Sunday, July 20, 2014

I'M BACK!!!!


Special Friends!


 Spending the Summer Together!


 
Having fun!!
 
 
 
You wouldn't believe the reason that I have been MIA...I couldn't get logged into my blog!!!   For some reason has me logged under Dan's gmail account instead of the one that I initially had with google.  Frustrating to say the least!   I don't have time to write a lot tonight, but I will back!
 
 


 
I know I am going to do a lot of posts about Kai and his development, so that is why there are three pictures of Bei.

Tuesday, September 10, 2013

Wonderful Life!





 
 
 
As summer started to wind down and the horizon of school began to creep upon us, I was filled with angst.   I was not ready for my kids to go back to school.  I wanted to keep them at home and just continue to hang out together.   Oh how I envy those homeschooling mom's.  But it is not written in the cards for me or my kids.   When you are a self-described C- personality type, you know it would not benefit your kids or society to raise a bunch of underachieving nitwits...so off to school they had to go.  
 
Bei and I spent weekly sessions at an attachment therapist to help with his separation anxiety.   The work that she did to help prepare us was very understated, yet effective.  It was so nice for us to have that one on one time together and to have something all about him.   As the summer progressed Bei was able to verbalize his anxiety about school, which we could then address his feelings.   The week prior to school started I just knew in my heart that this year was going to be different.   Both Dan and I noticed an increased level of maturity on Bei's part.   The first day Bei cried a few tears, wiped his eyes and walked in the classroom.   There has not been a tear since that day!   He LOVES his teacher!  She is a great fit for him; kind, gentle and nurturing.   Honestly, God has been watching over him since day one because he has had the best teachers.    On his second day, they asked the kids to bring 5 things in about themselves and discuss them.   Bei was the star that day!   Bei wowed the class by twirling a basketball on his finger (he is REALLY, REALLY good!).  He showed the kids how to solve the Rubik's cube with different color patterns.   He showed them his origami boomerangs, planes and balls.  (I can't remember what the other two things were that he brought in).   When I picked Bei up the second day, I could tell Bei had a very successful day!  His teacher told me how impressed everybody was by all his different talents.   Now from my perspective, this is a little boy that has never participated in extra curricular activities.  I love that he worked at something hard, achieved it and received the reward of acknowledgement and praise.   Then later in the week Bei couldn't wait to show me one of his math sheets.  It was a timed 50 question math quiz and he got them all right.   I love that he is having one success after another.  I'm praying that his confidence and success continues through the school year.  
 
 
Kai started at the Auditory/Oral school last week and tomorrow he has his first day at the Deaf School.  Surprisingly, Kai has cried pretty hard each day that he has gone to school.   Last year he never cried once and seemed to really enjoy it.   Tomorrow will be telling to me about what is going on.  I explained to Kai that he will be going to two different schools; one with Miss Barb (A/O) and the other school will have Miss Julie (Deaf).   He had summer school at both schools this summer so he knows who the teachers are.   When I told him about the two different schools, he signed to me that Miss Julie is "better".   He walked around the house, signing "Miss Julie is silly".   I think he really wants to go to the Deaf school and when he see's that we are going to the A/O school he is really sad.   The A/O is very rigorous and not very nurturing.   Last year at times, I felt like they were very fed up with Kai.   He is the only special needs child and I don't think they had the patience to handle him at times.   The other thing that might be happening is the fact that he and I have really bonded this summer.   He still wants me to hold him all the time and play with him, so he might be having separation anxiety...ugh...not another one!!!  
 
I have to say I am so incredibly impressed with Kai.  At his 3 year evaluation, he tested low cognitively -1 standard deviation from the mean.   Let me tell you, I don't think there is anything low in this boy's IQ.   He is fingerspelling all of our names at home...which I did not teach him, he just started doing it on his own.  He started with Bei's name, not even his own name.   He also is spelling words like Sam, cat and hat using the IPAD with no prompts.   He can complete a 25 piece puzzle by himself! He LOVES books!  And then we all know this kid knows his numbers!!  Now that Kai is unlocked from his own body...watch out world!!!    
 
 

Friday, August 2, 2013

Summer Fun 2013

This pretty much sum's up our summer, lots of fun at the cabin with family and friends.  We hit it hard during the week and then head back up for another fun weekend.

