Mmm, Mmm, Mmm, Mmm

Last night was a rough night of sleep in our house again. I was ubber crabby to say the least. It was hard to not get out the shower to finish getting ready for work, but I made it through. The best parts of my day are leaving for work and coming home. You might think that is strange to include leaving for work in that statement, but let me explain. Even though today was rough getting out of bed I am still one of those morning people.  I have always looked at mornings as a fresh start to a new day.

Sure...going to work is not my favorite thing to do, it is the send off I get that makes it so special. One of Jackson's favorite things to do is watch people leave or come. He will stand at the window, knock and bang on it, flap his hands, making his "Eeeennnneewww" sound, jump up and down, and wave. He is so excited. If the neighbors are out, he will get just as excited and wave to them. He loves to see people on the other side of the window.

This morning Jackson was really fussy, but after laying around a little bit with mamma, he seemed more his morning self. He knows when it is close to the time for me to go down the steps and drive away and he starts getting excited. Mamma and Jackson were sharing a banana at leave time, but that didn't stop him for giving me a kiss goodbye. Mmm, banana kisses. I get my kisses from everyone every morning and then down the stairs I go. As I open the garage, I can hear him banging on the window and jump'n up and down already.  I start the car, pull out, and look up...there is my son with the biggest smile on his face. I always roll down the window so I can hear him. He is waving feverishly while jumping up and down, I am waving back to him wishing I could sit in driveway until he is bored with smiling and waving at me. I need to get a picture of this, perhaps even some video.

Coming home I get the same reception.  As soon as Jackson hears the garage door open, he runs to whatever window he is closest to. The best days to see this is on Monday and Tuesday when I stop in the middle of the driveway to either take out or bring in the garbage cans. You can hear him from the driveway, "Eeeennnneeewwww!" and knock away. If he is downstairs when I open the door he runs up to me and pulls on my pants, then runs away and comes back. This goes one a for a bit before I get my welcome home kiss. If he is upstairs, he is waiting pacing back and forth at the top, arms flapping away.  He looks so happy and excited to see me. I can't even explain how good it makes me feel.  I get kisses from everyone when I come home from work every day.  When I say everyone that included the doggies. How lucky am I to have that much love under one roof!

Another thing to add about the morning drive in...  I am a huge fan of music and I am lucky to have Sirius satellite radio. It gets me going for the day and I also have a dock that allows me to listen all day at work. It is a total savior for me. When I drove away from my house this morning the first song was the Crash Test Dummies "Mmm, Mmm, Mmm, Mmm". I haven't heard that song in forever.  The line in the song that hit me and got me thinking was, "She couldn't quite explain it."  That line inspired my post today, trying to explain how lucky I am and my bubbly mood despite the limited sleep for the week. It also makes me think of the doctors, philosophers, psychologists, or therapists who can't always explain the whys or hows to the many things they discover about us humans. Or even when they have the science behind all the discoveries and still can't answer the questions.  Perhaps..."they'd just always been there....."

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.”