Wednesday, December 26, 2012

I Have A Plan!

 I don't have my Christmas Pictures loaded but here are some Halloween Pictures!


Bei was able to carve the entire face with a butter knife.  He was so proud of himself!


 
The week leading up to Christmas was HE double hockey sticks.   If I didn't know better I would almost think I was going through a hazing week in college.   Each day brought a new obstacle to face.   It started out last Saturday night with Kai having multiple Grand Mal Seizures and eventually being transported to the hospital by Ambulance on Sunday morning.   He was just wiped after the seizures and there was no way he could go to school for most of the week.   His poor little brain needed a good rest.   On Tuesday, Bei and I pulled an "all nighter", my normally healthy kid spent the night throwing up and could not go to school on Wednesday.  This is the week leading up to Christmas where we are having 20 people over for dinner on Christmas Eve.   My house needed a good cleaning, all the presents needed to be purchased, grocery shopping needed to be completed, there was a lot of work that needed to be done.  Dan told me multiple times to get our former housekeeper to come and clean the house, however, I kept telling him "I have a plan!"   It really was two fold, I don't like people in my house when I am dealing with sick kids and I really thought that I could pull it all off.    Thursday rolled around and I finally can get both kids off to school and here is where "my plan" goes into action.   EXCEPT...I end up driving off the edge of my driveway and into a snow bank where I then have to spend hours digging myself out.  I finally dig myself out to find out I have locked myself out of my house...there goes my plan for the day!!!  While picking up Bei at school that same day one of the mom's asked if I was stressed about having Christmas Eve dinner and I said "Nah, I am a type C- personality.  What gets done, gets done...I don't worry about the rest."  Oh yeah, I am a big talker like that, thinking I am all cool and not stressed.   Thursday night Dan pretty much begged me to call our former cleaning lady...but I still believe in "my plan."   Friday is going to be a big day for me and I am going to be extremely productive in cleaning the house, buying all the presents and going grocery shopping...all in the 2.5 hours I have in the morning without Kai.   I wake up Friday morning to literally a fire in my belly...I don't feel well.   Last year I was diagnosed with something like a stomach ulcer.   Even though I am not nervous on the outside my inside is screaming "FOOL!!  YOUR PLAN IS FAILING!!!   On top of my own illness, Kai's school calls me after he has been there for only an hour to tell me that they think he has Thrush (he doesn't) and they want me to come pick him up.   The day was shot and I was still not feeling well. 
 
 
 
 
 Then finally on Saturday my week took a turn for the better, because my mom flew in from Chicago to spend Christmas with us.   Even though I am close to 50 years old I still need my mom!!!   And like mom's do she made everything right.   She worked her tail off!   We cleaned, we cooked and we cleaned some more.   She played with the kids while I cleaned and then I played with the kids while she cleaned.  She wrapped every single one of the kids presents like a professional while I put the bows on them.   She was amazing!!!   She was a cooking machine and she is a great cook!!!  We were able to pull out Christmas Eve dinner for 20+ people with an immaculately cleaned house and had lots and lots of presents under the tree for the kids on Christmas morning.   I don't know why everybody was so worried...I had a plan...

 

Tuesday, December 11, 2012

Theratog

Kai in his Theratog suit that goes under his clothes

My brother Nick recently picked us up from the airport when we flew in for a family visit.   The first thing he said was "oh my gosh, he is normal!"   It was music to my ears!!  He was referring to Kai's walking ability.   Remember how I would describe Kai as walking around like a drunken sailor.   In October Kai started to wear his Theratog on a daily basis.   It has made a tremendous difference in his balance and motor planning.   The purpose of the suit is to provide a level of pressure to the skin that you and I take for granted, so that he is aware of where his body is in relation to the wall, floor and other objects.   It also forces him to use his muscles in the correct way, which helps the brain to know what to do when he doesn't have it on.  Currently, Kai is wearing the Theratog from 9:00 in the morning until about 3:00 p.m.   He wears it under his clothes and really seems to like it. Another therapy tool that we recently started to use is called a weighted blanket.   You can buy them on line for hundreds of dollars but my therapy facility has a woman that makes them for $35.00.   She sews 6 pockets into a blanket and then fills popcorn kernels into ziplock bags that then go into the pockets.   When we need to wash the blanket we remove the baggies of kernels and we can throw the blanket in the wash.   I put it on Kai at night to help him sleep and he loves it!   Once again it is giving him a pressure that is calming to the body and it provides him a sense of where his body is in space.  I am learning so much about his neurological issues and I am very hopeful that he can work through much of it.

Currently Kai consistently signs 15 words.   Giving him a voice through sign language has really opened up a new world for him.   He can now tell me when he is hurt, thirsty, hungry and when he wants things on or off.   Recently he learned the sign for yes and I didn't realize how empowering the word "yes" can be.  Before if I asked him a question and he wanted to say yes, he would just look at me.   I would have to guess that yes, he wants to do it.   But now, he readily shakes his hand yes when he wants things.   It makes life so much easier for the both of us.   He can sign the ABC's to the letter G and is signing up to the number 10.   This week he learned the sign for family.   He will point to Dan and he will spit a "d" sound out for dad, points to me and says "mom", is trying to spit the "b" sound out for Bei and then points to himself and then we always remind him about Elvis too.   Kai's expressive continues to be difficult.  I am asking his Auditory/Oral school if they will support him in sign language.   It is a stretch to ask them to do it, because it isn't their curriculum.   I want him to remain in the Auditory/Oral school because he is closing the gap on receptive language and they provide him so many incredible services.   Yet, he needs an expressive language also. 

The next venture for him is to start swallowing and feeding therapy.   The therapist at Functional Kids really believe that a lot of his issues stem from his oral delay.   We are going to start hitting that really hard.  I am waiting to hear back if my insurance pays for the CPT4 codes that are billed before we dive in.   I don't want to end up with a big bill in 6 months. 

