Monday, May 27, 2013


 Sometimes it takes a brother's love to make everything better
Our little Kai is a character...he has been hit hard with the green monster, called jealousy.   He has always been jealous if Bei sits on my lap.   Over the school year he has become increasingly jealous of Sophia.   Bei and Sophia usually come walking out of school hand in hand and Kai would run up and push Sophia away.  He would cry and sign "no no" to her.   We have worked out a system now where Bei hugs Kai immediately when he see's him after school and then grabs his hand and walks with him.   Sophia has handled it like a champion!  She continues to be kind to Kai and will take his hand when he allows it.   Bei is number one in Kai's eye's right now.   I sing alot to Kai...thank goodness he can't hear well...but now he wants only Bei to sing to him "no mama".    We play a game on the driveway where the three of us try to shoot a basket at the same time.   Kai will push me off the driveway signing "no" and then sign just him and Bei play.   I truly am chopped liver in Kai's eyes, which makes Bei tickled pink that he is number one.   It is a win, win for everybody because I see it as normal development.   I want the boys to be close, but there has been such a developmental divide between them that it has taken 3 years for the connection to even begin.  

Kai's development is increasing by leaps and bounds!  For us with "atypical" kiddo's the smallest things are victories.   On May 19th, Kai hugged me for the first time...a real hug.  I was on cloud nine all day.  He kept hugging me and still does now.    Previously, if you asked Kai for a hug he didn't have the strength to hug.  It was one of those things that was noticeably different between Bei and Kai.   Bei was always such a kisser and a hugger, but Kai just hasn't had the ability to carry out the functions of a hug.    He still kisses open mouthed but can be prompted for a closed lipped kiss.   Personally, I will take any type of hug or kiss that Sweetie Pie is willing to give me.

Tonight Kai fell asleep "talking", just babbling away to himself like he was having a conversation.   The Apraxia diagnosis has been a huge blessing.   He finally is getting the right type of speech therapy for his condition.   Most children with Apraxia are hearing children and some of them are considered "recovered".   It can be a treatable condition.   Kai has the additional hurdles of hearing loss, sensory issue's and oral motor delay.   But with Kai, I am hopeful...he is so amazing and wants to learn so badly. 

Speaking of sensory, he has some quirks that I have to deal with on a daily basis.   His Theratog has the name printed on the right breast of his has to be covered with tape so he can't see the name.   He can't wear pajama's with the pee hole in them because he thinks they are a hole and he freaks out.   He will only wear long sleeves and long pants.   He is going to be one hot little boy this summer.   He had a scratch on his elbow that he was obsessed with.   As long as I kept long sleeves on it, he would sign "better".   Otherwise, he would cry and sign that it hurts...however, he was signing the wrong arm and having to look to find the tiniest scratch.   He is a little OCD and has to follow routines when getting dressed in the morning and at bedtime.  Part of his OCD is the fact that he wants to do everything himself.  Which makes it a little challenging when your body doesn't always cooperate for you.   Part of his quirkiness is that he is a counter...a little "Rainman".   He wants to count everything.   One day he was so frustrated with me because I didn't understand what he was signing because there was no context to what he was signing about.   I usually need to understand what we are discussing because his signs are a little sloppy.  Finally I shouted "ten", I got it!   He pointed to the lights in the kitchen and yep! There are ten canned lights in the kitchen!   He can sign up to 11.    He also LOVES the alphabet, signing it and trying to say it.  He also loves to write his name which is as much of a mess as you would think it would be with a kid with ataxia.  God love him for trying so hard.  His teacher said that he is on target academically for a 4 year old.   Yeah Kai! 

Tonight, he went potty for the first time on the toilet.   I wasn't even trying to potty train him.   He was having a melt down about me putting a diaper on him.   I finally said, "show me what you want" he took me to the bathroom, stood there and pee'd!!!   Very smart little boy!   After that he went and got a diaper, I put it on him and he went into the pantry with the door closed which means he is pooping.  Low tone children take longer to develop the muscles to let them know when they are going to the bathroom.   It would be absolutely HEAVEN if he was potty-trained this summer!

He continues to struggle at school with hitting, pinching and biting the teachers.   I think they ask a lot out of him and sometimes when things are hard he doesn't have the voice, so he uses his body.  He hits at home when he is tired, otherwise he is pretty good.   

Kai is learning, observing, counting, tearing things apart or putting them back together, jumping, moving, get it...he is non-stop on the go at all times.   I am not saying he is ADHD, he can sit and play with a toy for a long period of time.   The point is that he is never just relaxing...he burns up an incredible amount of energy.   Because of the uniqueness of who Kai is, how he loves to learn, his incredible energy level, his hard work ethic and tenacious spirit, I am starting to believe that the sky is the limit for what he can accomplish in life. 

Friday, May 17, 2013

Childhood Innocence

 Bei and his friend, Sophia

 Their friendship puts a big ole smile on my face!
 These two can spend hours together and just have fun! fun! fun!
 These two know how to make each other laugh.
Sophia convinced Bei that he needed a little kiss on the nose...
After a little snuggling on the deck, it was all out water fun!

Monday, May 13, 2013

What To Do???

 The boys playing a rare warm spring day with Bei's friend Gabe.

I tease my boy that at lunch time they must say "Can I please have a "Bei" I need to wipe my hands".   Somebody should really teach that kid how to use a napkin!!

I am not only grateful for the few people that follow my blog but I actually feel obliged to keep it updated for you.   I haven't been doing a very good job of that lately.   Unfortunately, I am feeling pre-occupied at the moment because we are conducting Kai's IEP for next school year.  

His school is really pushing for him to attend the local Deaf school part time.   It would be 3 days at his current auditory/oral school and 2 days at the deaf school.   They really believe that he needs to be with other kids who sign since that is his language of choice.   Oh yeah...have I mentioned that they are having behavioral problems with Kai at school.   Pinching and hitting...ugh...  I see it at home too but not to the extent that they do at school.   So here is the dilemma...he recently was diagnosed with Apraxia which in my mind changes everything.  It means that his treatment plan is different in private therapy and it really should be at his school too.   Kai has recently begun to talk...not like your kid talks, but like a child that doesn't hear well and has Apraxia.    Here is an example, Kai wanted to tell me about the bus in front of his school, I couldn't figure out his sign for it and he finally said "bu"   Oh the bus!  He will say "Ruh" for red.   This is huge!!!  He use to have to be prompted to say anything and it never even sounded close, but now he is spontaneously saying close approximations.   He has turned a pivotal corner and understands that talking is language and a way to communicate.   I hate to stop the progress.    The other big piece for me is the fact that he is having seizures and we haven't been able to get them under control.   I trust his current school staff and it is close by if something happens.   If he goes to the Deaf school it is in the city and will be a 40 to  45 minute drive in rush hour traffic one way.   He would have to get up at least 45 minutes earlier.   A good nights rest is a very important part of keeping seizures under control.   Dan only has an hour at night with the boys right now.  If I put him to bed any earlier Dan will never see him.  

I wish there was a crystal ball and I could see what the best decision is for him.   At some point, I see the Deaf school as an option for Kai.   American Sign Language will always be a primary language for him even if he can talk at some point.   Articulation will be an issue for him.  

I appreciate prayers!!