Randoms: Total Communication Approach

A mystic mamma said that confident communication is possible when you realize you can choose to grow rather than say you can't.  Around here, we are definitely open to communication.  All types.  American sign language, signing exact English, augmented communication with a device and of course speech with verbal output.

Based on LJ's latest IEP, he is persistent in communicating his wants and needs in the classroom.  He will tell stories and recall activities that he participated in. He does this by pairing his speech with signs and AAC.  His wonderful speech therapist and special education teacher said "Although he has significant weakness in strength, coordination and intelligibility for speech, he is persistent and takes his time for speech."

He takes his time with speech.  Lately, I take my time with speech.  (No more "crazy mom" and getting stressed by the process).  The sharp words and self-doubt inside my head no longer have my permission to reside there.  Life is teaching me to move a little bit more gently.  A little bit more slowly.  LJ is teaching me to be more gentle with things as they come and as they go.

And so another preschool year is coming to a close.  A big transition this year.  The structure of the Reed School has been profound for LJ.  The integrated classroom has afforded Lew Bug opportunities which range from social opportunities, recreation, academic and therapeutic. He has progressed leaps and bounds.  Its bittersweet, but we are soon going to have to say farewell to our extended "school family", this familiar place, the big open arms of wonderful educators and therapists who have helped us along this journey.  But we are surrendering to everything in life that truly matters.  It's not a trajectory but more a deepening of understanding.  It is with a playful curiosity, that we trust LJ to rely on his own wings.

For Lew's debut in Kindergarten he will attend one of Arlington county's only elementary schools with a Communications Program and a Total Communications/ Deaf (HOH) Program.  LJ will attend the Communications Program (click here for deets) at Patrick Henry.  What matters most in life, this series of big steps and little steps, is that we slow down to take the time to notice them.  We have met with our new Communications Program "family" and are much less stressed and breathing easier about the transition.  The teachers are dedicated, assertive, curious and seem so with-it.  LJ will also have a dedicated speech therapist in his classroom that will be working side-by-side with the special ed teachers.  While it is a self-contained classroom, I am trusting the process.  His IEP stipulates that he will get to be integrated with all the other peers at lunch, recess and specials.

I knew we were on the right start when Ms. Hill said in the IEP meeting with his current IEP team this year (for next year), you can go ahead and put whatever you think works.  If we need to "Mama and I will just get together and have a meeting and...we can just change it then."  Whatever it takes to get LJ where he needs to be.  I like her a lot.  And the other special ed teacher's name is Mr. Lewis so we have that going for us too!  We've got the new communication device paperwork signed by our doctor and we submitted to insurance and we are on track for a great year (assuming the device arrives by September)!  We are right behind you, Lew!

And on a similar vane, I'm feeling proudly victorious about getting Lew's private speech therapist to agree to come do sessions at our house instead of the clinic.  We have been at the same clinic since LJ was a baby, but it is not wheelchair-friendly.  Now that LJ is 38 lbs, it is no longer possible to keep carrying him up and down the steps to get to speech therapy.  Routines are changing.  Spring break is upon us and before we know it, Summer break will be here.  My heart is wide open and ready for the unimaginable.

Mama Bird, Bird by Bird

With permission from the Mama Bird, I have posted below her talk at last night's Reelabilities Film Festival.   I had tears many times throughout the films shown last night, and none of my mommy warriors will ever want to sit next to me for movie time ever again.  But the really moving part of the night was Amy's powerful words.  Not a dry eye in the house so grab a tissue.  I will let them speak for themself.  Mama Bird Amy, you are strong and soft, courageous and beautiful,  you have such love in your heart & you sparkled and shined last night.  What an inspiration to everyone!

"Thank you all for coming to this important program.   It is so nice to see such a great turnout.  My name is Amy.  I have three children, Jackson, Noah and Lily.  My oldest son, Jack as we call him, suffered a birth injury which resulted in significant cognitive deficits, some weak gross and fine motor skills and some social and behavioral issues as well, so when it comes to special needs, we pretty much run the gamut. 

When Andy first asked me to speak at today’s film festival about my experiences being the mother of a child with special needs my mind began to race.  There are so many things I could say.  So many things that I want to say, so many things that I want to put out there.  

I thought about speaking about how at the moment you realize your child has a disability you begin what I think can best be described as a grieving process.  

·       You grieve the typical child you have lost.   Generally, when you find out you’re expecting a baby or when you hold a newborn-- your newborn-- the world is full of possibility—  You look at a sonogram picture or look into the squinting eyes of your brand new baby and you think “who are you little one?”  Maybe someday you will be a doctor or a lawyer;  Maybe you will one day cure cancer.  Maybe you’ll be an artist—a poet or a dancer.  The world is yours.  But the instant you find out your child has a disability, whether that be when your child is still in utero or shortly after his birth, as was my situation, or when your child is two years old—whenever that moment occurs,  your previously held dreams begin to crumble.  Suddenly you enter survival mode and your dreams become much much more simple.  I hope my child will walk one day.  I dream that my child will speak one day.  I pray my child will be able to make a friend.  The grief for the child and the dreams you lost is real and it is unrelenting. 