Kai is making remarkable progress!!  It has been incredibly rewarding to parent him and see his hard work pay off.   He is a blessing and an exceptional child. 


 

Saturday, December 1, 2012

First Day of School Pictures

 I've got him mom!

 Uh Oh!  He is getting away!


Defeat! 
 
Most people proudly show off their children's first day of school pictures.  Mine however are always a thud.   We are always racing to get to school on time, even on the first day.   So I am yelling "hurry, run over there, hold Kai and make sure you are smiling.   Good enough!  Let's go!" 
 
 
The pictures below are of Bei that I took of him at his school.   I think there is something sweet and innocent about each picture. 
 


 
 
 


Parenting Partner







The other day an acquaintance told me how she has been encouraging her single 20 year old daughter who is currently going to college that she should have a baby. She went on to tell me how she longed to be a grandmother and she just couldn't wait until her kids started having babies.    Let me just say "Knock Knock Puddin Head!"    Too many people go into parenting without giving it the proper due diligence.   It is not for the faint of heart.   It is rewarding but it is also exhausting, frustrating, painful, anxiety-ridden and just plain hard work.   And I am not talking about my special needs child.

Luckily, I can't imagine parenting these past 5 years without Dan by my side.    Dan is the perfect parenting partner for me.   We have similar values and similar ways in which we parent.    I personally LOVE how he parents our children even though he is not the dad that is home by 5:00 every night.   Dan is a workaholic.   Dan is usually out the door before we get up and he gets home late, usually after 7:00 p.m.   Fortunate for us, both our kids have late start schools so they can have later bed times, so that they get to spend some time at the end of the day with Dan.   What I appreciate is the fact that Dan works really long hours so that I can stay home with the kids, but after working those long hours he comes home and spends quality time with the boys.   He doesn't sit in front of the T.V. instead he reads with them, plays basketball, soccer, Wii and lots more.  Weekends are our time together as a family.   The best thing about Dan is that he meets the boys where they are at developmentally, emotionally and intellectually.   He really knows how to build character and has a natural ability to bring out the best in people.    He is like a coach, motivating, encouraging yet having a strong hand to lead them.   I appreciate and I am so grateful for his parenting style, the way that he loves our children and the fact that he isn't afraid to demonstrate that to them openly.

Our marriage has been strengthened by having the kids in our life.   We work as a team and have this common goal of raising, healthy-minded, independent, God-Centered children.   The depth of our marriage has grown immensely in the past 5 years, for that I am blessed that I am not parenting on my own! 

Sunday, November 25, 2012

Ironic!

Oh No!! I have been waiting to get a new laptop so that I can finally download my pictures from my camera to my new computer and then update the blog with pictures.   Well...we got the new computer and when I went to upload the blog told me that I am out of GB for pictures!!!  Ugh!   I have to figure out if I want to pay a monthly fee to continue or if I should move to another platform that allows me to blog.   I will let you know what I decide.

Monday, November 5, 2012

Holding the Moon

Bei holding the moon!  My clever friend Beth took this picture at our cabin and I just love it!
 
Bei is definitely growing into such a wonderful little man!   First grade is being kind to him and he is doing well over all.  He is such a smartie!   Bei loves to conduct experiments and one of the things that Dan purchased for him is a rocket that propels into the air once you dump a solution in to it.   Recently, they were going to spend another Saturday afternoon watching it blast into the sky. So I quietly pulled Dan aside (or so I thought) and said "I think you should get on youtube and find out why that solution creates the explosion that propels the rocket to the sky and then explain it to Bei so he is learning."   With that I hear Bei say, "Mom, I already know why...when you mix vinegar and baking soda together it becomes carbonated and then it makes it explode."   Dan added "yeah Liz, that is why baking soda is called bi sodium carbonate...duh."   Okay, he didn't say the duh part but I felt like a duh.   The next day Bei and I were playing with this ball that I ordered on-line that bounces up in the air 75 feet.   I said to Bei "I wonder how they can get this ball to bounce so high."   Bei immediately said "it is mixed with Helium."   How does he know these things???  He is 6 years old!    I am assuming he is right.   Bei has been a really fun child for me to raise.  I love his sense of humor, his kindess and sensitivity and how he loves so unconditionally.   
 
 
 So sad...but I have succumbed to stealing pictures off of my facebook page since we don't have a computer to offload my pictures from my camera.

 
Kai is doing incredibly well.  First of all, I have to report that he is only waking up once or twice a night and I can get him back to sleep relatively easy.   This is a huge change for us!!!  I am finally getting a consistent good night sleep.   Honestly, I don't know how either of us functioned during the day at times.  One night he got 4 hours of sleep and I got 2 hours...it was really rough at times.   I wonder if those twenty years that the lack of sleep has aged me will disappear with good consistent sleep.  I can only hope...  
 
Our other great news is that we have found a new therapy place for Kai.   The first time he had therapy at this new clinic, called Functional Kids, I felt as if the heavens opened up and the angels started singing.   The therapy is purposeful and is focused on all of his various therapy needs.   The philosophy of the clinic is based on Sensory Integration, which ties neurology to sensory input.   For example, part Kai's Ataxia is that he doesn't know where his body is in space.   You and I understand where are thighs are even though we don't necessarily feel them at all times.   A child like Kai doesn't know where parts of his body are in relation to the floor, wall or other things.   Kai might also be experiencing dizziness due to his ataxia.   They provide what I call dizzy therapy where they spin him on a swing in a purposeful way.   We are brushing his skin and doing joint compression masages several times a day to get that sensory input waking up the nerves to talk to his brain.   Many of the kids do listening therapy where they have headphones on their head listening to a music that creates a natural body rhythm that they may lack.   If your child is autistic, ADHD or has neurological issues like Kai I would highly recommend this place.   I am also going to start speech therapy at Functional Kids because they told me that they can help with his swallowing, drooling and his oral motor delay.   He needs alot of help in that area.   His tongue is so under developed and he still does not swallow correctly.   To say the least I am excited and hopeful about his future. 
 
