Thursday, February 25, 2010

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?

Monday, February 22, 2010

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.

Tuesday, February 16, 2010

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!)

I Saw The Sign

The visit with the "functional neurologist" aka chiropractor studying for his Diplomate in Neurology, yesterday was quite a waste of our time.  However, I needed to chat with him to rule it out... give it a good look... feel with my mommy's gut that he could not help our Roa.

 The first sign-When you enter the one room therapy center and are greeted by the receptionist who instructs you to have a seat as she is so "busy", and  you look around to see 2 employees chatting, 1 client waiting, and 1 client involved in some sort of therapeutic method involving a chair, headphones, and magazine.... you wonder why you are there to wait. 
 I had filled out their lengthy intake forms and watched their dry videos of the doctor speaking on the brain prior to our consultation meeting as strictly instructed. The receptionist made me sign additional forms while I juggled my active Roa and then... we waited... 20 minutes, as the doctor chatted with a client in his little office off the therapy room. 
The two employees and the receptionist chattered away, pausing to watch me walk around the room, hunched over with King Roa kicking his ball.  There were no toys or objects of interest for Roa to be seen.
 2- Another "why am I here" sign.
When the doctor finally came to greet us, he shook my hand but gave just a glance to Roa.  Sign number 3.
We went to his office and he preceded to ask, "So, what questions do you have for me?"

"Well, I'm curious and wanted to meet with you today to see if you could help my son.  I saw your add in the paper, have been reading on the treatments of brain injury and so wanted to see what your program would look like for Roa."  I stated.

Well, with cerebral palsy there is no cure. It is something that he will have to live with. There are many things we can do to work with him but it would take us being very persistent and aggressive...3 times a week.... and many off the things we can do here he is just to young for....yada yada yada... punch   jab   stab    your   heart...

He asked me if I was familiar with the works of Glenn Dowan and the,  I told him, yes, I am reading their book on brain injury.  He looked shocked and unbelieving and then went on to tell me that he follows their methods, but that they are hard on a family ...necessary follow through daily.... patterning.... incline plane for crawling....  yada yada yada... church involvement for support of methods.....hardship and possible divorce...

Man, does this guy know how to bring you down without selling his program ONE bit!  HUGE FLASHING SIGN 4!

Funny thing, while Doctor Downer was lecturing away, Rojo was smiling up at him,  drinking from his sippy cup and kicking his ball with me in tow around the tiny office space.  Roa seemed to be laughing as if thinking, Why are we listening to THIS, Momma?  We should be playing!  
Final sign- we are outda here!

Brain based therapy, so very close to home, ruled out.  Checked from list.

There are many people out there in our world whose method WILL work for you given this that and the other.  I continue to sort, dig, pick and choose.   

Meanwhile, Roa continues to smile, laugh, and kick his ball, with me in tow,  all round the offices of  "The Land of Know".

Monday, February 15, 2010

The Land of Know...

I had a lengthy discussion with Roa's physical therapist, Mary, about his disheartening MRI results, therapy goals, and alternative therapy ideas.  It felt good to share, bounce off ideas, cry, and vent to Mary.  Mary has her doctorate in PT.  She worked specifically with peds. to get her pediatric certificate.  I value Mary's opinion and her experiences working with tots with motor delays.
We discussed in length Roa's struggles, my fears of the MRI results, our search for help for Roa. 
Mary shared with me that MRIs are fairly new to the world of CP.  She said in her 20+years, MRIs usually were performed if the child had concerns such as seizures.  In one case, Mary worked with a little guy who was walking with a walker and talking before an MRI, performed due to onset of seizures, revealed that a large portion of the white matter in the left hemisphere of his brain just didn't exist.   I NEEDED to hear a story like that!
Mary doesn't want us give up on traditional PT.  She is highly motivated to get Roa walking.  We want to do the very best for Roa and are pursuing all options in therapies.  It makes for a busy schedule, but we will continue to go above and beyond for our boy.

So, our schedule looks as- 
Sunday/ day off for church and family time  
Monday/OT homebased and aquatic therapy with Dad at Courage Center
Tuesday/ Anat Baniel Method therapy homebased  
Wednesday/ ECFE school group with EI teacher and  afternoon Craniosacral therapy homebased  
Thursday/PT homebased   
Friday/ Momma therapy day! and Speech therapy once per month or PT at Courage Center once per month 
Saturday/ Conductive Education group in at the Plus Center and aquatic therapy at Courage Center
--Three nights per week- Hyperbaric Oxygen Therapy homebased
**Chiropractic adjustment every 2 weeks with Dr. John

I have had such great response from parents and conductors in the world of Conductive Education.  I am very intrigued.  We are starting with a once a week trial of the program as recommended by Ors at the Plus Center.  I will follow through with methods at home and see how it looks for Roa and we will go from there.

Today, Roa and I are off to the Upper Room Wellness, a center that offers Brain-Based Therapy for a variety of conditions including, Depression, ADHD, Autism and CP.  This is just a consultation to see what ideas they have for a toddler with CP.  Like most of my discoveries, they do not have alot of  experience with someone as young as Roa, but are willing to check him out.  Wish us luck!

Oh and.... check out the video of our boy on the move in his gait trainer. He is as happy as a clam to move on his own and be chased by Mom and Dad!

Sunday, February 14, 2010

Shopping intently.... dreaming of spring and outdoor play.

Wednesday, February 10, 2010

Conductors Conductors Everywhere!

When checking my blog today I was surprised to have such a wonderful response from the world of Conductive Education.  Conductors Unite!  You great people really believe in your work and should be commended for that!  Thank you for your insight on what I should read to help me better understand the theory of CE.  Please keep in touch. I will take all the guidance on our journey I can get!