I thought also about speaking about the loneliness, isolation and heartbreak that often go hand in hand with being a child with a disability and being the parent of that child.

·       Often when I watch my son clap compulsively or say inappropriate things or ask a question for the 25^th time in two hours, I think about what his life will be as he grows and becomes more independent.  I fear bullies and their cruelty.   The need to protect Jack from the cold hard world is almost primal.  I will protect him, I have often thought.  I will take care of him.  I won’t let him be hurt.  But I know I can’t do that forever.  I won’t be here forever.  And the thought of that is simply terrifying.

·        Once I get past fear, though, there is another emotion lurking beneath the surface and it is as difficult to experience as fear.  It is sadness.   My son is ten years old and not since he was a toddler has he been invited on a play date at the home of a typical child.  Not since he was 3 has he been invited, on his own, to the birthday party of one of his neurotypical classmates.  He is often invited to tag along with his brother on play dates or to birthday parties and he has a group of children with disabilities who he counts as his friends. I have friends that include him in family gatherings and my husband’s and my family certainly welcome him.  He is not entirely alone—yet, the fact remains that a huge percentage of the population doesn’t see him.  They don’t get past the stemming.  They don’t take the time to wait for him to answer a question.  Their face grimaces slightly when they attempt to talk to him and realize that he isn’t your average ten year old.  They don’t know about his sense of humor, they know nothing about his love of baseball or how he takes tae kwon do or that he loves music.  A huge percentage of the population pretends he doesn’t exist.  Looks the other way, just as the woman at the bus stop did in the film we just saw about Down Syndrome.   My son’s presence makes some people uncomfortable.  Visibly and clearly uncomfortable.  If I am to speak honestly, I will confess that before I had Jack, I was guilty of this.  I don’t believe I ever took time and stopped to really see the disabled young man who bags my groceries, wheelchair bound children or adults that passed me at the mall weren’t on my radar screen, I often looked at inconsolable tantruming children with impatience—and boy did I judge their parents.  I thought they were incapable  “I will do such a better job parenting and my kids will never act like that.”  I used to think that.  I don’t judge any parent or child anymore.   Not anymore.  Never again. 

I thought about speaking about my worry about what will happen as Jack ages.  And what will happen as his siblings grow and potentially move away.  Will he have a life of his own?  I think about how my husband, Jonathan, and I currently have an estate plan that includes “living forever” because we don’t know who would be willing and able to accept the challenge and stress of caring for him in the event we aren’t here to do it.   

I thought about talking about the impact my son, Jack, has on the rest of our family. 

·       My husband and I are divorce attorneys by profession.  If fifty percent of marriages end in divorce --Some studies have shown that the number rises to between 80 and 90 percent of marriages which include a child with special needs.  As I walk the walk of having a disabled child, I see why this might be the case.  Raising a child with significant needs is exhausting.  It can be emotionally, financially, physically and intellectually draining.   Sometimes at the end of the day, my husband and I look at each other and realize we just have nothing more to give.  Sometimes our tanks are so empty it takes everything we have just to say goodnight to each other.  Sometimes our anger and frustration about our situation—Jack’s situation-- directs itself inappropriately toward the other.  Compounding the issue is that it is difficult to find respite because of the challenges involved in caring for our son.  There is precious little time to ourselves.  Precious little time to remember that before we were Jack’s parents, we were carefree. 

·       As the mother of two children without special needs, I feel a huge sense of guilt for the energy it takes to parent their sibling.  I notice how they have learned to clear the room or busy themselves with a toy when Jack has a breakdown and their father and I attempt to address the problem.  I know they each feel a sense of responsibility to their brother and although I think that is amazing to watch, I think about what a burden that is to them.  Being the sibling to a special needs child is not easy.  It changes who you are.  It places firmly upon your shoulders the heaviness of responsibility and worry before you are old enough to comprehend what those are.

So I had all these thoughts about what to speak about.  And then as I reviewed them in my mind I realized that everything I thought to speak about involved the difficult aspects of being the parent of a special needs child—There is grief, there is fear, sadness, worry, exhaustion.  There is conflict and there is difficulty.   And although these things are all real and important and worth speaking about—they really are only part of the story.  Not even the most important part of the story.  Being the parent of a special needs child is also an amazing privilege which no doubt has enriched my life and it has enriched the lives of our entire family. 

·       Being Jack’s mom has allowed me to gain, suddenly and quickly, something that I didn’t have before and something that, in my humble opinion, an alarming percentage of the population lacks—perspective.  Suddenly I am able to evaluate the importance of things at a rapid clip.  Suddenly whether my children have any athletic talent or make it into the Ivy League matters not at all.  What matters is that my children are able to find happiness.  What matters is that they have friends.  That they have a life that fulfills them.  The details suddenly became unimportant. 

