Words

Today Carson said I love you.  He was lying on the floor in my bedroom and I was playing with his feet.  I looked him in the eyes and said I love you.  Without blinking he said, "I love you."  It wasn't perfect but I understood the cadence and the letter sounds.  Before I could even tell anyone Mike peeked his head around the corner from shaving in the bathroom and said, "Did he just say 'I love you'?"  It was such a good feeling.  I gave up on Carson talking a long time ago.  A doctor in Seattle did a gene study on our kiddos and found that those who were missing a certain gene sequence never spoke or gained and lost words frequently.  Carson is missing that sequence.  He has said words before but then lost them.  He used to say mama and dada.  Sometimes it's almost like his little brain forgets that he can't speak and out of the blue he'll say something.  Right now the only two words that he has kept are eat and yeah.  Eat is more like EEEEEEEEEE but he signs eat at the same time so I know that's what he means.  Yeah is drawn out and really cute, YEEEEAAAAAAAHHHHH.

I asked Carson this morning when he woke up if he could talk in his dreams.  Yeeeaaaaahhhh he says to me.  I swear it broke my heart.  I can't imagine how frustrating it must be for him to have so many words jumbled up inside and only be able to write one or two words at a time.  Even with Proloquo2go - a speaking app on his iPad- there are so many screens and options that it takes a while just to get out everything that he is thinking of.  He usually just gives up and starts typing the letters out.

My mom got Carson an easel for Easter that has a chalk board on one side and a dry erase white board on the other.  In the beginning we were letting him use the chalk side of the board and breaking the chalk into tiny pieces so that he would have to hold it correctly with his thumb and pointer finger they way we were taught in school last year.  Unfortunately the chalk was very messy and left a dusty layer all over my living room furniture, carpet and even the walls.  On top of that Carson's finger began to have a wound on the pad where his fingerprint is.  I think it was a combination of the chalk being so drying to the skin plus he would use his finger to wipe off what he had written on the chalk board instead of the eraser we got him.  Since he is diabetic and wounds heal very slowly and can become necrotic I had to take the chalk away and buy him the markers instead.

The things that he writes now are incredible.  The other day he wrote Shop Vac then erased it and wrote NOT vacuum.  It was so funny.  He has an obsession with vacuums like you wouldn't believe.  If we are in Target, we have to go by the vacuums and you can't just walk down the aisle.  You have to go slow, let him read the brand of the vacuum and explain if it is for pet hair etc.  The other side of that is that he is terrified of carpet cleaners.  We have one in our house and if you so much as open the door to the closet it is in he will hide from you until he is sure that you aren't hiding it somewhere just to scare him with it.  I think it has a lot to do with the pitch of the noise that comes from it since he can only hear to a certain decibel level.  A carpet cleaner (or steam cleaner as we refer to it) is a stamooller to Carson.  For the longest time he would write stamooller and I had absolutely no clue what he was talking about.  Then I saw him on his ABC go app and it showed a steam roller so I announced to everyone with great enthusiasm that a stamooller is a steam roller!!!  Boy was I wrong lol.  Last week he wrote this:  stamooller Bissel.  Our steam cleaner is a Bissel.  I got served HA!  The new one he keeps writing that has me stumped is AIRFACE.  It's not Facebook, Air Force or fire place.  I have begged him to show me what AIRFACE is but so far he likes to keep me guessing.

A HUGE part of the progress we have made with Carson and his vocabulary has 100% come from his iPad and the apps that are available.  I had to buy him a new one a few weeks ago because he cracked the screen on his and Best Buy will send it off and repair it and send it back to your house up to 10 days later. (In reality it took 2 days but I couldn't take the chance).  The gentleman who helped me, Andy, had special needs.  I can't say for sure what his specific diagnosis was but I would venture on something similar to cerebral palsy because he was very sharp mentally, it was his body that wasn't living up to him.  He asked me why I specifically wanted an iPad and I explained that my son has special needs and all the apps I have are all Apple apps and so on.  We started talking about how 10-15 years ago he had a friend who had a 'speaking machine' that had been built by Children's Hospital and the thing was enormous and was very VERY expensive.  There wasn't anything close to what we can have access to today.  Don't get me wrong, $300 for an iPad mini was a huge chunk of change out of our pockets, especially considering that we are living on one income now and Mike is in construction so he doesn't make that much money.  But it's worth it if it means that Carson can learn new things each day and be able to express his wants and needs to me or to anyone for that matter.

Insomnia

One of my unfortunate side effects to Carson's diabetes has to be my insomnia.  I figured out very early on that if I had to check his blood sugar, say, 2 hours after he went to bed and I went to bed to sleep for those 2 hours I would either not hear my alarm or turn it off in my sleep.  It didn't matter if it was right next to my head or across the room.  So I went from trying to get some sleep here and there to sometimes having to stay up until 1 or 2 in the morning.  The bad part about that is that Miss B is typically an early riser.  Up until very recently she was up at 7 am on the nose every day well into July.  So I have been looking at roughly 5 hours of sleep a night.  Then when it's time for Carson to go to bed I'm bone tired but again have to stay up to check his blood sugar but when I CAN go to sleep I've missed that window and I have to wait to be tired again.  It's a never-ending battle. 

Then there are nights like tonight where I don't have to check him because his last insulin was administered at 7:30 so he was checked again at 10:30 and he was in the range where I don't have to give him more insulin for a correction so I'm up right now at 12:20 am for no reason other than I can't sleep.  I have been making the most of my quiet time when everyone else is in bed by working on my things for craft shows that start up here in about a month so it's not completely wasted time...it's just tired time.

Something else I don't think I've mentioned is the fact that I no longer sleep with Mike in our bed.  I haven't since about January.  For one, the bed is too comfy ( a sleep number bed) and again that's when I don't hear my alarm going off.  Secondly, I was literally pushed out of bed.  Our 160 lb Great Dane has now become the proud occupant to my side of the bed.  I simply got tired of fighting for space.  I probably shouldn't have given up so easily but with all the other shit I have to deal with on a daily basis fighting for a bed was the last thing I wanted to do.

My mom has repeatedly told me that I should make her get down and that's that.  Easier said than done.  She's smart enough to wait until you're good and asleep and then she'll slither in.  You don't even feel her.  Then you're waking up in the morning with your knees in your chin curled up into a ball because you just automatically move in your sleep to accommodate the other beings in your bed, dogs or otherwise.  (If you're a mom you'll understand that 100%).  So then shut the door she tells me.  That can't be done.  Carson will wake up in the middle of the night and come find me.  Happens every night.  He would seriously walk right into the door so that's a no-go.  So, I gave up. 

I now spend my nights with my little C-Man.  I got him a full sized bed a while ago and he doesn't seem to mind to share.  Aside from the comfort level I don't even miss my bed.  I think the next step will be to get a pull-out bed and sleep in the living room because as Carson gets bigger and he needs the bed space for himself.  Our dog is turning 2 so potentially she can live for another 10-12 years so who knows how long this will last.  I keep joking with Mike that I'm going to turn my craft room in the basement into my bedroom.  The sad thing is deep down I don't think I'm joking.  I've even looked at paint colors and thought about furniture placement.  Maybe that's just me dreaming of a little place where I can go to just unwind since it's been so long since I've had any time to myself.  Now that I literally have no one to watch both kids for me there's been little time for me.  Mike has watched the kids while I've gone to the grocery store but that's hardly a vacation.

Oh well.  Off to bed to see if maybe I can fall asleep.  Tomorrow is Saturday and Mike is off work so maybe I'll get lucky and be able to sleep until 8.  Fingers crossed.

XX