His school continues to go extremely well.  He recently started to wear a Theratog or a compression suit.   The physical therapist from the school district taught the teachers how to put it on him daily so I don't have to deal with it in the morning.   It is a complicated contraption.   If you have ever heard of Kinesio Tape it is similar to that but is more comfortable and can be taken on and off.   The best part of Kai's school is that he loves it!!!   He loves going and is so happy when I pick him up.   He has started babbling and jabbering full force.  To hear him babble and say "mom" or "mo" for more is music to my ears.  
 
Things are going really well for both boys!  I have two very happy and joyful boys.   I feel so priviledged and blessed to be called the mother of these two incredibly special little men.   Lucky me!!


Thursday, October 25, 2012

The Guilty Silent

 I didn't see it coming.  I didn't even know it was still there.   It crept up on me this morning very unexpected.  Those raw, unhealed emotions from fighting to get appropriate services for Kai.  Today I spoke at Kai's former school Northern Voices about our experience in advocating for Kai with the school district.   Two other parents spoke also, but I was the only one that broke down and cried while I spoke.   The tears came so unexpectedly, totally unannounced.   Why am I not done with it?   Kai is getting an appropriate education, I need to move on...but the sadness remains.   What happened to Kai by the school district makes me feel dismayed, discouraged and  disheartened.  My faith in humanity has been ratcheted down several notches since.   I am so saddened when I think about the year that therapist came into our home on a weekly basis and provided services to Kai.   They were able to get to know the wonderful unique him, but chose to do absolutely nothing to help get him appropriate services for his needs.  There was never a voice from any of them to say "Hey, wait a minute this child NEEDS an appropriate education for a child with hearing loss.  This child is not being served correctly and we need to make this right."  There was never a behind closed door support for my position, or support from mother to mother.  I consider every person who sat at Kai's IEP in silence as the Guilty Silent.  The Guilty Silent agreed for him to languish in a room with all non-verbal children that have no hope to ever speak because of the severity of their needs.   Now I wonder if those children have more potential but everybody remained silent and nobody advocated for them.     The hardest part for me is that I had such a deep respect for all of the Guilty Silent therapist that worked with Kai.  Every single one of them is a mom, is a seasoned professional and truly is one of the best in her field.   We have seen both private and public therapist and our school district has the best.   Obviously, being the best at a speciality does not automatically give you a moral compass.   Do you think I am being too harsh???   Perhaps.  
Actually, the root of the sadness doesn't lie in what happened last year, it lies in the future.  These will be the easiest times for Kai in navigating the outside world.   He has a hearing person's voice, my voice speaking for him, he is a beautiful, innocent little child, with an abundance of joy and happiness.  As he grows older he is going to be a vulnerable adult.   Easy for people to prey upon because of his hearing loss, lack of speech, developmental delay and of course his Ataxia.   I'm frightened.  I'm frightened that these people who have held him on their laps, laughed with him, seen him grow could not find the compassion to help him get the services that he so desperately deserved but more importantly needed.    So if  the Guilty Silent couldn't find it in their hearts, how can I ever expect and believe that the rest of the world will be kind to my very special son?  This is where my tears lie...
 
 


Monday, October 22, 2012

Living with Mr. Independent



This post is about the day in the life of a very independent 3 year old named Kai Kai Sweetie Pie.   When Kai hears the radio alarm go off in the morning he turns into the Tanzmanian Devil.   His feet are flying as he kicks off the blankets and jumps out of bed and races over to the alarm clock as if all of us were at his heels...we are not.  He looks back at me and points at me as if to say "don't even think about getting out of that bed!"   (Yes, we are still co-sleeping).  I spend the rest of the day decoding the many mysteries of what I am actually allowed to do for Kai.   If I open the bedroom door and Mr. Independent hasn't blessed me with the priviledge of opening the door for the day, I may get a full blown meltdown or he may look at me directly in my eye and point to himself with both hands, where I automatically voice "Kai Kai do it".   I then shut the door and let Mr. Independent do it himself.   Our morning pretty much continues like this, Kai has to pick out his own diaper, get his own utensils, get his own plate, cut his own food, he is independent to the max!  If I slip up and accidently do something for him that he doesn't want done, he gives me the look, I say "Kai Kai Do it", he goes and does it and we are on good terms again.    If I try to help him with anything, I get either a swat or a fervent headshake no.    He would definitely drive us all to school and has tried to wrestle the car keys from me, but I have won that battle. 
The car seat is my nemesis since he won't let me help him and it takes him forever to get seated and buckled.   I actually build in 10 minutes to our schedule for him to buckle up.   Now his older brother will gladly say "mom will you belt me in?"  I'll say "you are 6 years old, you can belt yourself".   His come back is "I like it so much better when you do it".   I bet he does!!!!   Mr. Independent goes to school happily with a great big smile on his face.    When I go to pick him up he see's me from down the hall and begins to run with his arms out like an airplane to keep his balance and he falls into my arms and gives me his open mouth kiss.  That is one of my favorite moments of the day and I cherish it.  Then he immediately gets back to business of independence and bossying me around.   As we leave the school, he directs me to the doors that I am to walk out which are never the same as him.   He wants to push the automatic door buttons and  open every heavy door.  Lord help me if he see's that I am assisting him in any way, he has to start all over again.   Unloading the dishwasher has become a secret sport.   I try to do it when he is asleep, at school or busy playing.   Otherwise, Mr. Independent  stands on the counter tops with me holding him and I hand him each individual item and he puts it away.   To his credit, he hasn't dropped a piece yet ( I put away all the glasses ).   I know, I know...I am my own worst enemy.   He also helps with the wash, sweeping, vacumming...you name it that kid does it.   It is a blessing that Kai is so independent and wants to do and accomplish so much.  I think it will continue to serve him well.    

