Reality Stick

This is the rest of our lives...

Laura and I feel like we just got whacked upside the head with the reality stick. Hard. We had our follow up appointment from the feeding therapy clinic on Wednesday and just got Simon's ABA therapy assessment report.  I haven't read the ABA assessment report yet but Laura looked wrecked by it.  She said there are some areas where is at about an 18 month old level and at the most about a four year old level. He just turned SIX.

With this report and our experience at the feeding therapy follow up we got, in a way we hadn't really gotten before, that this boy of ours is going to have an uphill battle for most of his life

Since he got the "meets autism like criteria" diagnosis a year ago, I've been saying "he's got a lot of the characteristics of autism, but they don't really think he's autistic".  That, my friends, is what denial looks like. Being on the spectrum is being on the spectrum. His brain is wired in some way neither Laura nor I understand nor can really figure out and the older he gets the harder things are getting because of it.

I'm just starting to get that it's likely that he will have to work and think harder than most of us to do basic stuff like eat and communicate and pay attention... for the rest of his life. He's not going to "grow out of it", it's not just things being a little off from the trauma he experienced as a baby, he's not just quirky.  Our kid's brain is a total mystery and the older he gets, the harder and harder time he has meshing with the world.  It's brutal and painful and exhausting to watch and to parent.  He may always need our help. Not "Mom can you float my car insurance payment for a month" help. Big help.

On Wednesday, the whole feeding team observed us doing a meal with him.  It went as it typically does with some eating, a lot of coaching, and a lot of fighting. They universally said we're doing everything exactly right. Laura cried at this proclamation, and not out of gratitude.  Doing everything exactly right and still having everything be such a battle makes this whole thing feel Sisyphean. There is no magic trick, no one thing we should try, no real lynch pin that we can pull.

The psychologist was amazing.  She totally affirmed Laura for the magnificent work she's been doing.  She's doing everything you could ever hope a parent to do for their child.  And our child is not like most children. She explained that because Simon is on the spectrum, there are ways that his brain can't really take in and process things like other kids.  It's clear we've been giving 200% she said, AND  giving 300% is not going to get different results.

She talked at length about kids on the autism spectrum often completely lacking "internal motivation" to do things.  Internal motivation is doing something because you get a good feeling from falling in line with a group or knowing that you'll feel proud after accomplishing something hard.   Unlike most kids, Simon isn't motivated to do things because other people are doing them or because he will feel satisfied or accomplished when he does something. He needs CONSTANT external motivation (praise, stickers, 5 seconds of video) to get through most things in his life he is not inherently interested in.   Doing floor puzzles?  No problem.   Watching videos of Olympic BMX riders?  Bring it anytime.  Listening to/reciting Green Eggs and Ham?  15 times a day please.  His brain hangs onto those things obsessively.

However, anything that's not really in that obsesso category is...well...really hard. Hard for him to do and hard for us to get him to do. In the last 6 months he's gotten more and more furious about everything he "has" to do that he doesn't want to do. Soooooo pretty much any transition, putting on clothes, taking off clothes, brushing teeth, eating, being in a group setting, walking out the door, walking in the door, getting in the car, getting out of the car. He flies into a rage telling us he will destroy us, we will go to jail, that he will never ever do it, hitting, kicking, knocking everything off a table.  All. Day. Long. We never quite know what will set him off or interrupt the tantrum and they're increasing. His brain has a whole set of rules and language and customs that we don't understand. When he gets triggered and I have no idea why,  I feel like a foreigner totally confused by a native's hostile reaction to an etiquette violation I completely missed. It's awful on my side and I can't imagine how isolating that must feel for him.

If he has a "bad" meal and doesn't get a reward or has to go have quiet time, it's devastating to watch.  He will lie on the couch and cry pitifully and say he is so sad.  If you ask him why he's said, he will say "because I had a bad dinner".  He gets it AFTER the meal is over.  Even though you coached him 25 times during the meal about the rewards he will get if he finished (and offer 92 million incentives during the meal), there is a way his brain just can't process that information or hold onto it long enough to get him through a meal or override whatever it is in his brain that is telling him to fight. So many meals have ended with this kind of "failure".  It's so so sad, for everyone.

