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!


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!! 

Saturday, April 20, 2013

Apraxia

 Naked + Glue + Glitter = Dumb Mom


Mr. Beautiful waking up in the morning!
 
 
"Childhood apraxia of speech (CAS) is a neurological childhood (pediatric) speech sound disorder in which the precision and consistency of movements underlying speech are impaired in the absence of neuromuscular deficits (e.g., abnormal reflexes, abnormal tone). CAS may occur as a result of known neurological impairment, in association with complex neurobehavioral disorders of known or unknown origin, or as an idiopathic neurogenic speech sound disorder. The core impairment in planning and/or programming spatiotemporal parameters of movement sequences results in errors in speech sound production and prosody."
American Speech-Language-Hearing Association (ASHA) Ad Hoc Committee on Apraxia of Speech in Children (2007) [19]
 
 
This is the latest diagnosis for Kai Kai Sweetie Pie.    It is the “official” reason why he can’t talk.   Sounds like a nursery rhyme, the little boy with Ataxia and Apraxia. 
 
All neurological conditions are hard to diagnosis, Apraxia is no exception.    Does he have Apraxia because he has oral motor delay?   Will he ever be able to talk?   The answers are all vague.     There are no definitive answers in the neurological world.   The good news is that I have met a little boy through Northern Voices who had Hearing loss, Cerebral Palsy and Apraxia and he learned to speak well.  I have learned that most children with Kai’s hearing loss learn to speak.   Can he overcome this huge obstacle?   I am hopeful because of his spirit and tenacity. 
 
With that said, Kai likes to sign.   Talking is VERY hard for him.    He has a mountain to climb, yet there is life to be lived.   I don’t want his memories of childhood to be one of trying to fit a square peg into a round hole.     We need to meet him where he is at, which puts a lot of responsibility on us as a family to learn a new language and culture.   
 
We are looking at possibly a different school placement for him next year.    His expressive language is American Sign Language.   He needs to be able to sign with peers and to learn in one full language. 
 
We have observed the local Total Communication school.   Total Communication means that the teachers speak and sign at the same time, so that both modes of communication are being taught at once.   Children are expected to sign and speak if they have the ability.   At the school that we observed, none of the children signed or spoke.   When I inquired as to why, I was told that the parents don’t sign or talk to their children.   It made me so sad, it definitely is not the right placement for Kai.  
 
Next week, we look at the Metro Deaf School.   The negative of sending Kai to the Metro Deaf School is that it is considered a “voice off” school.    The teachers and students are deaf, therefore there is no verbal communication.   Kai can hear and he is still building his receptive language pathways.   How critical will it be for him to be in an environment where there is verbal communication?   
 
There are no easy answers.   Being fluid and trying new things and going back and making adjustments for your child is part of parenting all children.   With our special kiddo’s we just have to do it more frequently.    For now we will make the best decision we can for Kai educationally and we will readjust in the future if needed. 
 


Wednesday, April 17, 2013

Inspirational Caregiving

 These pictures are from our trip 2 years ago. 



We didn't bring our good camera on either vacation and just used our camera phone.
 


Bei has grown a lot these past two years!
 