Monday, October 15, 2012

Camera Shy Mom's

 
Kai and I enjoying a snack at our favorite restaurant on our lake.

Have you read about all the hub-bub created by the Huffington Post blogging mom who admitted that since having her kids she doesn't ever want to be in front of the camera???   She doesn't want it documented that she hasn't lost her baby weight from giving birth to her 4 kids, that she hasn't combed her hair and her shirt is full of baby food and juice.    Of course I can toss my hat into that ring.  I can add that I dread the day when my kids realize that I am old...older than most of their friends mom's.   But here is the great thing about kids, they love unconditional.   They don't really care if you are fat, skinny, tall or short, young or old, they want to be loved and they want to love you.   Bei recently said to me, "Mom, I wish you could be naked all the time".   Ewwwwww!!!!! Gag!!!!!!!    Totally shocked and dismayed, I said "Why would you say THAT???"   He came over and hugged me and said "Because you're beautiful mom".    Bei see's the beauty within me, not the wrinkles, tired eyes or the muffin top belly.   In a way it has been selfishness/vanity that has kept me from being in front of the camera because I have made it about how I feel about myself.    This article made me realize that as my boys grow older and look back on their lives they deserve to see their history with their mom in it.   I hope you start jumping into those pictures with your kids too!!!

Tuesday, October 9, 2012

Zen and the Art of Housekeeping





 Bei loves getting his face painted!  
Kai loves playing with water!

I had ENORMOUS plans of what I was going to do with all of my free time once the boys were in school.    I was going to join a bible study, work out daily, clean out every drawer, cabinet and closet in my house, begin and complete Kai's life book, print out my previous blog into a hard copy book, volunteer for Love Without Boundaries, volunteer at the boys school, save gobs of money by becoming a coupon extremist and learn to cook like Martha Stewart...BIG, BIG, BIG plans!!!  Well I realized quickly I am very delusional.   None of it is happening...NONE!!!   Instead, I am keeping up with my wash, making a meal in the morning to be served at dinner time, straightening up the house and that is it!  To be fair to myself,  I am cleaning out a drawer/cabinet here or there too.   It is all I accomplish in 4 hours.  I'm pretty much a housekeeping wimp...  Hopefully the boys will grow up to say "my mom wasn't the best housekeeper but she sure did love us".  

Monday, October 1, 2012

Separation Anxiety




 
This little boy makes my heart sing!!! 
Bei's first baseball game 
 
 
A common phrase in the adoption world is 'every adoption starts with a loss'; the loss of the birth family.   Being abandoned multiple times has been traumatic for Bei.   He was approximately one years old when he was left at a hospital.  He spent an entire year in the arms of his loving mother.   Based on our research into Bei's history we believe for the next 15 months he was at the orphanage a short time, fostered and then brought back to the orphanage the week preceeding his adoption.   More abandonment, more trauma...heartbreaking.  
 
Bei battles separation anxiety.  The beginning of the school year was really hard.  Harder yet is that he is embarrassed by it.   As we drove to school the first day he told me "I hate crying in front of my friends."   And he cried hard that day and several days afterwards and still does most Monday's.   He continually asks why Kai is not afraid to leave me when he goes to school?   He articulates to me that he doesn't think that I am coming back, that in the afternoon he really starts to worry that I won't be there to pick him up.   Coming off the weekends have been the toughest for him.  Last year I sought counseling to help me understand and to provide me tools to help build his trust.   Some of the tools were to give him a picture of us together,  I drew him pictures, love letters, I gave him a pair of glasses of mine that he still carries in his backpack.   The most important therapy tool was for us to develop his being born story and how he came to be our child.  I followed what the therapist said but never really understood how it all worked until I came across this book recently called
 
 
 
 
As I started reading this book everything the therapist shared with me fell into place.   This book outlines the neuroscience regarding children's brains.   It explains how children use their right side of their brain, the emotional, passionate, illogical side and how the left logical side of the brain needs to be developed.   The book discusses implicit memories, those that we don't remember but they still affect us, like abandonment versus explicit memories those memories that we record our lives by.    It discusses how imporant integration between the right and left brain are to a healthy mental state.   By putting words to Bei's story we may be able to help him understand the separation anxiety.  For us our story with Bei had always began the day that we adopted him.   He loves to hear how I first saw him while he was in the parking lot and I was in the civil affairs building and he looked up through the window and we made eye contact and I waved to him and said "Hi Bei, Bei".   How I fell madly and deeply and passionately in love with him that first day.   How the entire time we were in China he never let me put him down (I have pictures that prove otherwise, but I am sticking with my story).   How he slept on top of me for the first months, how he would kiss me 50 times in a day.   I really LOVE that little boy with all my HEART and SOUL!   But love is not enough.   He needs to be able to understand and integrate his story.  How do you tell a child that he was left, abandoned by people that are suppose to love you forever and ever?   That there are no options for a large percentage of the worlds population?   That what happened to him was unfair to him, to his birth family, to the Chinese culture?   How do you make a child believe that it won't happen again?   Can I promise him I will never leave him?   What if I die?    I am going to choose my words carefully and thoughtfully about Bei's story.  We need to go back further to the very beginning with a mother who had a baby, a baby that was sick, that was going to die. That she loved that baby so much that she wanted him to live even though it meant that she couldn't be his mommy any longer. She made the most heartwretching but most loving sacrifice that a person could do and she chose life for her child.  I am hoping that we can begin working through some of the trauma that Bei has experienced so that he is able to put this fear of abandonment to rest so it doesn't follow him into adulthood.  
     