Our visit with Ors at the Plus Center went well.  He is so very kind and Roa took to him with a smile immediately. Ors was impressed with Roa's "alertness" and drive to get walking.  He watched Roa play on the mat, attempt to roll, sit on a foot bench, and stand holding a bar.  He gave me some helpful tips about positioning Roa while walking with him and, like we here from the entire world, GET THAT BOY ON HIS TUMMY MORE!  We are getting there!
 Given the distance to Burnsville,  it is a bit of a hike to do 2-3 days a week for Roa and I given our busy additional therapy schedule.   Ors agreed to work with Roa on Saturday afternoons just to get us started.  He would really like to get a group of toddlers together since one of the beliefs in Conductive E. is the group connection.  So our search for toddlers with motor delays in the Twin Cities area begins! 
If you are a parent of a 1-3 year old with CP or other motor impairment, consider joining this new therapeutic group!  Just send me a message here or at 

Now, off to google a book mentioned to me entitled Dina...

Tuesday, February 9, 2010

I couldn't resist posting Baby Rojo at 4 months with his favorite book!

Knowledge quest

Read, Read, Read.  It is what I do.  I have always been a big reader.  In Grade School, I would read on the bus, in High School, I would sneak my mom's romance novels. I was in "Adventure's In Reading" geeky kid group in school.  From Gone with the Wind to Lonesome DoveBeowulf to Flowers in the Attic... I've read them all.  I've been in book discussion clubs and am a huge fan of those old musty buildings known as libraries (recently heard that line in a movie).
When I met Bryan and found out that he was also a huge reader, I jumped for joy.  Finally, a guy I could talk literature with!  Together, we read novels and compare thoughts.  Every night, we read before bed.  We read the newspaper and discuss news stories at breakfast over coffee.  We read magazine articles, I'm embarrassed to say, in the bathroom.  I read while I breastfeed Roa at naptimes. 
Big followers of the written word.

Lately, my reading genre has changed.   All I read are books about Brain injury, Cerebral Palsy, Conductive Education and alternative therapies.  I read blogs from other great parents online.  Articles from medical journals about current research in motor delays.  Parenting clips on every developmental topic.

 Do I still enjoy reading?   Very much! However, my reading has taken on a new feel. I read with passion and a sort of desperation.  I read out of necessity to uncover the unknown.  I read out of love for my son that is guiding me through this maze of diagnosis', doctor reports, and therapist notes.  And I admit, I read out of fear.  Fear of failure and future heartache.

Bryan jokes with me, "Put down the book, log off the computer.  It will all be there tomorrow".  But, will I have the time tomorrow to fit my quest for knowledge in??

One of my greatest fears of late is that Roa, with his mid-brain injury, will not be able to read.  Language and the understanding of words and written symbol is a mid-brain, left hemisphere function.  Could it be that the son of two very avid readers COULD NOT READ??  It saddens me to no end to even have the dreadful thought. 

So, we read to Roa often and faithfully.  I read while we snuggle in the morning when he wakes, I read to him at naptime, Daddy reads to him each night at bed.  Roa has such a love of books and the stories they bring of firetruck sirens and bunnies with mamas who love them so much!  His eyes light up when we search for the hidden mouse or find the moon on the page.  

We love to read and we will read TO Roa for the rest of his life, if he cannot do so himself.  Because, no one should live a life without a good book that is being read.

Off to check out Conductive Education

Today, Roa, my sister Ellen, and I are off to check out a new center that is in Burnsville, MN called the Plus Center.  They specialize in a therapy for children with cerebral palsy called Conductive Education.  Ors, the owner and main "conductor" at the center is from Hungary where this method was developed.  One of  my mom friends on Facebook sent me a link about Hungary's special therapy and under some strange direction from God, I found a center right here in Minnesota!  Crazy!
We are just going for a tour.  Ors reported that they mainly serve school age children around 5-8 years old, but they would love to have Roa and I join them 2-3 times a week.  Who knows....
I added the link in  interested!               

Our session with Neue the Anat Baniel Method practioner went well!  She gives me more insight on helping Roa with body awareness, movement on the floor, and hopefully, we will get him rolling over to his tummy soon!  We have another session later today with Neue!

Gotta run,  Roa needs breakfast!

Wednesday, February 3, 2010

SHHHH... Listen.

Another mom shared this on her blog.  It really says it all.  Thanks, Owen, for bringing it to Rojo!

LISTEN TO THE MUSTN'TS Listen to the MUSTN'TS, child,

Listen to the DON'TS

Listen to the SHOULDN'TS


Listen to the NEVER HAVES

Then listen close to me --

Anything can happen, child

ANYTHING can be.

By: Shel Silverstein

Tuesday, February 2, 2010

ABM therapy today

Read this article if interested about ABM--

Today is a new day!  We are starting our ABM therapy with Neue in 20 minutes and I am very excited to give it a try.  Anat Baniel and her method of motor skill improvements in children with special needs really makes sense to me.  The natural gentle approach calls to us as parents.  Plus, what do we have to lose!  We feel it was another one of "God's plan" moments to have the one and only ABM trained therapist in the Twin Cities willing to travel here to White Bear Lake weekly to help me work with our Roa.  I will keep you updated on our progress in this new journey.  
All roads lead to improvement... independence...growth...

Monday, February 1, 2010

Promised Pics

Roa vs. Spaghetti.
Roa won! 
He is doing a great job helping get some food to his mouth.
Sesame Street Live.  Here is Rojo.  With Daddy.  And hundreds of Elmos.  This must be heaven!!

Mom and Me

Mom and Me

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