At the end of our session, the psychologist gently laid out the option for us to dial things back a little.  She suggested using the g-tube again to do some high calorie formula at  night and/or at school and ease up on the pressure at the table.  He's actually right on target for his weight gain which means Laura has done a spectacular job making sure he gets enough calories. It's just that it's practically killing her to do it.  So, we get to work in a little space for them to catch their breath until ABA therapy starts and we get some systems in place to help motivate him to do all the things he struggles with, including eating.

So.  That's where we are.  Still sort of holding on by fingernails and trying to catch our breath and not push so hard.  And grieving the reality of what our future realistically looks like...still uncharted but likely pretty rocky with no smooth waters in sight.

*sigh*

Tomorrow is our family Passover Seder.  I hope for liberation from the bondage that has kept us close to the edge for the last 4 months and have a fervent hope that we can find  more peace and joy in the coming months.  Dayenu.

Oh yeah!  On this trip we also got to visit with my Aunt and Uncle and take Simon to Disneyland for the first time! Once he got acclimated, he had a great time.  See for yourself...

He is so NOT feeling Disneyland yet

Is there a Princess in there?

We blasted Zurg on the Buzz Lightyear ride FOUR times

We survived Buzz Lightyear ride! (with my Dad and uncle)

Most maniacal driver you ever saw.  Look at his face!

16 is so terrifyingly close...

Do we even need a caption?

A metaphor for Laura's life right now :-S

Exhausted and happy Mommies

Every kid needs a light up light saber for a night time jaunt!

About 5 minutes after getting in the car to go home

We did it!!

First 3-D experience on the Star Wars ride.  He LOVED it. 

Mama is not quite strong enough

Boys and their Churros. 

Finish line in sight but still out of reach

It hasn't happened that often but every once in a while someone will tell me "Welcome Back! Congratulations! I'm so excited that he's eating now!"
I don't know what to say.
It feels like it's one of those times when someone says "Hi, how are you?" but what they really mean is just "Hi".

Simon is eating. It's true. He has not had a tube feeding for over a month now. He has taken his meds by mouth for weeks and the only thing we have put through his Mic-Key is his appetite stimulant which in the next week or so, we will likely drop as well.

He has not lost any weight and this coming Wednesday he will step on a scale and hopefully have put on a few ounces as well.

And, dear friends, this is fucking hard. I am really tired and frustrated and am just trying to make it until Monday when Simon goes back to school.

We haven't spent this much concentrated time together since before he turned three years old and back then he wasn't the lovely and engaged five year old that he is now. He was much more agreeable and oh yeah, HE NAPPED!!

This part is even harder than in the hospital. It's just Simon and I. Jaime is back at work and we're still sitting down to eat 6 times a day. Some times it's great and there's no issue. Other times it's a battle just to get to the table.

When Jaime is home it's so helpful to have support but it's still me driving and setting/sticking to some expectations for Simon.

He's slowly settling in to being home finally (I love the holidays but am really glad they're over), and on Monday we'll have another transition to a new school and schedule. Hopefully this one will be the last for several months.

We've only had a few days here and a few days there that have been consistent in terms of location and daily activities and that's exactly what the team at CHOC warned us against as we were leaving; to get back to one routine as quickly as possible. We were in one place for 4 days and then moved into a home that was still under construction, went to countless holiday gatherings and had meals out, alone, and with dozens of people. Given the time of year and the work being done on our house I think we did the best we could.


I think this time is the hardest yet. The promised land is not only in sight, it's so close that I can see the details of our new life.

It's just like our build-out at the house. Simon's room is just about finished. The walls are up and painted. The closets have doors and the lights work. He's played in it and has begun to call it his own. We just don't have a bed for him yet and the curtains haven't been hung so he can't really 'live' in it and has yet to spend the night.

Simon is eating and we haven't used the feeding tube BUT he cannot be left to his own devices (unlike most other five year olds - said no mom ever). I know that most 5 year olds need some prompting around caloric intake AND this is different. We have a bevy of protocols and strategies that I must keep in mind, along with awareness around stamina and skills that most other parents only take to Defcon 1,2 or 3 tops.  We run a tight ship and sometimes find ourselves at levels unheard of....except by other tubie parents workin' the wean.

Once again, I feel so self conscious around my parenting out in public. My higher self knows that this is the path we are on and it doesn't really matter what other people think. My lower self cannot stop the wondering what people are thinking as I'm practicing our eating strategies in public (or even better not practicing our strategies but instead hand feeding my five year old or holding his cup for him as he sips from the ever ubiquitous straw.)