·       Being Jack’s mom has made me realize that you should never ever allow anyone to set limits for you.  Doctors told us initially that Jack would never walk or talk or feed himself.  Jack didn’t know that this was his prognosis and he has achieved every one of those milestones and then some.  He works so hard to perform the tasks so many of us take for granted.  Every time I worry that Jack has reached a plateau in his development, he moves upward.  I have had the absolute pleasure of watching Jack learn and grow and prove his naysayers wrong.  He is the epitome of determination and strength.  He is an inspiration.

·       Being Jack’s mom makes me remember to SLOW down and celebrate the small moments.  In the rushed world we live in, it is easy to concentrate so hard on getting to our destination that we forget that life is really about the journey.  You can’t rush Jack. You can’t get him out of the house quickly, can’t force your sense of time on him.  He does things on his own timetable.  At age 2, he could only say one word.  At age 3, he probably had close to 50 words.  By 4, he had so many words we couldn’t count them.  Now as I watch Jack learn to read—albeit at a very slow pace—I realize how much we should celebrate these small milestones  and victories.    What is life, really, but a series of steps—some big and some small?  All are worthy of being celebrated.

·       Being Jack’s mom has allowed me to find the most incredible network of women who also parent special children.  Women who have become my mommy soul mates.  There are some people who just get it and had I not had Jack, I might not have forged such strong friendships with these truly amazing people.  For them, I am thankful beyond words.

·       Although I spoke earlier of how parenting a special needs child can weaken a marriage and how difficult it can be to have a sibling with special needs, I think the opposite can also hold true.   My neurotypical children are compassionate.  They see people with special needs.  I mean, really truly see them.  They are kind.  They are not frightened by disabilities.  They may be curious, but they understand.  And as I watch my husband parent Jack, I fall in love with him over and over again.  He has the patience of Job.  He is strongly gentle.  And gently strong.  

  

So in the end, I suppose the message I want to leave you with tonight is that although being the parent of a child with special needs is extraordinarily difficult and at times can be heartbreaking, being the mother of a special needs child has also enriched my life beyond measure.   I believe there is a reason this amazing little boy entered my life.   I will be forever thankful our souls found each other. "

Good Karma...at Long Last

So. I'm kinda sorry about this post because it's gonna be a brain dump and me blabbing about day to day stuff that's happened in the last 30 days.  We've been holding steady ever since LJ's ear tube surgery earlier this month.  Been back to the doctor twice to be sure the ears aren't infected and the tubes looked good.  We're still running pretty low on sleep- so that much hasn't changed.  And we're changing Lewis Jack's name to Harvey Headbanger.  He has resorted to banging his head on the wall, either because it feels good, or to get our attention or because he has always sort of thrust his weight backwards due to his hyper-tonicity and since he's getting bigger maybe it's just his natural proclivity. 

We don't know what the answer is.  Not to make light of it either.  It has pretty much freaked me out.  Is it pain?  Is he frustrated because he cannot sleep? We've tried talking to him to get some feedback but but there's only so much we can uncover with yes and no answers or asking him to point to what's bothering him.  It's like the most difficult game of charades you've ever played....except someone is gonna get hurt if you can't figure it out.  I've tried meditation with him.  I've bought toddler-size sleep sacks (Amazon.com is the best) so when his covers come off in the middle of the night he doesn't get cold.  We've had to endure uncomfortable nights sleeping on the floor alongside his bed.  We've kept his nightstand lamp on throughout the night in case he's become afraid of the dark.  We've explained its ok if he cannot sleep but we can relax and lay in our bed quietly.  He has a recorded button that calls for Mommy or Daddy attached to his bed.  So why the headbanging, screaming and kicking?  We're talking several hours in the middle of the night. Ssshh! We've even tried melatonin....

Clearly, he is trying to tell us something and we just are too slow to figure it out!  This has to be the most upsetting thing in the world to me.  If only we could figure it out...to hold him close to us...to not let ourselves, his own parents, be one more person in the world that can't understand him.   So I called in for reinforcements on a solution to pad his walls so at least he doesn't end up with a brain hemorrhage!  Didi and Bop helped put together a makeshift "Sleep Safe" bed until we can determine whether or not this child needs to wear a soft helmet and whether Medicaid will cover us for realz with this mac-daddy Sleep Safe bed as a permanent solution.  Until then, we have protected him by using old memory foam stapled (staple guns are a great way to get out your frustrations with life) to leftover plywood and place against the walls surrounding his bed. Didi took some of my old curtain fabric and covered up the ugly foam to make it a little more attractive on the eye;) Thank you Didi and Bop!!

One sleep deprived day I took wheelchair matters into my own hands and tried to adjust it for LJ's growth.  Hindsight's twenty twenty cause I shoulda let the professionals tweak the chair.  Well, um, I ended up needing to go to urgent care for a coupla stitches in my finger.  Silly finger wouldn't stop bleeding.  I felt like such a wuss compared to how tough LJ is when he's in pain or has much bigger boo boos.  Stupid wheelchair- couldn't see straight and massive headache-can't wait to get rid of you!

