Namaste

Namaste, "I bow to you",  is a greeting we use when doing yoga.  Hi, Peace, Good day... it means whatever you like it to mean, but the official meaning of Namaste is "I bow to you".

I started doing yoga about 7 years ago and immediately took to it!  I loved the feel of such control over my body.  The way I could feel each muscle move and hold during a position.  The joy of a good stretch of muscle tissue while breathing deep makes me feel so alive.

I loved my yoga practice so much that I started leading a yoga group with a coworker at the school district I taught.  It was so great to practice yoga with others and help them find the joy in full body awareness.  I even taught a summer school yoga and creative movement class for elementary kids!  I loved it!

My yoga days took a stand still when life got crazy- I  got engaged, moved, sold my house, started a new job, got married, pregnant, got in a major car accident,  healed, had Roa, bought a house and moved,...

I wanted to be one of those "yoga-moms-to-be"- proudly displaying my baby belly while in Warrior pose.  I wanted to do yoga with my newborn, cradling him lovingly while I stood strong in Tree.

However, life took a different turn for this Yogi.  I not only suffered such morning sickness throughout the pregnancy but I went through such pain and a long recovery after the car accident.  After Roa was born, cradling him lovingly in Tree pose was impossible as he arched and screamed and refluxed.  I even tried some yoga poses to help calm him and I for a few days, but the stress took over my tired body and I gave up.

Ironically, my son is the polar opposite of the nature of yoga.  He has limited body awareness, he struggles with muscle control, a good stretch  and massage in our eyes seems to cause him discomfort.  How could God give me a child who can not comprehend the power of yoga??

But, I am know seeing that God has a plan.  He has put in my path Conductive Education, the Methods of Anat Baniel, Craniosacral therapy.  I am reading and studying movement again and last week started a Anat Baniel course meeting every Wednesday night!  I am looking at muscles in a whole new light!

This Yogi is moving again, breathing again, beginning my yoga practice again- 3 days a week.
AND the beauty is, I'm taking my Roa WITH me on this ride of body awareness.  I am stopping feeling bad about his lack of control and guiding him through self discovery with the help of so many great therapists!

Namaste!  I bow to you, my beloved Roa!

Thoughts on Isolation

One of the blogs I follow, "5 Minutes for Special Needs", posted on the topic of  isolation.  Today was one of those days when I pondered this feeling of being alone.

Roa and I are joined at the hip, it seems. So, I am never truly alone. However, I feel very isolated in other ways.
I have daily visitors- armed with therapy balls, wedges, equipment and toys for distraction.  I get out of the house to visit additional therapists, the toddler classroom, or stores with all of that equipment and toys for distraction.  Occasionally, I take a little guilty ME time and go out for dinner with friends, or Bryan and I will get out for a date, but overall, it is just.. The King and I.

Even on the days that I am surrounded by other parents of toddlers, family or friends.  There is that sense of separation.  The Unicorn among the horses, if you will.  No one  in our circle of life can fully grasp the day in and day out living Cerebral Palsy. 

Those that attempt to ask questions and want to be apart of it, many times do so with caution--How do I ask this question, how can I appear knowledgeable and interested, what can I talk about that doesn't offend?
Others just flat out don't ask and aren't interested.  It is those family and friends that we find ourselves distant from.  Not because they don't focus simply on Roa in our conversations, but because they do not acknowledge our grief, hope, and ambitions while living this unwelcomed life of reality. Living Cerebral Palsy.

On the other hand, we have great friends and family who participate in our life such kindness and caring.  Who jump up and down with us when Roa does a GREAT feat, no matter how small.  
But... they also share with me their child's accomplishments and latest milestones sometimes with a tone of guilt or sometimes with such pride and joy.  Either way they share, once again,... I am at the place..... Isolation.  Separate.

