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!



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!! 

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. 

 



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. 



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.

 

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.       

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.