Happy Halloween

In Memoriam :: Esther

I'm not sure if I've told you very much about Josh’s grandmother on his mom’s side. She passed away quietly this morning.  The last couple years we spent with her, the body was failing her, but she was there, and that was all that mattered.  She was 96 – always was a good listener and just as in all her years, she was determined, quiet, a matriarch, strong and inspiring up until the last whisper.

Simply, I loved her and she loved me. I know I made her smile, and I hope that sometimes I made her worries abate (she worried a lot).  I know that Josh made her proud.  Lewis and Nate loved to hang out with her in her den watching cartoons.  Nate used to call her “Et”.  They would play a handgame at the dining room table.  She would stack her frail, beautiful, wise hand atop his hand and he would put his other hand over hers and so on and so on.  They would continue for several minutes bantering back and forth.

Her cheeks were like swatches of cotton candy & her hair was the softest pouf of silver-grey.  She always wore the pinkest of lipsticks to hide a freckle on her lip.  I’d been trying to memorize her face. I’m so lucky our boys got to know her.  This photo typifies my memory of her.

Goodbye Et.  I love you.  I miss you.  May her memory be for a blessing.  I love you.

Ctrl-Alt-Delete

Take good care of yourself today so that you can take good care of others tomorrow. Hmm. That's a thought isn't it?

So what is a more perfect thing to do than expand your wisdom, physical practice, spirituality and mindfulness?  Hit the Reset button.  I've half-way completed my yoga teacher training at JOURNEYoga- and that's my bit of exciting news.  These last two months have been intense as by completion I will have spent over 200 hours in yoga class on the weekends and Josh has been a single daddy to our boys. It's exciting and scary all at the same time. I can't help but think "am I ready for this?". What kind of a teacher will I be?  It is nearing the end of the semester but I am just beginning my studies.  The true journey has just begun.  Still, nothing compares to the challenges I have endured as a mother.  That's really the fuel for this fire.  I want to heal myself, allow for new perspectives and gain strength and breathing room...not just support LJ in his development and therapies and Nate in his perspectives and abilities.  I want to share this love of yoga that helped (still helps) me get through some really demanding times. And my light shines bright because my sense of awareness and calm has been forever heightened (gratitude!!!).  I want to share what I have learned from experiences both on and off the mat.  Oh that and LJ has never once given up or ceased to inspire me with his determination, good nature and captivating smile!  I dedicate my yoga practice to him.  To Nate.  To my two boys who have been my greatest teachers. I am a reflection of them and not the other way around.  And to my husband who has been the greatest support.

Wherever you find yourself, so much of yoga teaches you about being firmly rooted and with an open heart, grounded to everyday life.  It teaches you to observe inward and outward, be flexible in body and mind, re-energize and to let the rhythm of your breath be a constant reminder of where you are at any given point in time. We are all connected by our breath.  Without your breath, I wouldn't have my breath.  There is no duality because without the doer there is no action.  Without birth there is no death.  Without the brain there is no mindfulness.  No matter the burn, I have discovered that concentration, awareness, devotion, discipline and relaxation all can be related pieces of each other juxtaposed with intensity. They all contribute to a greater sense of how connected we all are.  We are all teachers and students.  And I celebrate awareness, resiliency and resetting the intentions in my life.  I am evermore present in today and the "now".

Resetting + Renewal = the sun peeks through.  Live. Laugh. Love.

Namaste  (that means "reverence to you" which more poetically translates to "the light in me honors the light in you.")

via YogaDork

Verbal Behavior

We're still trying to help Lewis figure out how to have a voice.  Thus we've recently started verbal behavior therapy in addition to our weekly speech therapy.  Verbal behavior therapy is similar to Pivotal Response Therapy as briefly touched on in this post combined with Speech Therapy.  We've got ten new signs we are working on with Lewis.  Swing, Pancakes, iPad, School, Dance, Book, Drink, Marker, Up and we are trying to fine-tune LJ's signs for Didi and Bop (the traditional signs for grandma and grandpa).  The behavioral speech therapist (that's Ms. M, a board certified behavioral analyst and speech pathologist) has been largely focusing on Natural Environment Teaching with a focus on teaching "Manding" (that's the verbal behavior buzz word for requesting) to the early learner (that's Lewis).