Miss me???   Anybody even still checking this thing anymore???   We have had an incredibly busy summer, so much so that I haven't had time to blog!  Kai has had 6 therapies a week, including an aqua therapy where they provide a co-treatment of OT and Speech at that same time.  Plus, he was in a music class, had summer school in the mornings for the auditory/oral school and currently is in the Metro Deaf Summer School program.   That little boy is busy but tired!  The most terrific news in the world has happened this summer, not only is Kai potty trained for peeing but he is totally off the bottle.  Yes, go ahead and insert your eye roll here if you want, but he was still on a bottle at night.   I finally told him that he was too big and that big boys don't have a bottle only babies do!   I honestly walked around feeling like the most courageous woman in the world for getting him off the bottle.   I had been so scared to take the one thing that calmed him away from him.   He has finally out grown his fainting spells where he would lose consciousness to deal with difficulties.  He has grown so much developmentally I knew he finally had the coping mechanisms in place to handle it.  

For Bei we go to attachment therapy on Thursdays which is incredibly insightful.   The therapist is wonderful she does everything in play mode.   Bei really enjoys it.   I am learning a lot and hopefully Bei is gaining some of the tools and skills he needs when we  separate.   Beginning school is very much on his mind and he has a lot of anxiety about it...poor thing.   I tell him that he is strong and that he has done it before many times.   Dan most likely will take him to school the first week, since separating from me is harder for him than from Dan.   It was our therapist suggestion and I think it is a good one.  Bei did not want to be in any organized extra-curricular activities this year which I agreed to for one more year.   He knows that next spring he has to join something.   He loves to play basketball and baseball in the yard and he is darn good at both.    One of Bei's strengths is that he loves challenging mind games on the IPAD that deal with physics and math.   He is fascinated by the Rubik's cube and is able to get sides of it one color but never at the same time.   He is determined to figure it out.   I love his tenacity.   He also loves anything origami.   This is sooooooooooooo out of my league.  He builds boomerangs and balls that you blow air into and they stay blown up.  I am amazed since I always hated that kind of stuff. 

This summer has also been busy with family and friend fun.   We spent an extended weekend in Chicago with my family, which was a ton of fun.   After that we have had people at the cabin every weekend.   We have enjoyed our time with each family!  It has been fun! 



Tuesday, June 18, 2013

Christ Has No Body




Teresa danced in her recital Saturday !!!!  She was so excited . 
She loved it .      Thank you to our wonderful community of friends, Teachers , family , Church and transplant teams that came out to Teresa's fundraiser on Saturday Evening.  We are so grateful to each of you for your generosity , love and prayers for Teresa .

The little girl in the picture above is named Teresa.   Her parents adopted her from China with the knowledge that she had a serious heart condition and that she would need a heart transplant.   Her family was called yesterday and as of now she is fighting for her life.   Her little body is rejecting the heart.   The adoption world and many other communities are lifting her in prayer.   Her story, her life, her families decision to adopt her, made me think of a poem that was recently published in our church bulletin.   It really touched me and spoke to me about what our purpose is here on earth.  



Christ Has No Body
 
Christ has no body but yours,
No hands, no feet on earth but yours,
Yours are the eyes with which he looks
Compassion on this world,
Yours are the feet with which he walks to do good,
Yours are the hands, with which he blesses all the world.
Yours are the hands, yours are the feet,
Yours are the eyes, you are his body.
Christ has no body now but yours,
No hands, no feet on earth but yours,
Yours are the eyes with which he looks
compassion on this world.
Christ has no body now on earth but yours.
 
 
Teresa of Avila (1515–1582)

Wednesday, June 12, 2013

My Little Buddy

video


Bei is my little buddy!   I want to capture his little lisp and his overall cuteness.  I had just video taped Kai and want to make sure that Bei feels included.  Today we went to Kai's therapy and I was elated when the therapist came and  invited Bei to participate in the last 20 minutes of the therapy.  They were in the ball pit together and had a blast!   Bei has a great sense of humor and is usually in a good mood.   Bei still struggles with separation anxiety and doesn't want to participate in any activities with other kids.   To be honest, I LOVE spending time with my kids and don't mind that he is a homebody.   That works well for my personality.   With that said, we begin therapy together to work on his anxiety issues.   I LOVE that little boy to his core!!! 

Monday, May 27, 2013

Rainman

 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 theratog...it 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, climbing...you 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!