Monday, September 24, 2012

Kai's Public School

 
 
 


Kai is into his 3rd week of school and I am so incredibly pleased with it.   The public auditory/oral school is housed in a brand new building along with the Early Childhood Special Education (ECSE)  and the Courage Center which is a  private Pediatric Rehabilitation Center that he attends.   The first week Kai attended school he had new braces fitted for his feet since he out grew the original pair.   His physical therapist from ECSE would go down to his room and remove his braces daily and check his feet for sores.   She taught each of the teachers how to put his braces on properly.   Next week we are going to have Kai wear his Theratog (compression suit) and the ECSE physical therapist will show myself and the teachers how to put it on Kai.   Additionally the ECSE occupational therapist has been showing the teachers the proper way Kai should be sitting so that he can concentrate on learning rather than stabilizing his body.   On Tuesday afternoon's Kai walks from his classroom down the hallway for his private speech therapy at Courage Center.   The collaboration between the three entities is more than I could have dreamed.   With this school the whole child is being treated and I think it has been a fabulous first 3 weeks. 

With that said, there are some things that I need to address with the school regarding Kai's IEP.   Ugh...   To be honest, I dread it, but as I wrote in my previous emails regarding IEP's I am his advocate and I need to hold the school accountable to follow the IEP.   It is such a critical time right now for Kai regarding speech and I want to make sure that he is pushed in his expressive language. 

Sidenote:   My computer died...funny... how a glass of lemonade and electronics don't mix...oops.   Pictures may be a little scarce until I get a new computer.   This old computer wants to load all 677 of my pix from my disc and doesn't provide an option to pick and choose the latest pictures.  That is probably the most expensive lemonade I ever poured...

  

Tuesday, September 18, 2012

Redemption




My dad meeting Bei for the first time when we first came home from China.
   The things that I inherited from my dad are his blues eyes, the rest of my siblings have green eyes like my mom.   His thin build.  His curly hair and unfortunately circles and bags under my eyes...rats on that one!

Several months ago when I heard Whitney Houston died my first thought was "Oh no, there is no redemption for Whitney".   I thought of all the wrongs that she had committed against her child Bobbi Kristina, all the pain that she caused her, all the wretched awful things that Bobbi Kristina had witnessed, the raw open wounds of her heart and spirit, all due to her mother's drug addiction.   I feel sad because now that Whitney is dead there is no way to right those wrongs for her daughter.   Why does this story resonate so strongly with me you may wonder?   My dad was an alcoholic.   Without going into too much detail, I will share with you that my first memories of my dad were of violence.  Waking up to punched holes in the door or walls, walking on eggshells because you never knew what the trigger was that was going to set him off.   I lived in fear of my father.   The ability for him to show love and be kind at times never offset for me the times of violence.   Even as a child I could not reconcile how a person could show love to his children and I believe our dad really loved us, but then in another moment physically harm his children.   For me it meant a childhood of keeping my head down low and walking wide circles around my dad.    Alcoholism is an insidious disease and this was not the person who God had intended my father to be.  In the early years my dad was what would be called a "functioning alcoholic", eventually his alcoholism took over his life and he was no longer able to keep a home or a job.  In the height of my father's alcoholism after losing his wife, the respect of his children, his job, his house, (and alot more happened which I won't devulge), my father stopped drinking.   Cold turkey!!!   He did it!   He is lucky he didn't have a seizure and die but I believe God had plans for him.  My father went on to remarry, hold down a good job and build a new life for himself without alcohol.   Slowly but surely, he and I started to build our relationship.   We found common ground, things that we both liked to talk about, traveling, politics, music and books.   I watched my dad in his new family be a wonderful father figure to his step-children and his grandchildren.   The type of father that I would have LOVED to have, someone who encouraged and inspired them to challenge themselves to be the best that they could be.  You may have thought I felt envy or jealousy towards his new family, but I never did.   My dad never said he was sorry about the alcoholism or the  abuse, but for me those would be mere words, they wouldn't change anything that happened.   Instead my dad gave me a greater gift, he allowed me to sit front and center and watch the meaning of life which I believe is a life of redemption.   Isn't that why Jesus died on the cross for us?   I watched this man who truly had hit rock bottom, pull himself up with his own bootstraps and move forward and live a Godly life.    I am proud of what he did and who he became. 


My dad died a year ago this past March 23rd and his birthday was yesterday, September 17th.   He would have been 75 years old.  I miss him.  My dad became someone who I enjoyed and I wanted him to be a part of my life.  He LOVED the blog.  We would talk about every two weeks on the phone and I don't remember an occasion when we didn't laugh at some point of the conversation.   Miss you dad and thank you for getting sober...it meant everything!!!!!!!!!!

Monday, September 10, 2012

Hope

 
It is amazing how much your life can change in a few months.   Today, this little boy started full time school at the PUBLIC Auditory/Oral School which is now located a few blocks from Bei's school.   I am so incredibly excited about the curriculum and how his school day is structured! 
 


  Four months ago I still felt like I was in quicksand.  Every waking moment was consumed by my concern for Kai.   Was I doing everything I possibly could to help my Sweetie Pie get unlocked, so that he could communicate and live an independent and successful life?   Over the summer I saw so much development, so much hope for Kai's future.   I heard Kai say words like "mom", "no", "under", "bubble", "dog", not consistently, but it gives me hope.   I consistently see Kai accurately choose the letter A, M, T, B and H from a phonics IPAD application.   I see Kai choose the blue color or the red color when he was asked.  I see a little boy who wants to play and was willing to go and engage his older brother.   I see a little boy that wants to use his hands to communicate, who felt pride when he discovered a new word in signing.    I see a little boy who is willing to fight and fight hard for everything he gets.   As Kai continues to unveil himself to us, I have so much hope for his future. 

