Saturday, July 19, 2014

Mayor of...Pretty Much Everywhere He Goes

Summer is magic for this kid.  Every summer, particularly the last 3, Simon's development goes into hyperdrive, especially his social development. I think it's something about the no-pressure environment of camp and being around so many typical kids.  Whatever it is, this summer the kid has turned into the freaking mayor of every place he goes.

Tonight was the end-of -session all-camp picnic for the camp he's been at for the last 4 weeks.  We're talking 500 campers, at least 100 staff and probably 400 parents.  It was crazytown.  And Simon?  He was the g.d. mayor of this place.  Everytime we turned around, some kid, usually a girl between the ages of 9 and 14, but also kids his own age, adolescent boys and even parents were chirping "Hey Simon!"  "Give me 5, Simon!"  "Come with me, Simon!".

Then, we found the award his counselor gave him.  Swear to god, the award he got was the"Oops, Sorry!  But we're falling in love with you" award.  See for yourselves:

When we signed him up for this camp, we made a decision to put him in the age group one set younger than his chronological age, so he's mostly with 5 year olds, even though he's 6.  I venture to say this may be the best decision we've made since we decided to have his g-tube (feeding tube) surgically implanted (more about that in a minute, actually!).  For the first time, maybe ever, he's getting to be a leader, has motor skills at or even a little better than some of his buddies, and is the same size as everyone else.  The biggest news is that not only is he charming the masses, but he's caught and captured the attention of a kid his own age(ish).

Maybe day 4 of camp, Laura called me at work with a tone of...well...awe is the best way to describe it.  She explained that as she was dropping Simon off for the camp bus that morning and saying "Bye Simon, have a great day", a parent next to her said, "Wait, Simon?  Are you Simon's Mom?  My son has not stopped talking about his new friend Simon since day one.  Can we please set up a playdate?".  When Laura picked her jaw off the ground, she of course said YES!  We haven't set a date yet, but apparently Simon and this little guy are super tight at camp.  It also turns out that his new friend had a cardiac issue and spent a few weeks in Children's Hospital Oakland when he was a toddler.  Like really does find like.

So...speaking of the hospital...we're going to stay there overnight on Tuesday because Simon is GETTING HIS FEEDING TUBE PERMANENTLY TAKEN OUT.  

I'll just give you a moment to digest that.

 (For new readers, know that Simon has been tube fed since he got ill at 4 months old and has had this piece of plastic sticking out of his abdomen since he was about 10 months old.  Pretty much his entire life. And he's now eating well enough that he doesn't need it anymore.)


And holy PTSD flare up as we are staring down the barrel of a mandatory overnight stay in the hospital.

I forget sometimes how heavily the hospital time sits on me because I have so many sweet memories there from the stable days.  But then last week I went to a meeting at a hospital for work and had to use a restroom on a med-surg floor. Between the smell of the hospital soap and the sound of a beeping monitor, I found myself having to take a deep breath and have a good shiver before I walked into the meeting.  It's been a long, long, long time since we spent a night at Children's Hospital Oakland and it's always been a little scary.

So...4 days from now.


I can't give enough kudos to Laura for getting us to this point.  That woman has literally given blood, sweat and tears to get Simon's eating skills strong enough for us to get rid of the tube.  She's sacrificed three weeks of her sanity to stay locked in a hospital doing battle with him in Orange County.  Done countless loads of laundry after violent, tantruming, table-turning, food-throwing eating sessions.  Worked tirelessly to figure out how to let go of the reins enough to let me try to do meals with him and watched me waste precious opportunities to get calories in him while I fumbled. She really is my hero and so very, very much the reason we are at this cusp.

And Simon.  Good lord, Simon.  That kid....he just...well, he's my hero too.  He's brave and funny and resilient and clever and stubborn as hell and loving and struggling and learning and fighting and curious and so, so fascinating, in the best way.  The way his brain works makes me question so many things I never would have stopped to think about and appreciate so many things I take for granted. He's really just about the most interesting child I could have ever hoped to grace my path.  Lucky for both of us, I take after my paternal grandmother and adore interesting people who make me really think. :-) And people who give good hugs. That kid gives the best hugs in town. Really.

And now, the requisite photo essay:
Mr. Hunky with his summer tan. His redheaded Mama is not jealous of that tan AT ALL.

Playing outfield for Team Coach Art!

Batter and his Pop Pop

Doesn't' everyone go to camp dressed like a Viking?

Darth Vader face off

El Macho (Despicable Me 2) kicks Captain America's butt

Water fight with cousin Max!

"Hee hee hee!  I got 'em!"

Wednesday, June 11, 2014


Some photos of Simon's graduation from Kindergarten!

