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.