Tuesday, September 4, 2012

Pacer Center - Champions for Children with Disabilities

Recently I was given the priviledge to share our story with Pacer so that they could use it to help educate other parents on how to advocate for their child.   You will have to scroll down a bit to see the video.   You can enlarge it by clicking on the lower right hand corner where it looks like four corners.   Here is my personal comment...(Please God let those large circles under my eyes be from not sleeping for two years and not old age!!)


Click on PACER’s Early Childhood website   Pacer Early Education Advocacy Site

 

Sunday, September 2, 2012

"ALL DONE"

 This is Kai's "All Done" sign

 
 

Several months ago I realized that Kai needs a way to communicate to other people.   As I have mentioned in previous post, forming words is difficult for him.     I have been working hard to try to sign with him as much as I possibly can and he is catching on to it.   His most recent sign is “Medicine”.   He will sign medicine and remind ME in the morning that he has to take it.   Another sign that he recently mastered is "eat".   He looks me directly in the eye with a little cutie smirk signing "eat" and making sure that I sign back to him.  You can tell he is bursting with pride.   He loves for me to sign him the alphabet and to count up to ten.  I have been teaching myself sign language through the Signing Times DVD’s.   I have taken one class previously that taught the first 100 words that a child signs.   I am also going to take a class in the fall that is taught by the Metro Deaf School.   The fact of the matter is that I need to immerse myself/our family into the Deaf Culture if we are ever going to use American Sign Language fluently.   We need to begin going to Deaf events and surrounding ourselves with people that use American Sign Language. To be honest, getting involved with the Deaf community is so out of my comfort zone that I have to push myself to get involved in the events.   My analogy I thought of is if one day you woke up and realized, in order to communicate with your child you need to become involved with the Hmong community.   The first thing you need to do is find out where the events in the community are and find that person that is willing to take the time with you and your extremely poor and sometimes unrecognizable language as you try to speak Hmong.   All while you are trying not to insult their culture since you know very little of their social norms.  

 I'm nervous/scared of the unknown of getting involved in the Deaf community, however, I believe the return will be ten-fold for Kai's development, our relationship and his overall success.   



Tuesday, August 28, 2012

1st Grade Here I Come!!!



 



 
This little boy is starting first grade tomorrow!!   He has anxiety about it, but he will do well.   Today we met his teacher and found out that she has two adopted boys from Liberia...how awesome is that?   We have had a wonderful summer!   It has gone by fast.   All summer long I have been emphasizing to Bei ALL that he has accomplished!   You should see that little boy do cartwheels!  handstands!  he dives from the swim platform like a 13 year old kid, he sat on his two wheel bike for the first time this summer and immediately started riding without any assistance from me, and that little guy can hit a ball OUT OF THE PARK or in our world across the driveway!   Bei is not ready to be in any organized activities but I want him to realize all the things that he has accomplished on his own.   I am so proud of him!!!  Kai had summer school during the month of July which meant that Bei and I had what he termed as "mama time".    He and I spent several days at the zoo, mini golfing and swimming at the local lake!   We had some much needed time just the two of us.   Sad the summer is coming to a close but I have to admit that I am ready for some structure back into our routine. 

Sunday, August 26, 2012

Ordinary Miracles

 
 
After John O'Connor asked to write on my blog I thought I would extend an invitation to my favorite blogger, Nancy from Ordinary Miracles.    I only read a hand full of blogs these days and Nancy's is always the first one that I check on a daily basis.   I like her blog because she is so authentic and really tells it how it is, the good, the bad and the ugly.  Plus her photography blows me away!  Anyway, I threw out several suggestions for her to write about and instead of picking "what is your favorite color of the rainbow and why?" (just kidding, of course)  in true authentic Nancy fashion she went for the meatiest of all my suggestions - How do other mom's regenerate themselves when they are feeling tired and run down?   I love her answer(s) to my question and hope you enjoy it too.
 
 
 
Liz wrote and asked,


How do you refresh yourself when you get in to a parenting slump? I am kind of in one now where I feel weary and beaten down a little and I don’t get a break. I always wonder how other moms refresh themselves.


Keeping it real, my knee jerk reaction to Liz's question is... You mean we can refresh ourselves? Who would've thunk? Sign me up! I want me some of that! Just tell me where they're selling it, 'cause I'm gonna buy bucket loads!

I am the epitome of weary and beaten down these days.

A break?

What's that all about?

Huh?


Currently I am definitely feeling weary.

And tired.

Beaten down.

With no break in sight.


Which of course leads to...

Feeling cranky.

And snarky.

Overly sensitive.

Argumentative.

Guilt ridden.

And generally not real fun to be around.

I am totally aware that I wouldn't even want to be in the same house as me right now.

But somebody has to do the important stuff like make the PB&Js and clean the pee off the seat so here I still am.


Settling back into reality and our busy lives after our summer stint at Little Cabin in the Woods, is always a tough transition for me. For various reasons, I'm not getting much sleep these days. Jude spilled $16 worth of trail mix on the floor. Sunny locked her keys in her car. One of the dogs jumped up on the counter and ate lunch. Patch started throwing up this morning... only after I thought he was trying to pull a fast one. Papa is out of town on business. The dust bunnies are taking over, not to mention the fingerprints. Miscellaneous other children who shall remain nameless are about to drive me over the edge. It has been no less than 251 degrees outside for months now, and my dishwasher hasn't worked in over 2 years!

But as much as I'd love to blame it on something, I'm the only one to blame.

Because I'm the only one who has the power to change my state of mind.


You know I'm writing this stuff down more for myself as anything else, right?