 
In light of the Sandy Hook Massacre and now the Boston Marathon terrorism, I wanted to share a positive story of something I witnessed while on vacation this past March.  
We arrived at the resort and we immediately decided to get something to eat at one of the restaurants by the pool.   I noticed another table nearby us that had 4 healthy adults and then one woman who was in a wheelchair.  The woman in the wheelchair hands were balled in fists, her face was contorted and she needed help eating.   I watched the group interact and I noted how inclusive they were of their friend in the wheelchair.   They were all laughing and I noticed how lovingly one of the men was feeding the woman in the wheelchair.   I started to build their story in my head and was thinking that this man is crazy in love with this woman.  I figured that these two were married, and that she had a rapidly progressive muscular or neurological condition.   He looked like a handsome Elvis impersonator, and he just doted on the woman, all the while laughing and telling stories.    
After lunch we went into the pool and 20 minutes later, who do I see in the water, but this man carrying this woman.     Now, as you can imagine, everything kind of stopped, people stared at this man carrying this woman who was stiff as a board, weighing about 90 lbs into the water.    He was ever so gentle with her making sure her head was above water at all times.  Eventually he put a floatation device under her but she was totally at his mercy.   I can’t imagine the amount of trust that she would need to allow herself to be put into a pool.    There was a waterfall in the middle of the pool that people could go under and he took her under multiple times.   I overheard him tell her to let him know when she has had enough.   Pure Love!    It just exuded from this man.   Are you thinking I have a nose problem right about now???   Like the fact that I am nosey???   Yes, I am very nosey and I like to watch people and figure out their story and what motivates them.   I am honestly the person that you would say “Take a picture!  It lasts longer!”
The next day, I see him wheeling her to the local store.   I think to myself how much effort that takes for him to include her.   How much easier it would be for him to “run quickly” to the store by himself.   He wouldn’t have to be concerned for her safety, ensuring that she can get up the ramp to the store and then maneuvering around the store itself.   I have great admiration for him as a caregiver. 
The following day we are at a different pool at the resort and lo and behold, here this man is again with this woman by the pool.   Once again as he carries this woman to the pool, voices quiet, heads turn and people stare.    My nosy self can’t stop watching them, I am so intrigued.   One of the women in his group comes into the pool and gives him a break.   I watch the two women and I notice them talking to one another.   The man comes back into the water and the woman gently dips her head and kisses the woman on the floatation device on the lips.   Okay, now I am thinking they must be sisters.     So I mosey, my nosy self (with Kai) over towards them and I finally get up enough courage to engage them in conversation.    The story that I have created by watching them is totally wrong, he is not her husband but the woman’s father and the woman that kissed her is her mom.   They both looked young for their age.   The fact that the story changed, didn’t change the authentic, raw and pure love that I witnessed.   I was in awe that these people traveled from Canada with a child who needs 24 hour care.   They were not only engaged with her every time I saw them, but lovingly engaged with her.   As I spoke with them, I learned that Francine, the daughter, was their first born and she has Cerebral Palsy.   They were not victimized by her condition or downtrodden but rather embraced it and enjoyed her and made no apologies if her condition  made other people feel uncomfortable.  
To see people love another human being so unselfishly inspires me to be a better person, a better mom, a better friend, a better sister, a better wife and just a better human being. 


Sunday, April 7, 2013

Taking A Little Peek



 Kai peeking out after bath time!
 

Bei made my name tag for above my coat hook from sparkles and glue!

I would like to take each of you on a little journey with me so that you can get an inside peek into the world of parenting a child with special needs.  
 
Close your eyes and go back to that day that you gave birth to your first, second or third child.   Remember all the hopes and dreams you had for that beautiful little one.   You are anxiously awaiting to see your child and are wondering why the doctors not handing him to you.   When she walks up to you and says, “I’m sorry but your baby has dwarfism…or has spina bifida…or born without their arm.

 You have officially been inducted into a new club; the Special Needs Mom’s Club.    Having a child with special needs puts you into a unique category of parenting.    Life as you knew it only moments before has changed forever.   At the time, you don’t understand the many blessings that this journey is going to give back to you.   You are cast into this unknown world and expected to navigate it, yet nobody hands you the manual stating what the next day is going to bring, who are the best specialist, therapist, doctors,  or what the 5 next best steps  to take for your child are.   In your newly found fog, you know that you need to move forward so you start putting one foot in front of another and you start making your way.  I call this survival mode, it doesn’t look pretty but you are moving forward, you just don’t know what you are moving towards.  You will be introduced to the medical, insurance, therapy and pharmacy fields in intimate ways.   You will be able to explain better to the medical billing person the error of the medical bill because you will become an expert of your medical coverage.  You will have stops and starts, good days and bad days, and eventually, the fogs lifts and you realize that you are living your “new normal”.   You will be living your new normal for a while when all of sudden the rug is pulled out from under you…perhaps it is a new diagnosis, education needs or on-going medical issues.   You realize that as high as you have climbed on the mountain you have not even reached base camp yet.   However, the climbing has become easier as you continue up the mountain because you’ve learned quickly how to navigate the terrain and are more physically and emotionally equipped.

There will be waves of doubt that wash over you and keep you awake at night about the decisions you are making for your child with needs.   You question if you are doing everything within your power to ensure your child’s success   Are there treatment or therapy’s out there that would change the course of your child’s life?  For those of us with children with unknown reasons for their medical condition our minds can take us to really awful places.  Is it undetected deteriorating brain disease causing my child’s in-balance and instability?  You worry about your other children, are you meeting their needs?   Are they receiving enough attention?   You become scared for your child.  We all see the evil in this world on our nightly news and you wonder how can you protect your child from the predators that want to prey on the vulnerable.   You worry about who will watch over your adult child when you die and keep him safe.    You even wonder how to teach your child about following Christ when he lacks the comprehension skills to understand words, like faith, belief and even who God is.   