In the DIY department, Bop crafted this beauty seen below for the bathroom.  LJ has a problem with most soap dispensers.  So Bop took a Chinese take out container, a regular soap dispenser, and poured concrete around it.  This gave it a sturdy base so that LJ wouldn't accidentally knock it over when he was trying to wash his hands.  And its reusable- when its empty we slide out the soap bottle and insert a fresh one.  Then he cut a circle out of wood to make the top a larger target for LJ's fine motor skills to be accommodated. Its got a metal bracket thingee to keep it in place so when you need to place it on a new bottle it swings out to release the top.  LJ's right hand is still tight and usually balled up in a fist, so he uses his left hand on the pump and squirts some soap onto his right fist and then he internally says his ABCs until his hands are clean.  (just kidding about that last part...I don't know what he's really saying.  Could be swearing for all we know)  Now, if I could just find some time to paint it or make it all matchy matchy with our bathroom decor we'll be all set!

LJ also has been completely obsessed with routines and schedules.  Its been a challenge. We can't get through a meal period without him repeatedly wanting to know twenty questions.  Who's coming? What's for breakfast?  What's the order I will eat that muffin, applesauce and cereal?  Will there be ice in my water?  Who's picking me up today?  What's tomorrow's school lunch? Who's picking me up tomorrow?  What therapies are after school?  When is Mommy teaching? Who is babysitting?

how ironic that I chose this routine given the first chapter of this blog post

We recently found this fabulous app for his iPad called Good Karma.  It has definitely improved the game.  We used to do this with small, square, velcro Boardmaker images but it was extremely labor intensive and took up a lot of storage space. This app is convenient to have on the iPad or your phone, and you can use stock pictures or upload personal photos from your gallery.  We've even had a little speech practice thrown in, involving LJ in the process.  For each activity we put on the schedule, we let him try to record the audio label.  He lights up when he hears himself.
When he starts getting anxious about his routine, we can access his Good Karma app, and all is good.

On a similar vein, our Cranio Sacral Massage (CST) therapist forwarded the link below.  It is the fobityy shiziitty BOMB!  Please check it out....it will surely become a valuable list of online vendors, research on typical SN topics from CVI, Communication and Equipment such as wheelchairs, gait trainers, etc.

Resources for Parents of Exceptional Children

Okay.  Thank you for sticking with me to the end of this rambling post.  I'm off to find out when the equipment people can come out to adjust LJ's hi-low chair (I'm not making the same mistake twice). They were supposed to call me back yesterday about setting up the appointment.  So now I go chase them down.  My work is never done.

Hippo Birfday Deer Mommy

It's my party and I'll cry if I want to.  The good kind of tears.  This morning I awoke to the best gifts my littles could have ever given me.  Nate brought me breakfast in bed.  He piled a sky high mound of raisins, sitting next to it was a banana and a glass of apple cider accompanied by his hand-made birthday cards.  He exclaimed, "Here's your breakfast mommy.  Gluten free!  Happy birthday!"

And then when I went in to get the big, little man up and ready for pre-school, he tried to say "Happy Birthday Mommy!"  Today is awesome!!

Hot Brown

from Spoon Fork Bacon

In the spirit of Thanksgiving...here's a recipe I pinned earlier in the month in anticipation for all that leftover turkey goodness;)  

LJ and Nate's grandparents, Nanny and Babu are coming for the holiday.  (other grandparents, Didi and Bop are also coming:)   We're all very excited.  Feeling grateful for having these special moments with my family.  Feeling thankful for all the hours my mom stood in the kitchen lovingly preparing our family's favorite dishes and holiday traditions.  Wish I could go back and hug my mom's younger self now that I have my own wee ones.  And since it's Thanksgiving, I'm grateful for all of you friends who have showered us with support over the years.  Who have sent encouraging words or ideas for new therapies or procedures or that just-right pick me up when I needed it.  Those of you who have followed the blog so that my stories can be shared. I'm thankful that all we're dealing with, health-wise this holiday, is Lew's ear infection (ear tubes fell out. boo!) and a potential urological procedure. I'm also thankful for not having to cook dinner tonight;) We're meeting friends and their family at a local Chinese restaurant for a traditional non-Thanksgiving pre-feast celebration:)

So far, I've made the mashed sweet potatoes using the last from our CSA farm share, a Butternut Squash Cheddar Bread Pudding (also the last from the farm share), a Pear Pie, and lastly a Dark Chocolate and Pumpkin Cheesecake ala Marcel Desaulniers for our Thanksgiving day feast. Seriously, the latter might change your life.  Josh has made the cornbread-sausage stuffing and is on deck for roasting the turkey and making the gravy.  Oh, and Herb and Cheese Popovers.  We're enjoying cooking.  And thinking about cooking.  Come on over those of you who need a place to celebrate!