Long story short... I find myself tired, weary, and beaten down more often than I'd like to admit.

I used to think that perfect mamas didn't feel this way. And maybe I still do I mean. We're not suppose to admit how hard it is and that being a mama has the better of us. Mamas are suppose to be happy and loving all the time... right? We're suppose to be loving our job and so totally satisfiedXXXXXXx

But I'm old enough to realize that perfect mama doesn't exist, and we all find ourselves in a bad frame of mind occasionally.

But here's my light bulb moment that I've known all along, but only come to recently appreciate---It's all about what I do with our reaction to being tired and weary that matters.

After all, that's the stuff that I want to role model to my kids anyway. I've been preaching to my children for years now. We can't control your world, just our reaction to it.

So why shouldn't I take my own advice?


Truth be told, I don't think there is a quick fix for mama burn out. At least I've never found one. A weekend away or a massage is great, but I find that the thing that contributed to my burn out, which is almost always me anyway, is still right there when I get back. I think it's more a matter of how we mamas live our days and how we deal with that built-in stresses of being a mom. But Liz, I'm a linear kind of gal that loves me some practical suggestions! So rather than look for a quick fix that will likely lead me right back to where I started, it works better for me to have strategies in place all the time to help deal with the stresses of being a mama 24/7.



So, Liz, I know this isn't quite what you meant. Being a mom is tough work, and if there was a magic refresher pill, I'd be an addict by now. But this really is what I try to do and take into consideration when I'm feeling "weary and beaten down a little and I don’t get a break."



1) Pray. No matter how bad it gets, I know I'm not in this alone. God, who loves me more than I can imagine and has my back, is always my confidant, biggest cheerleader, and best advice giver. And He has already given me absolutely every single thing that I need to be the best mama, better than any other woman, to my children. If I can put my faith in this, (and that's easier said than done) the rest is gravy.


2) Do what you love. I love photography. Photography has the power to whisk me away to another world. When things are getting stressful, (and by stressful I mean that Boo is terrorizing the screeching younger children) I often pull out my camera simply because it makes me happy. Even better if I can include my children in what makes me happy. Sometimes we go on a "photo safari," or I use the occasion to take early (or late) birthday pics of one of the kiddos. Perhaps you love reading, knitting, writing, painting, craft projects, or geo-cashing. Do something you love when parenting is getting the best of you, and if you can get the children involved in it, then it's a win-win solution for all!


3) It's ok to hide. Sometimes I know when my mood is turning. But sometimes it's Papa that's the first to notice my beaten-down demeanor. Isn't it funny how often we moms don't even know how weary we're getting? When Papa notices this, he might suggest that I go get a pedicure, take a little nap, enjoy a bath, or just go away somewhere alone. No matter who notices it, 20-30 minutes alone with just my thoughts is an amazing refresher that can restore my perspective.


4) Change the scenery. Go grocery shopping. Run to the bank. Drop off those hand-me-downs. If you're anything like me, there's a list a mile long of errands that need to be run anyway. And while you're at it, put on the comedy station in the minivan to release those endorphin and change your mindset. A change of scenery can can kill two birds with one stone! There was a particularity difficult season in my life many years ago, when I would plead to run all errands anytime of day, just so I could get away in the car and listen to comedy radio. It didn't solve any problems, but during that season, it helped keep me sane.



5) Keep your marriage strong. Keeping a marriage healthy is work. In the 21 years Papa and I have been married it has definitely gone through different seasons with trials, smooth sailing, and everything in between. But all the while we work on it. We try to have "date night" at least once a week, even if it's just to the grocery store. We have become big fans of Applebee's (only a few minutes from our house) 2 for $20 on a weeknight after the younger children have gone to bed. A weekend away alone at least once per year is a priority. We have rules for fighting fair. And a strong marriage is pretty much a necessity for co-parenting.


6) Seek out your closest girlfriends. I have 3 women in my life I trust completely. They know my secrets. We have similar ideals and values, although age doesn't seem to matter. They know my faults and even my children's faults and still love all of us unconditionally. I work at these 3 relationships much like I work at keeping my marriage healthy. And when we get together, which we make sure happens regularly, we discuss the tough stuff as well as the celebrations. I can call any one of them up any time with any issue and often do. And they do the same with me. A sounding board that loves you and has your back, does a world of wonders.


7) Say your sorry, and keep your big "but" out of it. No matter what, there are those moments when I mess up big time. I yell. I say the wrong thing. I lose my temper. And countless other sins. You know the ones, the times you regret and can never take back. My children deserve to hear sorry on these occasions. So I suck it up and apologize, and be sure to do it without a big "but." None of "I'm sorry I yelled, but you know that you need to clean you room." 'Cause a real apologies don't have a but in it.


8) Get some sleep. One thing I know about myself is that if I'm not getting enough sleep, (which let's be honest, happens quite frequently with young children in the house!) I can be a bear. So a power nap (30 minutes max, or I just can't seem to wake up afterwards) when Mimi is napping helps so so much. I've long gotten over feeling guilty about sleeping midday. I try to go to bed early when I didn't sleep well the night before. A happy, well-rested mama is worth more than a load of folded laundry or clean dishes any day!


9) We've now come to the TMI portion of the blog... consider what time of the month it is. I know there are a few days each month that find me particularity... what's the technical word for it... whackadoodle emotionally sensitive. I know it's not this way for all women, but for me it definitely happens. During these days, I try to keep my head down. I try not to confront the big stuff. If there are any issues that need to be addressed, I differ the discussion a few days. There's nothing here that says to dismiss my feelings, but hormones can play a real role in a woman's state of mind so I might as well acknowledge and deal with it.


So there you have it.

Does it always work? Nope.

Do I always remember to do this? Not even close.

Do I still get tired and weary? Totally.

