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...

That’s funny to him…

It always warms my heart to watch and listen to a child laugh.  Jackson laughs a lot.  Some of the things Jackson laughs at might not make one laugh, but because his laugh is contagious you can’t help but laughing alongside him.

One of things Jackson hysterically laughs at is playing a game of boo.  Not to be confused with peek-a-boo, you have to actually hide yourself behind a wall or something.  Jackson will actually lead you to where he wants you to pop out of, then he will run the other direction, and come back so you can jump out at him.  The louder you say boo and the more you can startle him the better.  When you surprise really good he will fall to the ground and they hysterically laugh.  This game keeps his attention for at 30 minutes and if he had it his way he would play it longer.   Now that his sign language has improved he will sign “More, Please!” which makes it hard to resist. I incorporated the boo game with swinging.  He absolutely loves this.  With the indoor swing the game is much easier because you can hide behind the wall or door across the hall.  Here is a video snip-it of that. Sorry for the lack of light:

Another game Jackson enjoys laughing hysterically at we call “Get-cha”.  My sister-in-law started this with him and he has in-listed in me to play this with him when she is not around.  He laughs much harder when Tricia plays with him, however our games of “Get-cha” are little different.  Tricia will turn Jackson upside down while kissing all over his neck.  The two of them feed off each other’s laughter.  It is so freaking cute.  My game of “Get-cha” is a little different.  Jackson lies down on the floor and signs “More”.  Then I crawl or creep towards him saying “I’m gonna Get-cha!” and I lie on top of him and try to get kiss all over his neck.  He likes the deep pressure of me lying on top of him and he also likes the tickles on his neck.  Sometime I blow a big zerburt on his belly. When you play this game with Jackson, you have to hold his hands down because he gets so excited he pulls your hair.  We are really working on trying to keep him from doing that, but it is hard because there are so many triggers.  Man he can pull you hair hard.   As soon as he pulls the hair, the game is over and it is hard to end because he keeps signing “More, more” and even though it is cute I don’t want to enforce that behavior.

Jackson also laughs at people when they sneeze or blow their noses.  I never thought of this to be funny, but after thinking about it…why wouldn’t it be funny.  Think about it, when you sneeze you can’t control facial expression and most of the time you probably look like a cartoon character.  I am one of those rapid fire sneezes; they are very quiet and come in 6’s or more.  People have made fun of my sneezes since I was young, but I can’t change it.  When I blow my nose it is usually just a quiet, you don’t typically hear it.  Last night after dinner I had a rapid fire sneeze fit to which Jackson laughed at.  I grabbed a tissue and started to blow my nose.  Jackson pointed at me with a smile, so I asked him if he needed a tissue.  He nodded yes, so I handed him one.  He took the tissue, held it up to his nose, and then started blowing into the tissue making sounds affects imitating his interpretation of how to blow his nose.  Sara and I laughed hysterically and with iPhone nearby took video.  We welcome imitation in our house with open arms. Here is the video:

I hope Jackson will always find laugher… I only wish the world could see things through his eyes.  

The reality is…

In February we experienced a very scary roller coaster ride when Jackson had a prolonged seizure.  The week we spent in the hospital was like one of those fuzzy nightmares you can’t seem to wake yourself up from.  So many doctors and nurses visiting, asking so many questions, going over every inch of Jackson’s medical history.  Jackson just turned 3 and his medical chart is 10 times the size of mine.  It has almost been two months since the seizure so Sara and I had been contemplating moving him back to his big boy bed.  I find it so hard not to be afraid of doing this. What if he has another seizure like this last one where he didn't make a noise didn't move?  Is this the way the rest of our life is going to be? How do you get a piece of mind after something like this?  We were scheduled to have a follow up visit with the epilepsy neurologist on Wednesday, April 25^th.  The doctor had told us we can’t put Jackson in the bubble and watch him sleep every night for the rest of his life in fears of him having another seizure.  I think I looked confused when he said those words, my thoughts were…does this guy have any children?  How the heck can a parent sleep under these circumstances, I mean really…  Does this man even have any clue what it took for us to have Jackson?  Sure they put him on anti-seizure medicine, but warned us that it might take a while to find the correct dosage, or even the right medicine. Awesome! What great odds.  We asked a lot of questions, but these thoughts have continued to resonate in my brain as we got closer to our follow up.  Even with Jackson sleeping in our bed though there are no clear warning signs of when a seizure is going to strike.   I find myself bolting straight up in bed in the middle of the night sometimes, grabbing my cell phone for light to see if he is breathing normal and make sure his eyes are closed not gazing into never never land.