Flaky-Pear-Pie Recipe from Food and Wine

Dark Chocolate and Pumpkin Cheesecake 

Planning a post-holiday walk-off with my cousins' Nazlee and James, their kiddos, and my Aunt J and Uncle H!  We're having lots of family togetherness over here.  Lots of good food.  Lots of good times. Lots of good conversations.

Thankful for so much this year.  Lots of little things that add up to a big difference.  Just last weekend, LJ's new gait trainer arrived and he spent two hours walking in it. He slept well that night;)  One of the other things I am so happy about is Lewis' increased communication.  Just this week he has started a new gesture/adapted sign. "I don't know".  Ask him if he knows what's for dinner tonight, and he'll sign I don't know.  The sign for "know" touches the side of his forehead with the tips of his fingers and shakes out the flat hand and away from his face and then palms face up toward the sky.  I don't know. Ask him what's for dinner tomorrow and he'll sign "turkey", the letter "g" sign touches underneath his neck for gobble, gobble, you-know-what.

This day, Thanksgiving, brings up so much for me. Especially my fears for LJ's well-being...that he not suffer, that he not face too many challenges, that he be accepted, that he not be alone.  Wishing that I had some control over the road that lay ahead.  And also, having spent so much time in hospitals and doctors' offices, knowing that there are so many kids that have to overcome so much adversity.  Give your loved ones a tight, tight hug.  Be thankful for their health.  For now, I am just trying my own advice to just breathe deeply.  Just stay in this moment right now.

May you all have a wonderful holiday.  May you savor more everyday moments.  May you all find, peace, happiness and acceptance.  May you dance like no one is watching! (Had to throw that last one in there, honoring my little Nate!  He's been coming up with some fabulous dance routines...one of which was only just recently discovered...recorded... on LJ's iPad...the new iPad...the one with a built-in camera...that Nate figured out how to take videos of himself with his song of choice playing on the older, work iPad in the background.  HILARIOUS. )

Hot Brown Sandwich
Makes 4

Ingredients:
mornay sauce:
2 tablespoons butter, unsalted
2 tablespoons all purpose flour
1 cup whole milk
1/2 cup medium cheddar cheese, shredded
1/2 cup sharp cheddar cheese, shredded
1/4 cup fontina cheese, shredded
1 teaspoon garlic powder
1/2 teaspoon dry mustard
salt and pepper to taste

4 slices sourdough bread, lightly toasted
1 lb roasted turkey breast, thinly sliced
6 rashers bacon, cooked and crumbled
black pepper to taste

1. Preheat broiler on high.
2. For mornay sauce: Place butter into a small sauce pan and melt over medium heat. Sprinkle flour over butter and whisk together. Continue to whisk for 2 to 3 minutes, to cook out the raw flour taste. While whisking add the milk until fully incorporated, ensuring no lumps have formed. Using a wooden spoon stir in the cheese until well blended followed be the remaining ingredients. Season with salt and pepper and cook for 1 minute. Remove from heat and set aside until ready to use.
3. Place sourdough slices onto a baking sheet and top each with 4 ounces of turkey.
4. Top each sandwich with a generous ladle of mornay sauce and top with a sprinkle of bacon (you can serve now if you wish). Place the baking sheet in the oven and broil each sandwich for 1-2 minutes. Top with freshly cracked black pepper and serve.

Balance and Other Matters

Wow, I have to apologize for the long time since I've posted a blog entry.  Why wait to live life right?  We're living it now.  Let me reintroduce ourselves and give the LJ fan club a teeny, tiny update on the progress and challenges we've faced this past month. While I feel like I might be juggling most times, I have come to realize I am really, really juggling all of the time. Life is all about the art of a balancing act...

With the start of school for both boys..... new routines have taken shape (I can thankfully say this finally).  For me, I've also squeezed in some additional yoga teaching which I am still absolutely loving.  I have so much deep gratitude for all that this opportunity has afforded me- more awareness, appreciation, stillness, presence and reflection.  There is almost no end to the positive things. 

Still, some things remain frustrating.  We're still fighting with our insurance companies over one thing or another- from picking an occupational therapist that is not 15 miles from our home and also that is handicapped accessible...to payment for the power wheelchair which we finally got at the end of the last school year.  One thing after another.  { So side bar here, if you live in the metro area and take your child to Children's National Medical Center for therapy, one word of warning.  They can discharge your kiddo from therapy even if their goals have not been met; on account of their long, long wait list!  It's crazy to me.  Anywhoo, that's the reason for trying to find an acceptable alternative to the pediatric OT situation }  Doctor's appointments to therapy sessions to my own doctor's appointments followed by a rather large speeding ticket ($200=lead foot) in order to get there to said appointment on time in DC rush hour.  Ouch, that hurts!