I'm raw. I need a vacation. I don't feel focused enough on the larger world to drive a car or make simple decisions like what bad television to watch after the child has gone to sleep.

We are so close.

Simon will go back to school, I will go back to yoga and housekeeping. Simon will get to have his own big boy bed this weekend and at some point sleep in it. At some point in the next couple of months, he will consistently eat enough food to thrive with a minimal amount of prompting and push back. At some point it will feel normal and Jaime and I will plan an overnight away.


At some point.
That point is not now.

This time feels so crucial and important. It's time to really integrate this eating thing into his day to day.
It still feels so strange and wonderful to say that.

Eating. I'm talking about eating. Something most of us do several times a day without thinking.
I haven't done that in years. That's thousands of meals that I've shared with Simon where there is an intense focus and bites and calories counted down to the single digits.


The team said to relax. Not every meal is a therapeutic meal. It's true. In fact yesterday was downright pleasant with only minimal requests to take a bite here and finish some milk there. The day before and the day after, however, were not that. It's not every meal and that almost makes it more exhausting. In the course of a meal I can feel the shift and sometimes we can come right back from it and other times it becomes a struggle to just get one more bite in. The next meal is usually better since it involves greater hunger but it's all exhausting. It hasn't helped that we're still on the same schedule with just 1.5 to 2.5 hours in between meals.


We've had amazing support with family already wanting to step in and give breaks/learn the ropes. I feel incredibly supported and still quite alone. How much of it is real versus in my head.....almost doesn't matter. Almost.


I know a change is going to come and Monday brings a whole 'nother level of normalcy. Mostly I'm just having a pity party for myself and wanting you to come along.


P.S. Jaime's birthday is on Sunday January 5th and since I can't get it together to gift her with the most romantic gesture ever, if you're reading this, then send her some birthday wishes and/or maybe a winning lottery ticket.

First day at home ready to eat in the new dining room

MM Gets a check up

Marble Fun with Cousin Charlie

Yes, that Simon going to town on a caviar and sour cream omelet!

Mishpacha! (Family)

Running on Fumes

The Mommies are officially at their breaking point. Whatever we thought was hard in the hospital was child's play compared to what we are doing right now.  In the hospital we had a big room with everything we needed,  that someone else cleaned, food brought to us, a team to coach us, and free on-site kid centered entertainment.  Now?

Well, now sort of looks like this...

We are back "home" which should be the time when we're trying to cement all this stuff and get a routine, but it's been kind of a shit show. Our house is still under construction so when we walked in from the airport, 3 guys were working, including the guy doing the clean up of the living room.  We dumped our bags in the bedroom that is completely packed with stuff from the rest of the house and hung out in the backyard with the dog until it was time to do snack. We had to leave because we had no table or chairs to sit at and no food in the house.  We hung out on our local strip for an hour or two and Simon had an awesome snack at our local bakery. A few hours later, we went to a very sweet Christmas party where Simon ate like a champ. So far so good.  Overwhelmed by our house situation, but eating seeming to go okay.

We were supposed to go to my Mom's house for Christmas morning (this morning) but they all had a nasty cold that we wanted no part of so we went to another Christmas morning soiree for breakfast.  Simon's eating was kind of a disaster but we had a really sweet time with our friends.  A few hours later, we left that party to go to *another* party because we can't really be home (and because we have amazing framily that we wanted to see).

This party is where we started to come completely unglued.  Well, I did anyway.  About 5 minutes after arriving at the party, Laura realized that none of the delicious food available were Simon's preferred foods or easy enough for him to eat to have successful meal, so she asked me to go home (about a 10 minute drive each way) to get a box of mac and cheese and our copy of Monsters University.

On my way, I decided that since they were "on the clock" to get a meal done in a certain amount of time, it would make sense to stop at Walgreens 5 blocks from our friend's house to pick up microwavable Mac and Cheese rather than drive all the way home to get regular Mac and Cheese.

Well, apparently Walgreens on High Street is THE place to be on Christmas Day and there were at least 15 people in line.  I willed myself not to have a stroke waiting in line, feeling the ticking of the "meal" clock in the back of my head. Twenty minutes later I got out with stuff that would cook in three and a half minutes (Monsters, Inc no less!) and  feeling very proud of myself for my creative problem solving.

When I walked in with my spoils, Laura looked like she could kill me with her bare hands.  Simon apparently had a hard time eating the kind I bought and she had been using getting to watch Monsters University as an incentive to get him to finish.  I needed to get BACK in the car and go home to get OUR mac and cheese and the movie.