For most parents with special needs children you don’t have a huge social life.  Your life consists of medical and therapy appointments.    You are too exhausted to socialize in the evening and finding a person qualified to take care of your child takes a lot of work.   You can’t leave your special needs child with the teenager living next door.   There are people that might not want to be your friend because of your child’s special needs.    Your child might lack social skills or may drool or act inappropriately and sometimes different is uncomfortable enough for some people and they don’t know how to be around you and your child.

Those are some of the hard cold facts, but there is an entirely other side to having a child with special needs.   When your life is turned on its head you find out very quickly what is important and what is not important.     If you didn’t have a relationship with God prior to your child be diagnosed you probably will develop one extremely quickly.   You realize what an enormous responsibility has been given to you, but in time you see the many blessings along the way.   The things that other people take for granted are huge victories in your life.   The ability for your child to sit up, to point his  finger, to suck out of a straw, to blow out a candle are all met with huge praise and many times tears of joy.   You learn to laugh and not to take life so seriously, because our time is short here on earth, let’s enjoy it even when we are weary and tired.  You are going to be challenged beyond anything you have ever experienced.  You will learn that you have more patience, tenacity, grace, fierceness and love than you could ever imagine.   You will meet people that you would have never had the opportunity to meet if your child didn’t have special needs.   You admire the courage and tenacity of parents with kids who have much more severe special needs than your child.   You will instantly be bonded to other moms regardless of their child’s special need.   There is a spectrum of needs and parenting certain special needs are harder than others.   But in the end we are all walking a similar path.   Some just get to use a scooter while others have to walk the journey. 

I hope you enjoyed your little journey into the world of parenting a child with special needs.   This is my perspective and more than likely another parent would have a different perspective.   Parenting both Bei and Kai has been a joy.   I am honored that I have been entrusted with two precious little beings both made in the likeness of God.   They have transformed my life in such positive ways.

 

Wednesday, March 27, 2013

Tugging at My Heart Strings

My children are loved by so many, we don't take it for granted.   We are blessed!

It is hard to believe that someone wasn't staring into those beautiful eyes for 14 months.   He has come a long way!!

I heard Bei yell my name "Mom!".   I immediately went into the bedroom to see how he was doing.   He had been home sick from school for two days with Strep Throat.   I quietly said "I'm here, are you okay?"   He immediately burst into tears when he heard my voice.   I held him and stroked his back.  Eventually, I asked him if he had to go potty and he nodded.  I carried his 50lb body into the bathroom and brought him to the toilet.   I then carried him back to bed.   I stroked his hair, his back, while he gently fell back to sleep.     This past weekend, Kai was sick with the same thing.  My concerns for Kai are febrile seizures.   I watch him like a hawk, which is always easy since when he is sick he won't let me put him down.   He sleeps on my lap and clutches my clothes like he is hanging on for dear life.   Making sure that I don't put him down for a moment.   Dan asks if I am exhausted, beat from all the energy given to the two sick little ones.   Oddly, the answer is always no.  It is times like these that make me thankful to God, that I have the opportunity to care and to love these little guys.   It pulls at my heart strings when I think about a little 7 year old in China with strep throat with nobody to call out to, nobody that is going to carry them when they need the extra boost, nobody to stroke their back gently to fall back to sleep.  It makes me sad to think of all the Bei's and Kai's left in China without any mommy or daddy to make things better for them.    I hardly can think of Kai's time in China and the neglect that he endured.  Having seizures and nobody consoling him, loving on him.   His lack of eye contact is something that we still work on to this day. Nobody looking into those beautiful eyes for 14 months just saddens me.   It all pulls at my heart strings.   It is days like these that not only do I ache for my own children's sickness but all those children in China that will never have an opportunity to be held and loved  and to experience the joys of having their own mom and dad.       

Sunday, March 17, 2013

Sisterly Love

I have been so blessed to have two very special people in my life that have taught me the true meaning of Unconditional Love;  they are my two sisters, Nanette and Jeannine.   Fortunately, I consider both of them my friends.  I have shared stuff with them that I would never share with anybody else because I know they love me  no matter what I have done.   They both are pretty much done raising their children.     Luckily for me I get the benefit of their ability to reflect and evaluate the things that they did right and things they wished they would have done differently.


Nanette loving up Kai!