The ABC's of Manding are:
-Antecedent: motivational operation (desire or motivation- Child)
Declares ie reaches, looks at an item, looks at therapist/caregiver
- Behavior: verbal behavior (vocal/sign)
- Consequence: specific to momentary operational/motivational operations
Most Important though= teaching our children that mand gives our children a voice


How are we doing this? We have to take extensive data whereby MANDS are incorporated.and/or contrived into daily activities throughout the day and then the data collected will be graphed and analyzed.  The specific data we are collecting is referred to in the verbal behavior world as "trial by trial".  Stuff like total mands per minute, full physical prompts per minute, gestural prompts, vocal prompts and item prompts per minute. The first data we collected suggested Noodle's total mands per minute was at like 0.46. Boo.  We want him at like 3!  So over the next month(s) we will be charting and graphing all sorts of fun data to formalize a behavioral assessment and plan that is appropriate for LJ. We are committed to practice and have faith that our dedication and our efforts will lead to a positive outcome. 

Little Man, Big Soul

Noodles is turning three tomorrow.  He has taught me so much these past three years.  It has been a privilege watching him grow and learn. His smile, his eyes, his love- they are my relief.  I am 100% positive that this year Lewis will enjoy that birthday cupcake finally!  Most people normally don't give eating a second thought.  They just eat.  Same for walking.  Same for talking.  They just walk and talk.  No big deal.  Not for Lewis.  He has concentrated on every single bite, sound production or step he takes.  Every single one.  His strength, courage, determination and persistence are an inspiration.

Last year, for his birthday, LJ didn't want the cupcake.  What he wanted was everyone to sing the birthday song repeatedly.  He still loves singing.  At mealtimes, if he is watching a show and they sing a song on the show, he will grab my hands and point to me to instruct me to sing along. Or he will point at the show and use monosyllabic sounds to get my attention.  Other times, he uses his signs to communicate he wants more songs.  Then there are times when he takes my hands over his hands so that I can clap his hands together for him.  Whenever I sing (albeit off key) and clap, he lights up. I hope one day that he will chime in when I sing him songs.  As each year passes, the more you are you. The more you know.  This year, we sing for you.

LJ (and Nate), you are my source of constant surprises.  You may be a little man on the growth charts, but you have a huge soul! I love how you giggle when mama assists you in chasing Nate around the living room.  I love how you love bath time!  I love to hold hands with you. You are a beautiful person. Your laughter makes me so happy.  May you accomplish everything that your heart has dreamed.  May your muscles and joints get some relief.  May things not be so difficult for you.  These are my birthday wishes for you.  I fall deeper in love with you everyday.  Happy {birth}day.  I am so grateful that you were born.

Chase Your Dreams

Being Elmo

I can't wait to see this documentary. From the trailer, its no wonder that Elmo represents love. Despite LJ's new friend status with Yo Gabba Gabba, I think Elmo is still his BFF.

The boys might sit through this movie too!

Please Be Seated...DMO Suit Has Arrived

It's been a bit painful.  We had a fitting in the beginning of June for a dynamic full body suit and glove.  We are hopeful this will resolve the muscle memory issues with Lewis, increase his trunk control and help him learn the correct body alignment he needs to master day-to-day tasks like independent sitting and grasping toys thereby avoiding another round of botox injections.  Nascott is the only one who does this sort of thing from the UK in this area.  They are supposed to call you once the measurements are submitted to the UK and your suit is fabricated and then shipped here.  Only, I had to call them at least twice a month since the initial fitting and measurements to stay on top of it.  The suit and glove finally arrived and we picked it up at Hospital for Sick Children this past Friday.  LJ looks like a super hero.  I don't exactly feel like one.  It has taken me a minimum of 30 minutes just to get the glove on his weaker, right hand let alone the body suit.  The suit has panels in it which cue the correct muscle groups to engage when its time to work and helps the other ones to relax!  It's hard core no pun intended! We'll get the hang of it.  Here's the superhero himself donning the new garb (which he wears now all day under his civilian clothes...except when he sleeps): 

For all you ladies out there who are willing to wait 4 months for compression hose, it's like Spanx for the body on crack!