I managed to not kill anyone on the drive but I did let out such a primal scream in the car that I actually sort of startled myself.  I ran into the house and realized that the movie was packed in one of 4 suitcases sitting on our back porch. I  dragged them all in and started looking where I thought it might be.  After frantically digging for a few fruitless minutes, I started have a complete and total temper tantrum.  I literally started tearing the bags open and dumping everything on the bed until there was a huge mound of toys and clothes and books and shoes on the bed.  

Ten minutes later...still no movie.

I let out another scream of frustration and then realized that the door was open and that someone might realistically call the cops.  I pulled it together enough to text our friends to put water on to boil and  jumped back in the car.  When I got there, Laura and I had some choice words when she realized I didn't have the movie and I noticed the water wasn't boiling (not enough time at that point to make it so they turned the water off).  I stormed out and locked myself in the downstairs bedroom and had a good cry, unable to really figure out how else to handle this level of frustration.

Our friends did a great job affirming how goddamn hard this all looked and Laura and I cooled down enough to a civil conversation about 10 minutes later.  We made the freaking noodles and he did a great job when he ate it at snack.  We had more family over for dinner (Chinese food, as per the Jewish tradition) and he scarfed his food down pretty easily.  He's basically trying to torture us.  One good meal, one awful meal.  Just trying to keep us right on the edge.  Actually, I feel so much for the little guy.  If we're about to lose it, I can only imagine how he's feeling.

We dug out our kitchen table and enough chairs to sit in our dining room. Simon's godmothers are taking him for tomorrow afternoon and we're going to try to use the last of the spa treatments Laura still has from winning Mother of the Year at the Claremont Spa 2 years ago.  My Mom is coming tomorrow night and we're going to get date night for the first time in a month.  I'm voting for a movie since I'm not sure I'd be able to put a sentence together.

Laura, as you might imagine, is just as fried, if not more so since she has to do direct combat with Simon 6 times a day.  It's just...well, it just sucks.  It will be worth it in the long run, if it doesn't kill us. I'm just trying to remember that this disruption and chaos and stress is immediate but temporary.  I bet in a week this will feel like a distant memory.  That's what I'm counting on to make it through the week. 

Day One of Freedom

As expected today was a little...bumpy.  Breakfast was just the three of us in our little rental place and ended up being somewhat of an epic battle.  I was unsure of whether to stay with them and provide encouragement or leave them alone so it wasn't more pressure for him. I opted to leave them alone, but after consulting with Laura, will be staying with them for future meals.  I realized it's totally unnatural for them to eat alone when we're trying to normalize his eating, and she sure as hell can use the moral support. Laura said this morning felt like the level of push-back that she saw week 2.  I have no doubt, since it sure sounded unpleasant from the other room.

We tried to do a morning snack with a full house at the table (Laura's dad, her sister, brother-in-law, our 7 year old niece and very rambunctious 3 year old nephew).  We aborted about 5 minutes in and went to another part of the house.  We got in what we needed but were definitely feeling nervous about how this was going to work since we're not going home for another 3 days.

We were much better prepared for lunch.  I made sure to gather up paper, pens and favorite books to use for cheerleading and he and Laura made it through the meal with only moderate resistance.  We also were able to coach family members on what to do to support us during meal times.  Basically don't feed the bear, and don't play with the bear.  No offering other food or trying to "help", just observation and encouragement. They're becoming pros in record time.

I've been thinking a lot about my role and co-parenting since we started this program since Laura is officially the "Primary Feeder".  She's been the Primary Parent for the last 5 1/2 years which has meant that I often take sort of a back seat/supporting role on a lot of things by default. The delineation of me as secondary is a lot more defined in the program, which has actually be helpful. It doesn't mean I'm less important, it just means Laura is "driving" more.  She's gotten a lot more training and the responsibility mostly rests on her, so  my job is really to back her up as we try to move Simon to independent eating.

I think one of our strengths as parents is that Laura and I prioritize backing each other up in front of Simon. That means that even if one of us thinks the other is asking him to do something unreasonable or doesn't understand why the other parent is doing what she's doing, we keep our mouths shut in front of him.  I might pull her away for a minute to give my input or ask for clarification or explanation but I don't undermine her and she does that same with me.   Whoever was "driving" might change their request of him or tactic based on the conversation, but it's not clear to him that one of us had beef with the other (usually). We are a united front.

