell and Tina Fey are at dinner and Tina’s character says, “If I lay my head down on this table I might sleep for a month.”

A lovely day for the playground

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

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

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

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

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