Do I make mistakes? Oh yea.

Is it easy? No way!

But do I try to do better? Absolutely.

Does it help to have a plan? For sure!

Am I still learning from my mistakes? Yep.

'Cause there really isn't a better alternative for my family and me.

I've told myself this mantra countless times, Do the best you can do with what you have at the time. And give the rest rest to God.

'Cause in the end, that's all we really have anyway.



NANCY



 


Saturday, August 25, 2012

Life Time Friends

 Chloe and Bei are reunited again.   Chloe was adopted from the same orphanage as Bei.

 We feel fortunate that the J family is willing to drive the 7 hours north to spend a long weekend with us.


There were alot of smiles and laughter all weekend.


 Bei's cousin's even got into the action.

Frog hunting was one of the biggest sports of the weekend!
 
 
Within 30 minutes of the kids playing together, Bei crawled up on my lap and said "I wish I could live with them."   I bet he does!!!  Five kids to play with and two of the nicest people you could ever meet for parents.   Sorry kid...you are stuck with us!!   The kids really got along well and kept themselves very busy when we weren't on the water.   The week after the J's left, Bei told me this story with GREAT INDIGNATION at least twice a day until I pointed out the illogic in his argument.   "Mom, you know the little girl with the long hair??  Ya Bei, Minah?  Ya her...she wasn't nice to me when I was mean to her!!  OH REALLY?!?!  When I finally questioned him about why he was being mean to her, he walked away and hasn't mentioned it since.   Hopefully, he wasn't too mean to her, but if anybody can take care of herself, it is Minah...she is a spitfire.   Once again she made me laugh alot.   The J's blog is www.talesof2princesses.blogspot.com

Wednesday, August 22, 2012

H2O Times

 Kai excited that he finally gets to wield the hose at his brother!

 Fortunately Bei is a BIG ham and really puts a show on for Kai

 If only Kai could reach Bei
 
 Regardless of how much water is really hitting Bei, it delights Kai...look at that clenched hand!



 How exactly are you doing that Big brother?

Let me give it the no hand try!
 


This little sweetie pie starts school next week already!
 


Wednesday, August 15, 2012

IEP Lessons - Part 2






This is the second part to my IEP post titled "Equal Rights."   These are just some of the things that I have learned through my experience with our school district. 
1.        Understanding  Your Role as an Advocate

·         It is not only our duty and obligation, but also our honor and priviledge to be the voice for our children.   There may be some stressful times, pressure filled meetings but it is imperative that we fight for the education that our special children deserve.

·         We need to direct our children’s education.   The IEP team can provide their expertise but you are the ultimate decision maker regarding his/her education.

·         We have our children’s best interest in mind.   The rest of the IEP team has 40 other students on their mind. 

·         By researching the most current methodologies, theories and curriculums, you will gain a knowledge base about how children with your child’s special need learn.

·         Understand the basic premise behind special education, which is the fact that the school district has to service our children with their unique special need.   They are not allowed to lump him in a classroom because they don’t have the right services available.   It is our job to hold the school district accountable.

·         Observe any classroom placement prior to agreeing to it. 

·         Have high expectations for our children and their IEP goals.

·         Ask for a copy of our children’s school district file on an annual basis.

·         Asks lots of questions and follow up to make sure that all questions are answered.



2.       Be Prepared

·         Use the assessments and evaluations conducted by the school district to build your argument.  

·         Write out your expected outcomes or goal for the meeting.  

·         Put together your thoughts in written form so that you can stay organized during the meeting.  

·         One of the best tools is to write out the timeline of every important event conducted by the school district starting with the evaluation, up until the current meeting.  The timeline will provide a big picture in addition to getting your facts and dates together.    

·          If you feel that the meeting will be contentious practice verbally ahead of time, even trying to predict what the school districts rebuttal will be to your request.   

·         Determine your emotional state of mind prior to going into the meeting.   (At one of our meetings that we knew was going to be especially contentious we decided that we would not refute anything said to goad us into an emotional debate, we stayed with the facts and ignored emotional comments made by the school personnel).

·          Have a friend come in and take notes during the meeting due to the large amount of information being passed back and forth between the school and parents.  

·         Follow up with the meeting with an email recapping what you thought you heard in the meeting and the stated outcomes.

3.       Understand the Legal Process of the IEP

There is an entire legal process that the school district needs to follow to meet our children’s special educational needs.   We need to know and understand the IEP process and what the school district is required to do to conduct the IEP, including the legal time frames and the denial process if we request a service and it is denied by the school.   Additionally, we need to familiarize ourselves with the IEP terminology such as Prior Written Notice, direct and indirect services, etc.



4.        Know Our Children’s Rights Under the Disability Law

Under the Individual with Disabilities Education Act (IDEA), there are 4 basic rights granted to children with special educational needs.  Know these and understand how they are applied to the to the individual educational plan; 

·         Free Access to a Public Education (FAPE) – Under this right the school district has to provide free access to an appropriate public education.   The school district is not required to provide the best public education, it only has to be appropriate.  

·         Least Restrictive Environment (LRE) – Students have a right to be with non-disabled children.   For some of us the LRE is having our children with other children like them such as hearing impaired children.    This right also includes that disabled children also should have access to any general education curriculum that is afforded a non-disabled child.

·         Supplementary Aids and Services – Aids and services to help a disabled child obtain success in ac classroom.

·         Assessments – evaluation of your child with quantifiable measures.

A great website to learn your rights is called www. wrightslaw.com



5.        Don’t Be Afraid To Ask for Help

If you think that your child should be receiving services granted under the IDEA, contact an advocacy group.   Their responsibility is to;

·         Teach us our rights under the law.

·         Train us how to be advocates for our children

·         Increase our expectations for our children.

·         Support us at IEP meetings when necessary.