After going through the feeding therapy program, I realize how totally necessary this particular parenting tactic is for this thing to work.  This is all about setting reasonable expectations for Simon and supporting him in doing what was asked of him.  If parents are working at cross purposes or one parent is undermining or questioning what the "driver" is doing, the kid is going to seize on that weakness in the unit and use it to their advantage to get out of doing the really hard work they need to do. I am constantly whispering to Laura "okay, how many more bites to you want him to take" or "what's the next thing you want him to do" so she and I are on the same page and I can back her up.

I cannot imagine someone not losing their mind once they get out if they have a co-parent who can't back the primary.   I know of/have heard of so many couples who really struggle in  this arena and get it. It's freaking hard for me to put my ego and control freak tendencies down sometimes, especially when I'm stressed and tired and about to kill my kid. It's taking everything we have to keep this eating momentum going and we (fortunately) aren't having to learn a new way to co-parent on top of a new way to get our kid to do one specific activity.  I say this all to say that I consider myself really freaking blessed that we have sort of figured out this one little slice of parenting together before the program.

I also have really been practicing this new framing of discipline with Simon and seeing amazing results. Today Simon and his 3 year old cousin were playing with the same toy and Simon got super bent out of shape and started destroying the structure we had built because he didn't want to share. I started with my usual tactic, saying "Simon, you have to share with Charlie.  That's what we do.  If you can't share, you can't play with this".  Of course he flipped his shit because who wants to be told what to do and told that if you don't do it, you can't get what you want?

My gut was telling me to do something different but I couldn't come up with the words to I just took a minute to chill out and think.  Then I tried "Simon, when you're ready to share with Charlie, we can play with the toy again.  Are you ready to share with Charlie yet?" We went through this about 4 times, with me affirming that I heard that he was upset and not ready yet.  Then magically on the 5th time, he cheerily said, "yes, I'm ready" and bam, they went back to playing.  So simple and yet...magic.

Learning how to really rock these foundational pieces of the feeding program, being consistent with expectations/request and re-framing things in the positive,  are going to totally change my life as a parent. I can already feel a lot of my own anxiety and stress about how to parent fading as I get better at this...

Can you say BONUS?

And now, for a few photos

They took lessons at Monsters University

Someone loves their auntie!

Someone loves their sister!

Dazed and Confused

Feeling like I did that day that we left the PICU at Children's Hospital Oakland that November 20th, 2008.
Like I was walking out into the bright daylight after being on a spaceship for a really long time and thinking that I recognized the planet I was on but also pretty clear that I was not where I started.

I'm a little confused. Where are my sheets to record calories? Where do I fill out tomorrow's menu? Where are my proportioned plates that come every two hours cooked and delivered? Who is whispering encouragement and known but forgotten strategies in my ear? What do we eat for breakfast? What do we do for fun now that Turtle Talk isn't happening 2x a day?

It's just like when I wondered who was going to come around every few hours and check his vitals, NG tube, heart and respiratory rate. I am on my own. I portion out his food. I think about nutrition. I remind myself that I know what to do. It really has become a part of the air I breathe now. I don't have to think about it all that much.

I have to surrender and let go. There is solid ground beneath us. We packed it solid with three weeks of really intense and hard work. We laid a foundation.

Dr Katz said, in our final full team conference, that if it were up to him, they would have pulled his tube out already.

I nearly crapped my pants.

*speaking quietly*   I know that he's right. I know that we've got this.

I don't think that the next few months will be easy.

I do think that they will be all about integrating what we've learned in a less controlled environment and eventually become second nature. The same way that you all know that when you wake up in the morning, you will eat food, go about your business, laugh or cry, visit the lavatory, and breathe some combination of fresh and recirculated air...I know that Simon and I will do the same. It will just take us some time to do it and not think about it so much.

Jaime is and will continue to be an amazing source of support AND the team was clear that I am the primary feeder for a while. Simon needs to feel more success right now than he does challenge, especially during these next few months. She will have her times but it's mostly going to be me.

The honest truth is that I'm looking forward to it. The last few days of Jaime stepping up to the plate were as hard on me as they were on Simon. I was just getting into the groove and really feeling like the tools were mine to master. I missed getting to practice. It was so important that Jaime get that time and I will forever be in awe of her ability and vulnerability....and I'm glad to be back with Simon at the table.