I always say Nanette came out of my mothers womb at 5'9" as a nurturing, mothering, generous adult.   She has an incredible work ethic and is super kind and loving.    My relationship with Nanette was an unusual one, she is only 3 years older than me but she was like a mother to me during my childhood.  She not only made me feel loved, but secure and safe when I was with her.   I always knew she would never let anything bad happen to me.   During swimming lessons when we had to jump off of the diving board, the only way I would do it was if they would go get my sister, Nanette, because I knew she would jump in those waters and save me.   My trust level was not high with other people, but Nanette I trusted to the core.   She loved me unconditional and I knew it even as a child.   She packed my lunches and always made sure I had my gym clothes in my duffle bag for school.   When I would receive deficiency slips from school, she would go through my text books and create study cards and force me to study.   Failing was never an option for her and she wanted to make sure that I never failed either.  We would show animals at the County fair which she fed, cleaned and took care of but when the Fair came around she would let me have first pick at which animal I wanted to show.   One year, to her dismay, I won Grand Champion Pig Carcass Show...yes I did!!!   I bet you all didn't even know there was such a thing!   She did all the work but let me take the glory but more importantly she always allowed me to keep the money from selling the animals.  The year that she left for college was also the year that my parents divorced.    I sobbed when she left for college but never shed a tear over my parents separation.   The biggest loss of my life at that point was losing my sister who was my sense of security.    One of the most important things that Nanette did for me was the summer after I graduated from high school, she stopped by my apartment mid August and  asked me "so did you sign up for college?"  When I told her no, she asked what I was planning to do with my life.   I told her my plans to keep working two jobs and I would figure it out from there.   She quietly listened and then turned to me and said "I knew you wouldn't do it, so I signed you up and I will pick you up in 3 weeks and drop you off on your first day."   Wait!!!  Who is going to pay for College????   She told me where I could pick up my financial aid at the University along with a loan.  For 5 college years, I never once saw a financial aid form or a loan application, she always did it for me.   That one loving act of hers changed my life forever and I am forever grateful.   The great thing about Nanette is that she did all these wonderful loving motherly acts, yet I never felt "mothered" by her.  I always felt like she was/is my friend.    She is a ray of sunshine, who has a smile on her face most days and really feels good about doing nice things for the people that she loves.   Our relationship has changed over the years, after she had 3 babies in 4 years, she was a little busy to wait on me hand and foot.  Once I adopted,  Nanette was also the one that had the courage to address the fact that Kai was having seizures and something wasn't right with him.   Nobody had mentioned that they thought anything was off with Kai, until Nanette had the courage to do it.   She also gave me "the talk" that a mother would telling me to get the help and therapy that Kai needed immediately.   When I was having problems with Kai's neurologist, Nanette volunteered to come up to the cities and "talk with him".   I am sure she would have done it, but I handled it.  She is very attuned about where my kids are emotionally and has shared things that I didn't recognize until she pointed them out.   For example, she immediately knew that good-byes were hard for Bei and told me not to push him to give hugs and not to make it a big deal.  After 5 years he articulated to me that "good-byes are hard for me".   Nanette comes up to the Cities and loves on my children unconditionally.   She gushes and goo's all over them, takes Bei on an adventure every time she is here and plays endlessly outside with the kids.   I am so fortunate to have her in my life.    She has taught me the definition of unconditional love and how to serve others with a smile on your face.   I love her unconditionally too! 