A little over two weeks ago Jackson got a really bad cold.  Runny nose, bad cough, even a fever.  The fever was low grade, but that didn’t curb any fear as fevers can trigger a seizure.  We kept Jackson from school and monitored him very closely.  He was very cuddly for a few days and his hyper activity came in very small doses.  After day two of fever Sara took him to the pediatrician.  We had been giving him Ibuprofen and it was bringing the fever down, but the pediatrician suggested us not to give him any more since the fever hasn’t been high and that a fever is not always a bad thing, it is his body fighting off a potential infection.  His lungs sounded good, no ear infections, and drainage didn’t indicate infection either. The next day his fever was gone, but the runny nose and cough were there for a few more days.  Sara kept him from school because he still hadn’t bounced back to his normal self; this also gave him the weekend to recover.  Come Monday we sent Jackson to school.  Jackson still had a runny nose and a terrible cough, but he seemed to be feeling much better.  School said he seemed fine all day; he even took a 2 hour nap.  Both Sara and I found that odd, a 2 hour nap is very rare.  Jackson’s appetite was back to normal as he was at the pantry all night asking for cookies and crackers.   It seemed like Jackson was very frustrated all night though.  We would give him choices and usually you only have to give him two and he happily chooses one, he seemed upset over the choices we gave him.  He seemed to be banging his head a lot.  We sat down to a nice dinner; Jackson even ate the creamy spinach.  So we thought perhaps his behaviors were because he was super hungry.

Jackson took his last dose of medicine before bed that night and went to sleep without any issues. Then a little after 10:00 PM Jackson started throwing up in bed.  He took the brunt of it, the sheets and my pillow took the rest.  Sara scooped him up, took him into the bathroom.  He was real fussy, so she kept him nearby the toilet as we disrobed him for the shower.  Sara noticed he was shivering while she rinsed him off, a little shaky.  As she cleaned him, I took care of the bed.  Sara wrapped Jackson up in a towel and brought him to the living room to get him dried off and put lotion on him.   That was when round 2 of puking began.  I dashed in with a bowel, but was too late for the majority of it when I saw Jackson go into his seizure.  Sara was holding him at the time when his body went limp and he became non-responsive.  We looked at the clock to get the start time and started calling to him, trying to see if we could get him to come out of it.  Just after 5 minutes we administered his emergency medicine which is given rectally, but he had a bowel movement shortly after.  Sara stayed with him, I called 911.  We live really close to our local fire and rescue station so as I was on the phone you could hear the sirens blare.  Sara in her sleepwear is asking me to grab her clothes. I was trying to remain calm as the 911 responder asked me questions, but I didn’t grab the proper attire for Sara to wear.  I think it was like a halter top thing-a-ma-whatever and some yoga short pants.  So a few trips back and forth, I think I got her something she could actually wear. We had fire, rescue, and EMS show up this time around, 6 men standing in our living room asking us the million questions.  The first question being the most important, where do you want to go?  Answer (without hesitation in unison with high voices): CHILDRENS!  They hooked him up to a few devices before taking him out the ambulance.  Jackson blinked a few times, but was right back to the fixed stare.  Sara and Jackson left on the ambulance as I ran around the house like a chicken with my head cut off getting the dogs gathered and grabbing wallets and diaper bag with toss what I thought was important at the time.