Even in every day life, such as Roa's first visit to Burger King last Saturday.  Roa attempted to sit in the restaurant high chair, wear his Burger King crown, and carefully balance his little body while eating the first fast food french fry of his life...  We were set apart.  Viewed from onlookers as different.

The Unicorn waiting to be like the rest of the horses.....

A Unicorn is a majestic beast, however.  One that is used to standing tall and doing it's own thing.  One that is accustomed to being Isolated and viewed in a different way.  Isolation leads to self reflection, after all.  Self reflection  leads to the desire to better yourself by helping others in life understand differences. Embrace others and focus outside the corral of horses.

So, we will embrace Isolation for today,... the King and I.  and carry on living Cerebral Palsy.

Roa and his block work

Check out the squat to stand, rotate and reach action of our guy!  He is a champ!

Hodgepodge of thoughts and the ramblings of a mom with spring fever

Roa loves sledding!  Not a big surprise, really however he looks unbelieveably precious in that sled with Daddy, sailing down the hill in our backyard.  (Don't fret- pictures soon!) 
It is finally that time in the Minnesota winter season when we can play outdoors without freezing our tails off!  Roa was very happy to get his little behind planted in that swing again while Max and Molly chase each other around the yard.

It was a busy weekend for the Thayers.  Conductive Ed on Saturday, errand running, church, and lots of backyard play.  Conductive Ed continues to be both the highlight and  a stressor in our weekend.  It is truly a wonderful session to work on every developmental skill for Roa.  Ors is great and Roa enjoys his singing and entertaining during the activities.  The stress?  Roa's Saturday nap and meal time is all mixed up and the day gets a little rough, but we will cope! 
**If any of you Conductors reading this know of any literature worth reading on the subject of Conductive Education, please share with me!  I'm still looking to locate a full copy of Dina to purchase!

We have taken a break from our hyperbaric chamber time and are ready to get back into that routine.  With Bryan traveling for work and Roa's little bout of cold and cough, it was a necessary break, but now we want to get back in the game.

King Roa has been making some nice little gains as of late.  Besides cruising around in his gait trainer, we have been doing a MAJOR focus on floor time, tummy time, and body awareness.  I have been doing alot of research and practice with the Anat Baniel Method along with our practioner, Neue.  The methods she has been sharing (along with our Conductive Ed,  aquatic, craniosacral, OT, and PT routine) seem to be making something "click".  Roa tolerates being on his stomach now during play for longer periods of time.  He also is building arm, shoulder and neck strength nicely.
Standing in play is still Roa's favorite and we allow this time for him to do his own thing.  Last week, Roa took his FIRST step to the side to reach a toy on the ottoman.  He also slides down the side of the ottoman to reach out for the floor and get on all fours with some stability assistance!   Tiny baby steps towards... INDEPENDENCE!

A few of you wonderful readers had commented by blog or email about our crazy busy therapy schedule.  Yes, we do have a full week of adventures for Roa.  However, to him, it is all about play and interacting with anothers.  Bryan and I have shared our philosophy of "Learning through Play" with all of Roa's therapists and they are doing a great job of providing toys and experiences in a playful setting.

Is it stressful for Bryan and I to have such a busy load?  Yes, honestly it is.  However, what else can we do when the pride and joy of our life struggles so with movement, communication, self help skills, etc?  We have nothing but drive, determination, and hope that guide us each day through our busy routine. 
I know that each method of therapy thinks that it is THE ONE to help a child with CP.  However, it is definitely not a one size fits all world of special needs.  We are testing out all that we can, discussing which seems to be the best fit for Roa and will go from there.

 Roa is 20 months and has come so far in a year with all the things we are doing!  How can we take something away when all we have is hope for continued progress?  Which therapy is helping most?  We don't care right now... as long as we see change and Roa continues to laugh and smile.

Play Time revisited!