Jeannine with her son Ben


My sister Jeannine on the other hand was only one year older than me, she was my playmate.   I have such fond memories of playing together; we played tons of barbies, school, dress up and had alot of fun together.  I always considered her my friend and felt like she would do anything to protect me.   I  realize we were very opposite from one another, which is probably why we got along so well.   Jeannine was more of a perfectionist and an introvert, she was the Felix Unger and I was the Oscar Madison of the odd couple.  I am more of carefree and social person and Jeannine is more introverted and choosy about her friendships.  Here is an example of a typical play time with me and Jeannine.   The only way that she would play Barbies is if I agreed for her to have the best Barbie, which was Sweet Sixteen and was officially mine.   I always agreed because I wanted to play and Jeannine was the type that if she didn't get her way, she stuck to her guns and she really wouldn't play.   When we played water fights, she got the hose...I got a bucket of water that lasted the entire 3 seconds until I threw it her way and usually missed.   When it was my turn to wield the hose, she would quit and go into the house.   Like a dummy I would agree to the same scenario the next day  and the same thing would happen.   Sounds like a meanie doesn't she?   So who did this quiet bully become as an adult????   Nothing like you would imagine.   Jeannine is one of those rare finds in life, who lives her life by the word of Christ and is so quiet and so under-stated about it.   She is one of the most humble people that I have ever met.  She would never brag about her self or her children's accomplishments.   For years she took care of a 90+ year old woman from her church.   When I asked her what do you do for her?  She told me that along with doing her weekly grocery shopping she would wash the woman's feet and clip her toenails!!!  WHAT?!?!?!?!?  Dear God, please tell me that I don't have to clip old peoples toenails to get into heaven!!!!!!!   I'm sorry I digressed, but I can't stand looking at my own toes, I can't imagine what a 90 year old person's toes look like.   Anyway, she has done a ton of good works in her church and community.   She took in a family member for several years when they had no where else to go and did it happily.  She is the first person our family goes to in a family crisis, she is our rock.   She is level headed, reasonable and has a soft way about delivering powerful messages.   When my mom discovered in 2001 that she had breast cancer, my sister Jeannine was there every step of the way, holding and guiding her.   She did it again in 2008 when my mom had that mysterious infection that almost killed her called Super calfragilious expeolidosis.  To be honest, I still don't know what my mom had, but I bet Jeannine does and could tell you all about it.   Jeannine physically took care of my mom when my mom couldn't do it for herself.  She took care of my grandfather when he was dying and was a stalwart for our family.   Most recently when my father was in the end stages of COPD in 2010, Jeannine spent every weekend driving 10 hours to take care of him.   At night he would have anxiety because he couldn't breathe and there were many times that he called Jeannine by phone in the middle of the night to help calm his nerves.   He told me that "Jeannine has the perfect way of telling you what you need to hear and that he never met anybody else with her ability".    Career wise Jeannine has just soared, she worked in corporate America for many years in the I.T. industry.   She is a perfectionist, detailed oriented, extremely hard work ethic and has a great ability to communicate and connect with others.   I imagine that she is a dream employee.   After my mom's breast cancer, Jeannine decided to go back to school and try a different path, Nursing.   I have so much respect and admiration for how Jeannine has lived her life, her values, virtue and faith.   She is one of my biggest cheerleaders and support team today.   She has taught me the meaning of unconditional love.

Even though I have a different relationship with each sister because they are different people and had different roles in my life.   Through my relationships with them,  I have learned that love is not about perfect people, making perfect decisions.   Sometimes it is about loving through the hurt and the pain but always knowing that there is the safety net of sisterly love.   I can fail and fall down in life  but I know that my two sisters will  pick me up, expect me to do better but in the end they will love me.     

Tuesday, March 5, 2013

Friends


Sophia, Bei, Rosalia and Gabe
 

Two years ago when we moved, one of my primary prayers was that I would find good Christian women to build a friendship.   God has more than answered my prayer!   We chose half day Kindergarten last year for Bei, and there were 4 other mom's that also chose half-day for their child.   Those mom's are the people who have become my friends and my support.  

Recently Kai was sick and I asked Sophia's mom if she would walk Bei out of the school and I would pick him up at the curb.   Instead she insisted on driving him out to our house.    Kai was able to have an extra long nap because of her generosity.   The next day, Rosalia's mom called me and said she would drive Bei home if Kai was still sick.   It would have been a 20 mile round trip drive for her!!   Later in the week, Kai was sick again, (he has double ear infection) and Gabe's mom picked up Bei from school and the boys had a fun playdate.   Once again, Kai was able to have a nice long nap.   These women and the children involved in Bei's life are answers to prayers!!  And Bei has some wonderful friends that he is building his childhood memories with.

I am blessed!

Friday, February 22, 2013

Kai Update

Kai signing Dad or Da Da as he calls him.  
(Sometimes that poor kid looks like pigpen, his mom should really put a clean shirt on him, brush his hair and wash his face every now and then)
 
 
There is just a sweetness about Kai, he is so easy to love.  He turned 4 this month!
 
