What is Left Unspoken

Imagine you wake up one morning and your _____ (enter husband, son, daughter, mom, dad, brother, etc.) could not talk.  They also could not write.  Nor point.  Nor walk.  They can’t even use any kind of body language to get their point across like shaking their head yes or no.  How would you know what they wanted?  How would you know what was wrong with them?  How do you think they would try to communicate with you?  It’s a tough one isn’t it?  Welcome to my world with Jackson.  Some days it is frustrating.  Some days are infuriating.  Some days I just want to scream and cry “Why?!”  Other days we somehow get through the day by doing a lot of guessing and some assuming.  But things are changing here in the Klim house. Jackson is finally starting to learn sign language.  We are slowly getting somewhere.

Many moons ago I got it in my head that it was time to start teaching Jackson sign language.  That project lasted about a week before I gave up.  I just didn’t think he was ready.  Plus he doesn’t use his left hand or arm very much, if at all, because of his brain malformation being on the right side.  So I determined he couldn’t do sign language and that was that.  Maybe he wasn’t ready then, who knows, but he surely is ready now.  Many of you may remember my previous post about that damn “more” button.  The fact that Jackson caught on to the purpose of the button so quickly showed us that he was ready and willing to communicate.  So we altered the “more” sign a little (he pats or bangs his open right hand on the table or his leg to indicate “more”).  He did so well learning that sign that we then moved on to “eat”.  It is another sign that you only need one hand/arm for.  For those of you who know Jackson and his insatiable desire for food you can imagine the very short period of time it took for him to learn this sign!  I would say it took about a day, maybe two.  This one sign though has really changed our world.  It has given Jackson a voice and I personally think it has given him some self esteem and confidence.  I used to have Jackson on an eating schedule because I just didn’t know if he was hungry but I also had to ensure he was getting enough to eat every day.  Now I am able to let him tell me when he wants to eat.  However, he loves food so much that sometimes after I get him out of his highchair after eating he won’t even wait 5 minutes before he is making the “eat” sign again.  Nice try Jackson!  I think Jackson would be happy just sitting in his highchair all day while I continually put food on his tray.  So the “eat” sign has been a success.  Now we are working on the “please” sign.  This one is a little harder.  But he is slowly getting it.  Our trying days are not over, but they are getting better.  Jackson being able to communicate in at least one way with us is helping him become less frustrated which makes me less frustrated.

Another thing we are using is pictures.  I have taken pictures of toys, people, strollers, swings, and some food.  Getting him to recognize pictures and associate them with real objects is important for him to be able to make choices.  For breakfast every morning I show him a picture of French Toast and a picture of a bowl of oatmeal (I took the pictures of real food).  I then ask him what he wants for breakfast “Do you want toast or oatmeal?”  Then I wait to see if he (1) looks at one of the pictures and (2) touches the picture he is looking at.  If he does then that is his choice and that is what he has for breakfast.  If he doesn’t make a choice within a couple of minutes I make a choice for him and touch his hand to the picture and say what it is.  He usually makes his own choice and it is pretty awesome!

Jackson’s speech therapist has sent a request off to the insurance company to purchase a communication program called Proloquo2Go for his IPad.  She has used it with him in therapy and he picked right up on it.  It already has preloaded pictures but you can also add your own.  You put the pictures on the screen and Jackson can touch what he wants.  For example, his speech therapist has done a split screen with a picture of water on ½ the screen and a picture of goldfish crackers on the other.  She shows it to Jackson and he has to look and touch what he wants (water or goldfish).  When he touches the one he wants the program will talk and say “water” or “goldfish”.  That way he is hearing the word and seeing the object and making an association.  And he is able to tell us what he wants, not what I think he might want.  This program is pretty amazing and a lot of non-verbal children and adults use it as their sole way to communicate. 

We are definitely making progress in the communication department.  It is just a start though.  We have a long way to go.  I have to say that seeing what Jackson is capable of has made me feel like I have underestimated my boy.  I really didn’t ever think he would pick up signing like he has and I truly never thought he would use the communication program on the IPad as well as he has.  I just didn’t think he had the cognition to do it.  Again the kid has proved me wrong. I sincerely hope that Jackson spends the rest of my life making me look like an idiot by proving me wrong and surprising me.  I really, really do.