The motorized chair is coming along.  Conflict enters the equation again though.  Are we doing the wrong thing when we promote LJ's use of the power chair?  We feel torn that we are not working harder on his gait trainer and walking abilities.  We sometimes feel that the incentives are not inline.  Nonetheless, LJ is enjoying the chair very much!  In typical toddler fashion he doesn't listen when we tell him to stop, danger might be looming.  He is a dare devil, often heading straight for the steps despite a ramp being several feet away.  His left hand is the dominant hand so the joystick to steer the chair is on the left side.  LJ also primarily signs to us with his left hand, so that makes for lots of stopping and starting.  We also got a new articulating arm extender gizmo that connects the iPad to the chair.  Suffice it to say there is a lot going on with the wheelchair and it takes a very long time just to get from the school exit to the car, with all the signing, and attempts to self-regulate the chair speed (LJ has learned how to use his pointer finger to switch the chair speed from low to high).  I will post a video soon but this teeny, tiny post is not so teeny, tiny.

Right arm/hand mobility:  We are still trying to resolve his right arm tension and since the DMO (dynamic movement orthotic) glove was not successful we've recently gotten a splint for his right elbow to stay extended.  We chose cast material over splint material since little Lew is a bit of Houdini and gets out of every splint that's ever been made for him.  He was given a color choice so he picked blue and promptly came home and had good friends Anna, Nate and Hannah sign his cast.  Still doesn't seem to do the trick at least from a therapeutic sense. Too much fisting is still going on with it ...he's supposed to wear it at night but its a full-on cast...don't see that happening in our future. 

Mobility/gait:  Rt foot is turning out onto the outside edge when he walks with assistance... we recently had his foot orthotics adjusted and he walks better if he wears them.  His hamstrings are very tight too.  Who knows, perhaps LJ had a growth spurt setting off the change in his weight bearing, but we're keeping a close eye on him.  We've submitted a letter of medical necessity to our insurance company appealing for a new walker.  Hopefully we should get it approved.  If so we'll be ordering LJ's new gait trainer, a "Mustang".  Why are all gait trainers named after animals?

Good fun:  We had a one night sleepover with Nanny and Babu so Josh and I could go to a wedding overnight in NYC.  I felt kind of guilty when I was away, thinking about how I shouldn't have left the kids on such a busy weekend...but it was so nice to relax with Josh on the train, take walks window shopping in the city and eating good eats.  Thank you so much to the extraordinary Anna and Caroline for alternating shifts during our absence to hold down the fort.  And as always to Didi and Bop for all their helpful assistance with pick ups and drop offs.  Here is one of the activities Nanny did with Play Food.  LJ and Anna's project are the eggplant penguins...Nate's is the the monster truck made from green peppers.

Communication program PQ2Go:  Oh! Somehow, very inexplicably, it was deleted on our weekend away.  No idea what happened to our back up copy...but long story short, LJ was frustrated about getting a thought across and I could not figure it out.  I tried to resort to PQ2Go only not so fast.  It was completely gone.  After much frustration trying to find it, contemplating perhaps rebuilding it, or maybe see if we could copy the school's PQ2Go version back onto ours.  Two days later, the lovely Bridgid from school was able to sync up the school's version of LJ's customized communication. AWESOME. 

And a major milestone- Lewis turned 4 today! We had a bowling party for his class friends and friends from outside of school.  Uncle Jon and MJ (Josh's uncle and aunt) were visiting from Massachusetts so they got to participate which was good fun.  I'm not sure who had a bigger blast.  The adults or the kids.  I got a strike but it was only on account of the bumper guards!

Nate's newfound love is fishing... Here's evidence in his latest art project (not for school.. but just hunkered down at his desk).

He's had lots of soccer games and birthday parties this month.  Yesterday I chaperoned his class field trip to the fire station.  It was awesome to see such inquisitive, polite kids.  One boy asked what the firemen used the ax for and the man replied, "if the fire's getting really hot, we chop a hole in the side of the house to let the heat escape." The boy responded with another question, "and then who puts the house back together?"  Hah, that's someone else's job.  All the adults had a good chuckle.  Oddly enough (or maybe not), Nate was most impressed by the ambulance.  He told us he liked the stretcher part that hooked onto the back of the ambulance and had a hydraulic lift to move it up and down.

Annie is adjusting well to living amidst the chaos.  Nate just adores her and I love watching the two play.  He gives her giant hugs when he gets home from school and Nate has also enjoyed playing tug of war with Annie and her rope toy.  Most often Nate follows Annie around the house trying to get her to obey his commands.  Or he winds up laughing so hard he falls over when Annie gets hyper after her walks and tears from one end of the house to another.  And that's the current news by us.  Hope you are all doing well. I'm going to sign off as the utility company is doing some work on the transformer box & I've just been informed that I will lose power for the next three hours.

Inspiring Me Today

Words don't come easily.  Lewis continues to work so hard in speech therapy.  A few weeks ago, he reduced me to tears when he approximated the words and I had wished and held out hope to hear someday. And it happened.  Out of the blue.  We were just hanging out at home playing with his toys.