 
This morning Kai woke up and said "Dad, drive to work.  Mom, stay home.   Kai go to school, it's good.  Bei goes to school."   Or I should correct that and say he "signed" it all to me.   I felt like we were having a conversation this morning.   His sign language is developing and he is becoming so comfortable signing.   Today, his therapist turned to me and asked how to sign mouse, I didn't quite remember but I was looking at Kai and saw him sign mouse.   He is learning more ASL than myself and retains it really well.   ASL is definitely becoming his primary mode of communication.   I requested that the teachers at Auditory/Oral school begin to sign with him.   There was a some push back by the teachers because they are an oral only school, but the Principal who is Hard of Hearing (HOH) said that it was important that they meet Kai where he is at.   We agreed upon 40 words that they would teach him by the end of the school year.   I just counted in his booklet that they have already taught him over 50 words, not including the alphabet which he is still learning, along with counting.   Another little boy just started at Kai's school who also had no expressive language but signs, so it makes me wonder how and if their curriculum will begin to change to start accommodating the needs of the kids in the district.  The positive of the ASL is that I think that it has provided a visual cue for Kai to help with his speech.   We see much more babbling and words emerging.  He will sign brown and say a word very close to brown.   He says the word off pretty well too.  
One of the frustrating things in the Deaf Community is that the schools are either all Oral (like Kai's) or they are voice off Deaf Schools.   That means if Kai went to the Metro Deaf School where they sign ASL, all day he would basically be in silence.   I really appreciate the fact that Kai's oral school is accommodating him.   He LOVES school!   Everyday I ask him by signing, how was school.   Every day he signs, "Good".   I haven't taught him the sign for bad yet, because I'm not stupid people.   If there is only one option, then everything is always roses!  
I am learning about the Deaf Culture and a few of the more interesting points is that the Deaf Culture is very tight and they are very loyal to one another.   They are willing to go above and beyond for a person in their group.   Their idea of physical space is different than the hearing worlds.   It is not uncommon to wave your hand in someone's face or touch someone's arm.   I was in a class where the teacher grabbed my foot and shook it to get my attention.   In the Deaf Culture independence is not valued as highly as it is in the hearing world.  Needing friends and family is much more acceptable in their world.   I've also learned that it is really tiring to have to work at listening all day.   That many HOH kids who are mainstreamed work extremely hard to fit in academically and socially.   That faking it and pretending to hear every thing said  is common among children.    There is so much for me to learn yet.   Kai is doing fantastic and I am pleased with his progress. 

 

 

Sunday, February 17, 2013

The Face of God

This is a picture of Kai a year ago from this month.   He has come so far!


To love somebody is to see the face of God.   I recently heard this quote and thought that it summed up what my last post was trying to say.  When I look at Kai every day I see the face of God.  He is everything I would like to achieve and be some day.  He is fearless, determined, tenacious, powerful, loving, innocent, trusting and intelligent.  

At this time last year Kai was evaluated by the school district and some of the labels that were applied to him can be daunting.  When reading diagnosis such as Severe Receptive and Expressive Language Disorder it can be a real kick in the stomach .   In every area that he was evaluated he scored -3 STD from the mean with the exception of Cognitively Delayed he tested -1 STD from the mean.    However, I know that he is not a sum of his labels but rather a unique little boy with special needs and abilities.  On one part of the evaluation it stated "Kai is unable to physically point to any of the named pictures of the test, therefore, there was no basal or ceiling obtained for the test."   A year ago, Kai didn't have the fine motor skills to even point.  He was so locked in by his own body that an accurate picture of who Kai is meant to be is still being revealed.   Oh my, how far that little boy has come in one years time.  Today that same little boy is signing in ASL signs that require complicated fine motor skills.   He is identify the letters of the alphabet, he is counting, he is communicating his needs mostly through ASL.   We celebrated his birthday today, he turned 4 years old.   We celebrated without candles because he doesn't have the ability to blow outward.   There is still much work ahead for Kai, however, we celebrate Kai where he was yesterday and where he is today.   To love somebody is to see the face of God.  Indeed!! 

Saturday, February 9, 2013

Transformed

Here is a picture of Kai the first day that we adopted him.  Notice how I have to hold him because he doesn't have the ability, strength or muscle tone to hold on to me.   

When I went over to China in 2008, to adopt Bei, I did not know how much my life was going to change.   I did not go to China in search of a spiritual transformation.  We went to China to start a family, plain and simple.  I naively stepped off that plane thinking that everything would be the same when I came back.  However, NOTHING was the same when I came home, and, the most profound change has been a spiritual change.  I wish I had a fascinating testimony where I could say that I saw a bright light and angels started singing but that was not the case.  Instead, everything that I believed in changed once I was home; I was transformed into a true believer.  I knew immediately that I had shed the old me.   More importantly, for the first time in my life, I could honestly say I knew there was a God without question.   I felt and feel his presence daily.  I feel that somewhere along that journey to China I have been given the gift of faith.   I would marvel at the fact that a little boy was born on the other side of the world and because of circumstances out of his parents control, they had to give him back to the Universe.  That Universe, that God, brought him to me, to care for, to love, to guide for the rest of his life.  Bei is so meant to be my child in so many ways.   I get him, I understand him and he is so similar to me.   For two years I secretly reveled in the fact that I was God's favorite!  Two years later we adopted Kai.   Here was this little baby who's brain was not functioning properly (seizures), who had neurological and a muscular conditions, who couldn't hear, who was majorly developmentally delayed.   I look back now and I realized how God had prepared me.   My trust, my belief and faith was in Him.   I knew He had given me Kai to take care of and that he was a special child, as all children are, but this little Kai needed extra special care.    I knew there was plan for Kai and I just needed to follow where God led me.   In an odd way, the year that I fought the school district, has been my most cherished year in following God.   I had no other alternative but to trust and to lean on Him because humanity was failing my child.   However, I knew God would never fail Kai. 

