Saturday, April 20, 2013


 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.