"aaayyy. PAUSE. uuuhhh. PAUSE. ooooo"

I love you.

Sweet, sweet music to my ears. Three words and they brought tears to my eyes.  Still does each time he tries to perfect the sounds and vocalizations of "I love you." And he's been practicing every day.  My heart is so happy.

He's working hard at other words too, like "hi", "eat", "on", "up", "belly", "ear", "eye" and "arm".  But clearly the I love you's are the ones that make us feel so wonderful.

iPad Extended Warranty

The below picture is proof for why you must buy the extended warranty. Unfortunately, LJ's iPad which he uses for proloquo2go, bit the dust. As it was the first generation iPad, no warranty existed at the time. Still, I think it would have cost a good sum to try repairing it. It was accidentally crushed when folding up LJ's wheelchair to put in the back of the car. You couldn't even turn it on to get to the settings screen. The Otterbox Defender case is 100% intact. As you can see, just the glass and the screen shattered to bits.

I'm off to reconfigure and reprogram the most important parts of P2GO that we lost.  The last back up was done in May.  It's a must before summer camp begins and new folks need to be able to use it for communication with LJ.

Inspiring Me Today

This is a video of such an inspiring, young woman who is studying ASL with fervor. It is such a cool thing. To think, with LJ's modified sign language we will one day have him signing/singing songs such as this one...if not verbally. It would be nice to diversify his repertoire of songs;)    LJ is recovering well from his surgery. The first few days were rough as far as pain management was concerned. Once you tried to move him, he winced in pain. At points he would lay in bed and just wimper. Hardest thing on Earth for a parent to witness! But today he is feeling better! After all, he got to have his first bath last night;) Nate asked me if LJ was gonna have anymore surgeries coming up. He's been very sweet and attentive to LJ. And he is even advocating for LJ (as much as himself. lol) a trip to the toy store so HE and LJ can get a BIG toy on the next, potential surgery date. I assured him that this go-round on the surgery front seems to have been "Operation Success" so I wasn't anticipating any more on the horizon. End of story.

Monday, already?

Is it Monday already?  I can't believe another week has flown by?  Too much going on here.  Over the last week we've been busy.  Now that November is here, it seems as though things have switched into high gear.  Our first snowfall of the season, LJ's Halloween parade (I think he was scared and he cried most of the time), Nate's Halloween parade, Josh in California for work, verbal behavior therapy, water therapy, therapeutic riding, seeing the Great Gatsby performed by the Washington Ballet with friends and Didi, meetings with LJ's speech therapist and physical therapist, scheduling future appointments, picking up prescriptions, a fitting for new orthotics, a long walk with a buddy, a coffee chat with another buddy and LJ had a playdate with a new friend (my yoga friend's daughter)...sigh. The weekend was also over-programmed.  With Nate having two soccer games, my yoga teacher training all weekend and yesterday's Daylight Saving time change (which the boys did not allow me to recapture that lost hour) I'm feeling it today. Here's a bit more update for those inquiring minds.

Orthotics- LJ has outgrown these. Since his foot has grown, his arch has changed and his gait has improved he is no longer benefiting from the original DAFO's from two years ago.  We had the orthotist cast and mold LJ's feet last week.  Nate came along for the fun and he helped Noodles pick out some snazzy, new velcro straps and patterned foot pads. Hopefully the customized orthotics will be ready in three weeks. The new ones should also help improve LJ's balance and gait. Next up, shoe shopping to fit said new DAFOs :)

DMO Suit-Its working.  Though LJ resists having it put on each day, once it is on, it is subtly changing his posture. He sits up strong and beautiful in his chair and his new  It is remarkable how well he does immediately once it is taken off.  He can hold an independent, tripod, seated position for a couple minutes.  Prior to the suit, he was only able to hold himself up for a minute or less.  One downside is the zippers can pinch the skin, especially in the groin area.  As a consequence, diaper changes become apprehensive for LJ. The other downer is that the Gtube button keeps getting caught on the suit.  It's tight and you have to be very careful when putting on and taking it off.  Last week, his button accidentally got yanked out when taking the suit off. Balloon fully inflated got pulled through the hole in his tummy.  He was not a happy camper to say the least. Nate was instrumental in helping distract LJ as it was re-inserted.

DMO Glove- The glove is not gonna work.  We're bummed.  LJ is still involuntarily fisting his right hand all the time- including when the glove is worn.  It's never in a relaxed state.  We thought we might be able to have the orthotist adjust the glove so that the fingers could be reinforced. The other idea we tossed around was tightening up the material of the glove to get a 30 degree wrist extension. Theoretically this might abduct his thumb which in turn would help allow his fingers to extend.  In the end, the therapist and the clinical director agreed that the manner in which the glove's technology works was inciting LJ's palmar grasp- similar to when babies have a palmar hand grasp on a finger. The panel of material on the palm can't be removed so no matter what way the glove was manipulated it was not going to help LJ's palmar grasp.  We have a follow up appointment with the therapist next week to see if we can get LJ a new splint casted and molded. This splint will not be functional (he won't be able to do anything fine motor when its worn) but rather will be worn at resting times sporadically throughout the day.