Let me also say that my following Christ looks nothing like what I stereotypically think of "Good Christians".   Prior to adopting I lived a pretty hedonistic lifestyle.  I wasn't very close to God, therefore, I have a lot to answer for.    I thought following Christ would mean using words like pious, righteousness and judgment.   Instead, the words that I hear most often used are Grace, Mercy and Redemption.   I thought there was a way to "act" if you are a Christian and now I realize that He just wants you to be you and live your life to bring Glory to Him.   Believe me a curse word still slips out of my mouth here and there, I still sin, I fail daily, I can't quote any bible scriptures and I don't go to church every Sunday.  But  I also know that God has a plan for me and my children if in we live in obedience to his Word. 
 

Thursday, January 31, 2013

A Special Lady

My cousin Mary Jeannine with her mom ,my Aunt Jeannine (not to be confused with my sister Jeannine who comments on the blog)  I know it is a lot of Jeannine's in the family!
I loved this picture of my Aunt J because it shows her high cheek bones and her gorgeous green eyes.   

My Aunt Jeannine died unexpectedly this week, she is my grandma's youngest sister.   I am so saddened by her passing.   She is going to leave a legacy behind her.    She was incredibly intelligent, well read and educated.  I think of her as fearless, and tenacious without being a bulldog.    My Aunt J graduated with a degree in Social Work from Loyola University and received her Masters degree from University of Illinois Chicago.  All after raising 5 children.   Her gift was that she was the world's best listener.  She actively listened and always asked interesting and probing questions.  She always made you feel that you were the only person in the room.  She never was distracted by others conversation her total focus was always on who ever she was speaking with.   It truly is a lost art...the art of listening.   She traveled the world over and had interesting and funny stories.   She has been one of the most supportive people of our adoptions.  She would cut out articles about China or Chinese adoptions and send them to me to read.   She worked as an adoption social worker in the Chicago area, so she understood the industry well. 

There is definitely a hole in our family without her and it has only been a day.   My Aunt was my Grandmother's youngest sister.   Both of my grandma's sisters had children more in the age range of us.  So we spent a lot of fun times with my grandma and her sisters with all of their kids.   They were more like our first cousins, rather than our second cousins.   My grandma and her two sisters taught all of us what family loyalty was about without being exclusive of others.   They shared, they loved, they laughed and they cried together because they were sisters and they were family.   The three of them were such an incredibly strong role model to us all.  

My grandma and her sisters established our family dynamic where cousins, aunts and uncles celebrate every Christian holiday together in addition to Halloween, New Years and Birthdays.  Not because it is an obligation but because we all support, love and enjoy one another.   No generation is excluded and my family goes to great length to make sure everyone get's to the party.    It is a family dynamic that most people would be envious of.     Aunt Jeannine is going to be missed dearly by all of us, because of her authenticity, compassion and wonderful stories.    She built a legacy that will continue past her time here on earth.   Rest in Peace Aunt Jeannine...you loved and you were loved!


Wednesday, January 16, 2013

Every Child Deserves a Mrs. R

Waiting for the parade to start is serious business for these fella's!


Last year, I received a much needed gift from someone in an area of my life that I didn't even realize that I needed help until time had passed.   I was so caught up into my day to day life of therapies, Dr. appointments, fighting the school district that I was unaware of the importance of what was being given to me.   Let me start off this story by saying that Bei has been gracious and kind beyond words in how he has allowed me to focus on Kai these past 2.5 years.  However, there has been a price that Bei has paid because of it.   Bei had unaddressed educational needs that I wasn't really aware of until he started Kindergarten.   I am going to back you into how the gift came into my life by sharing a little history about Bei.  