Getting ready for the journey
All you need is a Darth Maul light saber and a Viking helmet

Welcome to my classroom

Like my mortarboard?

Where's Simon?

Heading to commencement

Can you guess what Simon is doing here? Rhymes with dart.

High Fiving with Mr Kels- 
the 4th/5th grade teacher Simon learned fractions from one day

The look that I wasn't expecting to see for a few more years

Another look I was expecting for a while


Listening to the poem "Everything I needed to know I learned in Kindergarten"

I gradjiated Auntie Dre!!

 I got a sheepskin and everything!

 They even spelled my name right

 Come check out my classroom Auntie Dre

....and I'm outta here!  (except for tomorrow, the actual last day of school)

Next year the little man child will be attending Manzanita Community school. He will hopefully get to stay there for 3 years!! We are very excited about the summer, camp and swimming lessons, Saturday baseball fun, starting first grade and maybe, just maybe in the next few weeks, getting to take the G-tube out. It's a short surgery but a surgery still. 
I cannot imagine the boy going topless this summer and not seeing his little plastic button there. Updates for sure after that one.

I apologize for the lack of posts lately. I have been too much in the 'take care of the present' mode and less in the reflective space for blogging. Things have been hard and good and scary and smooth sailing. We have had stops and starts with ABA, eating, IEP's, and life in general. We've had friends pass away, therapists found, and Dr's visits rescheduled for surgeries 6 months post due.  (yep, Simon has not used his gtube for 6 months! We could have pulled that puppy long ago and we will as soon as we set a date- with our surgeon tomorrow!!)
Great and awe-some changes are afoot. We have one more day of Kindergarten, then one week of Robot Camp then 8 weeks of Camp Kee Tov (a Jewish Day camp that seems to be made for the little Rebbe Simon Lev. It's all about Ruach (spirit!)
I can't wait to see what's coming up.

Thank you friends for walking with us.

Much love

Sunday, June 1, 2014

They're Here!

For MONTHS I've been feeling like we've been  in a foxhole and have just been waiting for reinforcements to help us with Simon's increasingly hard behavior.  There was delay after delay after delay in getting ABA therapy started but it finally happened.  They're here.

The therapists haven't really been actively involved yet, just mostly observing, but just having one extra adult body around with attention for Simon has made a difference.  One therapist comes every morning at 7 am and helps with the godawful morning routine of breakfast/getting dressed/getting to the bus.  This usually results in a tantrum at the beginning and/or end of each activity, but things have been much smoother, if for no other reason than he's got a new source of attention. I suspect next week he'll start to show his true colors more, but the therapists now have a plan in place, so we can step back and let them do their thing.  We get 15 hours a week of ABA therapy (25 hours/week during the summer) and we're trying to line them up for the hardest hours of the week.  So far so good.

We also have also gotten final approval for 30 hours of respite care a month through the Regional Center.  That basically means we get 30 hours of paid childcare a month.  Oh. My. God.  It's the most amazing gift. I feel super guilty about it (like all parents need this/we don't really need this/it's really not that bad) and then I remember that I don't really have any point of reference for what "normal" parenting is like and if the Regional Center thinks we need it, we must need it.

I decided a few weeks ago that we MUST use some of it on Saturday afternoon so that I'm not a seething, exhausted, resentful gremlin by Sunday evening.  The last 2 weekends we have paid our regular babysitters to do 3 hrs each Saturday afternoon and miraculously I have had two of the best weekends I can remember.

Except for 3 weekends ago when I took Laura to Portland, OR (just the two of us) to celebrate her birthday. That was pretty great too. We ate ourselves silly, went to the awesome farmer's market, walked around half of Portland and generally did too much since my type-A booty planned the "vacation".  We will be chilling more next trip. Take a look.
So...they cancelled our flight there and re-routed us and it took 8 hours to get there.  Not the BEST start. 

By the next morning, however, it was all rainbows and roses. 

Getting to see my first cousin, Kelly and her sweet husband Greg


Coffee up!

Old college friends still goofing

Out to brunch with my other cousin Amy (who graciously hosted us!)
 Since we last wrote, we also celebrated Laura's 41st birthday and our 12th anniversary together.
Auntie Dre, looking super cool

Jonah made a BIG funny!

Redheads with paper flowers in their hair

The paper flowers were a hit

Even the frame for the paper flowers were a hit!

Besties :-)
A few more pics
So teary that Simon's school got Mother's Day right. 
Boy is WAY into guns these days, so we got a goofy space blaster to work it out.

Simon sleeping with his brother, Darth.
At Notes and Words, the Children's Hospital Oakland fundraiser we got to go to for free!

Sometimes you need to wear goggles and headphones to do last snack. You just do.