Everyone likes to play.  Adults, children, moms, dads, teenagers, grandparents... everyone plays something.  We play videogames, boardgames, cards.  We play sports- hockey, volleyball, golf...  In college, we played drinking games.  As parents in a car, we play "I Spy".  We play along with the Price is Right and Wheel of Fortune.  America is tops in the world of "Reality" play- Whose gonna win the race, which bachelorette will get the rose?....
Living in a society of such a playful focus, it surprises me how difficult it is to find adults that actually PLAY with children.   "Go Play".  "Find something to play with!",  busy parents mutter as they try to finish household tasks.  If they would only realize that many times those basic home chores could be completed with a song and a game involving their child.  This would free up time to actually PLAY together.

One of the blogs I follow (To the Max) along with Team Inspire- a networking website for Special Needs is  sponsoring a discussion and give-away contest focused on activities and play for children.  What a great topic!  I know I get on a soapbox on this subject, given my thesis of learning through play, but don't you agree that it be great if everyone took a moment to have some fun, create, sing, and get involved with an activity for the sake of a child?

At Roa's ECFE class two weeks ago, I had the pleasure of joining the children during playtime instead of exiting for the Parent group component of the class.  It is a room of 10 toddlers and two teacher assistants.  The assistance do a nice job of keeping the kids safe, getting down toys from shelves,  blowing bubbles, and comforting those who miss their mommies.  But, as I sat in the block area rolling cars down a mountain.... VROOMMM and CRASH!....  Bane and Chandler squealed with joy as I actively joined in the play. They watch intently as I help Roa grasp a toy bus and move it through the tunnel with "The Wheels on the Bus" as the soundtrack I provide. Meanwhile, the teacher assistants looked at me like I'm cracked!

I have always loved to play with little ones.  Love watching their eyes light up with new discoveries. 
Have we as adults lost that ability to make learning fun? Are we embarrassed to be caught in a childish game?   Are we just there to provide the new toy, set up a playroom, and go about our own business?

My Roa could not have accomplished the goals we have worked diligiently on without the playful approach of Mom and Dad, family, and many of his therapists.  When trying to introduce a task without a play approach, Roa rebels!  We create homemade toys, we make up songs to go with tasks, we play I SPY as we stretch and move in new positions.   Putting a toy in front of him is simply not enough. 

But, isn't that true for every child?

First round of CE

Saturday was our first official session with Ors and Conductive Education.  Bryan and I were very happy with how Roa responded to it.   Why did Rojo like it?
First of all, there is alot of singing... Scores Big points with King Roa!  Also, Ors is such a nice guy and that accent of his really gets Roa's attention.  I think it is also great to have a man involved with fun time work, besides Daddy. 
Next positive is the steady pace, moving from one position to another in a neat orderly fashion.  Everything  we did from standing up to sitting down, from reaching to turning the head,...had a little transitional song.  Once again,... King Roa got his music fix.  Lastly,  there were many tasks that involved a rhythmic beat- shakers, clapping,... Roa loved it all.

He got a little fussy when hungry, but the beauty of CE is that we also worked on feeding and positioning during mealtime.  Every move we made, from snack table to the play area was goal centered on correct movement and positioning his body.  As parents, it really makes you think about all of the teachable moments we need to take advantage of.

The only negative of our experience was the time and travel.  It is about a 40 minute drive to the center.  Add 40 minutes back and the 1 1/2 hour session and it was our whole day.  This would be completely okay if Roa would sleep in the car, but he has never been a traveling sleeper.  But he has mastered the skill of being a most CRANKY traveler!   So, nap time was early and a cat nap was late so bed time was postponed and our night was HELL with frequent wake ups.  We will take the good with the bad.

Free wheeling

Here is Roa's gait trainer action.  It is the best taping of him on the go that I've filmed thus far. Since the taping, he has mastered getting over the bumps of the door frame and rugs.  He even is handling some corners  Also, I no longer have to yell at him like a crazy momma and stomp my feet to get him going.  (I suggest the volume turned off while viewing!)