Verbal Behavior Therapy- Here was the latest chart from our manding sessions in October.

The good news is that we're happy to see the item requests and MO prompts increasing steadily throughout the month.  The bad news is that LJ hasn't mastered some of the targeted signs we wanted him to learn.  So we are keeping them on this months list of targeted signs.  We're also changing this month's data collection.  We are continuing the target mands daily but it will be less time intensive.  Instead of tracking all his signs we are only collecting data on the 10 signs we are targeting this month.  If we can track when Lewis does a mand/request using the proper sign 5 consecutive times he has mastered that sign and we can move on to a new sign. 

The sun is shining this morning.  My brain is spinning but I'm not complaining.  We've got quite a lot planned for this week as well.  I've got a plan and I'm looking forward to making ground on some fronts this week.

7pm announcement:  LJ just transitioned from his knees and belly to side sit to a propped, tripod seated position all by himself!!! He did it 3 times in a row if not more!!! As I cried tears of joy, Nate ran and got him his own soccer medal from last year and awarded it to LJ. Melt. And lastly, Nate gave him a kit kat bar from the  trick or treat bag.  I'm blissed out.

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. 

Be Still My Heart

I will never again take for granted the luxury of being able to speak easily and verbally what is on my mind.  It tears me apart that LJ cannot speak.  I tear up sometimes because I know that Noodles is frustrated beyond belief.  There is an eminent fear that he will be misunderstood and most of all unheard.  He has a definite opinion about what he wants to do, which food he wants to eat, which book to read or which clothes he wants to wear.  He is becoming more proficient with his iPad equipped with Proloquo2go but has not shown quick enough progress to ease the worry.  If something is too loud he expresses his displeasure by crying.  If I leave the room and he is upset, again, he voices his discontent by crying.  Noodles understands but he cannot respond.  Clearly, my achingly, beautiful child is a smart kiddo.  He's a hard worker yet his muscles give up and I love him and I ache for him.  And I feel guilty.  

Most of the time I can read his signs or movements pretty well.  Sometimes, though, he gets mad and can't muster a sound so he bucks backward and arches his back or throws himself forward in his wheelchair.  He can do some modified signs, but sometimes his lips move and there's no sound.  He watches our lips and tries to form the shape with his mouth only to come up empty-handed.  If we could just find a way to tap into his thoughts and desires...I listen with my heart and I am ashamed that I am inept at translating his cues but I still fantasize about how the words will sound.

That's where apraxia comes in.  It's entire diagnosis name is "childhood apraxia of speech" or CAS.  You can read the full NIH description for apraxia here.  But the short version is this: tell tale signs of apraxia are faulty speech motor planning and programming.  It is strongly based on neurological deficits or traumatic injury. LJ had major damage to his basal ganglia at birth, not that I know how to read the MRI's, but that's what the neurologist told us.  The basal ganglia is most notably the area in which people with Parkinson's disease lose the control of their bodily movements...just one of several neurological conditions that you may have heard about in celebrity news (read Michael J Fox and Mohammed Ali).  Unrelated to Parkinsons but no foreigner to medicine, Robert and Lynn Koegel are psychologists at UCSB (shout out to Uncle H!). They are distinguished clinicians and scientists who have done extensive research working with autistic children and are experts in helping children learn to speak. Five seems to be the magic age at which, if children will be able to speak, will have a much higher rate of success in the mainstream.  

Practice, practice and more practice.  We have two more years before we age out.  We are engaged in intensive speech therapy and have been since we began services through our early intervention program when LJ was 4 months old.  LJ has 4 hours per week of speech therapy with a PROMPT certified speech and language pathologist. He also has had countless hours of homework practiced in the home, at school, in other therapy sessions, in the grocery store and in everyday life.  I have sat on the other side of the two-way mirror while Lewis tries and tries as hard as he can to do what the SLP asks of him to no avail.  I have broken down in tears.

So as you can tell, I have been feeling a bit down.  But then today LJ's amazing speech therapist, Danielle, wrote me an email that quickly cheered me up."Also....last week...I forgot to tell you.  I was PROMPTing a word on him ...I think "up".  I did it several times to show him how.  He put his hand on my hand and pushed it away while nodding his head no.  Then spontaneously said "me".  Then he attempted to produce the word by himself. That was pretty cool!"

And that was indeed pretty cool.  In other news, the boys started camp on Monday.  Each are off to a great start- albeit exhausted by evening's onset.  Full days of water play, outdoors, sunshine, fresh air and making new friends.  While they're off gallivanting at camp, I've had a little free time on my hands to tackle some extra-curricular classes and feed my soul.  What is not to love?