Back when Bei had his mandatory pre-school screening at age 3 he didn't pass...he failed!   I was shocked!!!  What???   Didn't this woman testing him notice his "high forehead"????   For those of you who have been reading this blog from the beginning remember all the Asians who came up to me and said "Very smart boy...high forehead".   To refresh your memory here is the Link.  Plus, my own experience told me that this little guy is VERY smart!   But nope, he didn't pass and he was to be evaluated for an IEP.   I was having none of it.   I called the woman's supervisor and we spoke about the test and he was retested.  A second woman tested him and said she had to do a lot more for him than other kids his age, but she passed him.   As I was leaving she suggested that I take him to an Occupational Therapist.   WHAT????   I pointed to Bei's forehead and gave her "the look", geeeeezzzz, she must not know what a Chinese genius looks like!   And therapy???? that is for people that have "real problems", not my perfect little boy with the "high forehead".   (God must have been giggling pretty hard at this point, considering all the therapy that laid ahead of us with Kai). 

Once Bei was enrolled in preschool, the teacher and I concentrated on Bei's emotional needs and dealt with his severe separation anxiety, rather than his academic needs.  He had the high forehead so  I didn't need to worry about the academics.   All of the children's work from preschool was collected each day and put in a book and given to the parents at the end of the year.  When I received Bei's portfolio of work after a year of attending preschool I couldn't wait to see all the work he had done.   I excitedly opened it,  but it was a filled with blank page after blank page.  He had never even traced one letter of the alphabet...gulp!   Uh oh...this little boy is going into kindergarten not able to write any of his letters or numbers.  We spent the summer prior to kindergarten learning how to write the ABC's, and I found out really quickly that writing is hard for Bei.   I see now what I didn't even see then, Bei has fine motor delay...he needs Occupational Therapy...she says while eating crow.

 Let me preface that Bei entered kindergarten with several strikes against him;
  • I was still in denial that he was anything but a genius,
  • I chose half day kindergarten over the full day program, 
  • Kai was in the throws of screaming all night long and I was physically and emotionally drained.
  • I was beginning my fight with the public school district over their denials of Kai's education. 

I didn't have a lot of extra in my tank to give to Bei.  This is where the gift part comes in.  Fortunately for us, God led us to the perfect school for Bei.   It had a small class size of 17 kids and a close knit community of parents and teachers.   Most importantly, God brought an angel into Bei's life to teach him and guide him, her name was Mrs. Redmond.   Mrs. R is one of those teachers that changes the course of a child's life.   She was able to see Bei's strengths, that he was smart but he was significantly behind the other children in reading and writing.  She was able to secure an English as a Second Language (ESL) Teacher to work with him on a weekly basis.  He needed it!!!   She also convinced me that he needed to be at school full day.  That was a hard one for me to let go of him.  But it was also a mistake on my part not to have done it sooner.  The thing that really stood out for me regarding Mrs. R is not only the passion she had for all the children in her room, but the joy and sense of accomplishment she saw in their progress.   I loved how she saw Bei's strengths and emphasized those but didn't shrink away from the fact that he needed additional help.   She did something that I know will be hard to find again with his future teachers...she fought for him.   She committed to closing the academic gap and advocated for him when I didn't have the energy and knowledge to do it.   She also handled Bei's separation anxiety with the compassion and firmness that both Bei and I needed.   When people fight for what is right it is a beautiful thing, but someone fighting for your child because she cares about his education is a REMARKABLE gift.  She changed the course of his life by stepping in and going above and beyond.  My mind sometimes goes to that place of "what if?"...what if Bei would have had another teacher that didn't work so hard to close the achievement gap?   Perhaps he would have been held back because they didn't have the commitment that Mrs. R had?   What if he fell further and further behind in reading?   Let me just say that I am forever grateful to this special woman that came into my son's life when I wasn't able to be the best for him.   I don't believe it was an accident...I believe it was all orchestrated by His hand.   Thank you Mrs. Redmond!!!!!!!!!!!!   I will be eternally grateful! You have raised the bar high for all of us.   

This year, I am able to go fight the fight for my little guy.   I am pushing him because I believe that he can close that achievement gap.   I work with Bei on a daily basis and he is making great strides in his reading and writing skills.  He also is being evaluated by an Occupational Therapist for his fine motor skills and we will get him any help that he needs to gain the skills that he needs.  Currently, he has the hand writing skills of a doctor...hmmm...I know he would make a great doctor because have I mentioned his forehead?...it is huge!!!