When I got to the hospital I made sure to pick the widest parking spot. After passing my security test the guy at the front desk took me back to where Jackson and Sara were.  He was still not responding, he was on oxygen, and the rest of his vitals were in a good state.  There were a few nurses and two doctors, they were not confused and fumbling around like we saw at St. Anthony’s.  A nurse popped in to ask the doctor a questions and the nurse happened to be one of Sara’s 2^nd or 3^rd cousins. They administered a dose of medicine to bring him out of the seizure, but after 5 minutes he was still in it.  So the administered a second dose of the same thing, after 5 minutes he still wasn’t out of it.  The third dose was something different and he started blinking and went to sleep.  I can’t think of the names of these medicines as I write this.  Looking at the time it was just after midnight so Jackson’s seizure activity lasted for at least 2 hours.  The ER doctor told us she wanted to monitor him over the next hour or so and to expect that we would be staying the night.  Depending on how Jackson does during this time would determine if we would be going to PICU or neurology floor.  Sara’s cousin popped in and out checking in on us even though she wasn’t our dedicated nurse.  Jackson slept the entire time we were in there.  They did two nose swabs to check for flu virus, both came back negative.  Around 4:00 AM they moved us to the neurology floor.

We were put in a room that already had someone in it like the last time we where here.  The doctor came in to go over the events of the evening and Jackson’s medical history.  The doctor wanted to keep us overnight, hmm…it was just after 4:00 AM so not much more of overnight left.   We got all settled in and I got a good hour of sleep in before calling work to let them know I wasn't going to be in.  A little later in the morning Sara ordered some breakfast, Jackson was in and out of sleep. Jackson didn't eat much, but he was real thirsty.  The doctor came in to see how Jackson was doing later in the day.  He wanted to see if he could walk, but Jackson was not ready, couldn't really stand on his own.  The doctor thought if he would walk then he would send us home.  Sara and I told him we did not want to leave until we knew he was going to be OK because the last time we were in the hospital we were discharged and back in the same day.  Sara’s mom came up to visit which allowed us to run home, shower and change, let the dogs out, and grab a spare set of clothes.  While were home Sara’s mom called, Jackson threw up all over her, so we grabbed spare clothes for her.  When we got back to the hospital Jackson was sleeping again.  The nurses and doctor both explained he would probably sleep a lot because of the medicine he received to bring him out of seizure.

In the evening my mom, dad, and sister-in-law came up to visit. Jackson was really excited to see them.  Tricia brought a box of cheez-it’s and Jackson was ready to eat. He was all smiles while they were there. He cuddled with memaw for a bit.  Tricia played a game of get-cha with him; it is where she kisses all over his neck and he belly roll laughes.  He also jumped into poppy’s arms for some back tickles. Jackson received his nighttime medicine and my family left so he could get more rest.  It proved to be a long night though with all the sleeping he had done.  He was agitated to have the pulsox on his toe and he was ready to be out of bed.  We wrestled a lot with him, he seemed really uncomfortable.  They gave him a does a Tylenol and that seemed to work.  In the morning Jackson ate a lot at breakfast.  He was definitely feeling better. The doctor came in early to check in on him and see if he could walk on his own. He was super wobbly and not steady at all on his own.  The doctor said maybe after he has some more food he would be better.  Jackson still could not leave the room though because one of tests they do to check for various infections takes a few days, so he was still on quarantine.  Our nurse brought us a wagon, so we pushed him around in our room. That helped him a lot.  By the midafternoon he was more steady on this feet and they released him.  He was so happy to be carting around in the wagon and then riding in the car.

Sara’s mom said we could bring him over to her house so we could get some rest.  When we got to her house he curled up on the couch and took a nap.  We left him and ran home to get nap ourselves.  When we picked him up he was hyper and ready to play.  He was getting around much better, but was still a bit clumsy.  By the next day he was 100% himself, running down the halls and full of energy. We were glad to see this seizure didn’t take him down as bad as the last time, but it was also a reality check that the anti-seizure medicine isn’t a cure all.  It could take us awhile to find the right dosage or even the right medication, in the meantime I hope that my little man doesn’t continue to have to have these prolonged seizures till we get it exactly right.