I hate to admit it but the song from Aladdin is playing quietly in my head. Cheese Fest but true.

A gentle re-write

Mommy/Aladdin Sings:

 I can show you the world
Shining, shimmering, splendid
Tell me, Simon, now when did
You last let your heart/taste buds decide?

 I can open your eyes
Take you wonder by wonder
Over, sideways and under
On a magic carpet/culinary ride

A whole new world
A new fantastic point of view
No one to tell us no or where to go
Or say we're only dreaming

Simon/Princess Jasmine sings:

A whole new world

A dazzling place I never knew
But when I'm eating here, it's crystal clear
That now I'm in a whole new world with you
Now I'm in a whole new world with you

Mommy/Aladdin:

 (Now I'm in a whole new world with you)

Simon/Princess Jasmine: Unbelievable sights
Indescribable feelings
Soaring, tumbling, freewheeling
Through an endless diamond sky

A whole new world

Mommy/Aladdin: (Don't you dare close your eyes)
Simon/Princess Jasmine: A hundred thousand things to see and taste
Mommy/Aladdin: (Don't hold your breath, it gets better)

Simon/Princess Jasmine: I'm like a shooting star
I've come so far
I can't go back
To where I used to be

Mommy/Aladdin: A whole new world
Simon/Princess Jasmine: Every turn a surprise

Mommy/Aladdin: With new horizons to pursue
Simon/Princess Jasmine: Every moment gets better

Both: I'll chase them anywhere
There's time to spare
Both: Let me share this whole new world with you

Mommy/Aladdin: A whole new world
Simon/Princess Jasmine: A whole new world
Mommy/Aladdin: That's where we'll be
Simon/Princess Jasmine: That's where we'll be
Mommy/Aladdin: A thrilling chase
Simon/Princess Jasmine: A wondrous place
Both: For you and me

*That's not embarrassing right? He won't be thoroughly upset with me in 10 years time?*

So this is it dear friends. It's the final post for a while, I think. We're going to try and go back to some semblance of normal. Our own special brand of it (with theme songs from Disney slowly fading away) and school and yoga and community gatherings coming back into the picture.

The Solstice is tomorrow and the Fitch-Jenetts are perfectly poised for the return of the Light.
Blessings abound.

Soooooooooooooooooo much love for all the support and fellowship. If there's anything I can ever do for you, please let me return some of the love somehow or someday.

Our Team ( minus some key players but still)

Last day shenanigans with Wall E and R2D2 visiting

 Boy meet Robot

 Boy touch robot lovingly

 Boy ask for Robot for Christmas

Simon with his favorite (bordering on obsessive love) nurse Monica

 Our room

A major hangout

LOVE YOU CHOC!!!

Parenting 101

Oh. Mah. Gah.

Tonight is our LAST night here.  There are ways I will totally miss this place and then...well, it's exhaustingly heartbreaking to see countless skinny kids with sunken eyes shuffling around the hospital pushing IV poles.   It just is. There's a way that I feel almost guilty about having a healthy, loud, rambunctious kid running around right in front of these parents.

*sigh*

So, today...well, today I experienced what felt a bit like the Madonna/whore dichotomy. Bear with me. I'm struggling to find the space between "Mama Means Business" and "Mama is a Negative Control Freak". Doesn't feel like there is much room in between but I know the sweet spot exists because Laura almost has it down. She is, apparently, the perfect woman. :-)

Leading breakfast was...interesting.  Food throwing, big pushback, hitting. Once again, felt a little in over my head but had a few more tools this time. I mostly went with "extinction" or basically ignoring the bad behavior and trying to focus on the positive but he still didn't eat very much. It felt better than yesterday but the volume outcome wasn't much better.

The feedback I got after breakfast from the therapist was basically that I needed to channel my "inner bitch" as one of the other team members un-officially calls it.   When my kid hits me or throws food and utensils, I need to put on my big girl panties and show him I mean business.  Like, if he's being a total pain in the ass and things are escalating, whip that chair around right fast and get that kid backed up against the wall and move the table in so he can't reach you before he knows what hit him. Don't hurt him, don't scare him, don't threaten him, but basically splash water on his face and get his attention. Then go right back to the table and carry on with a calm but clear message that Mama don't play that.

At lunch, we had a different therapist, I had a bit more of a game plan and we had food he liked.  I thought it went great.  I put on my serious Mama voice and we got the food eaten.  Then I checked in with the therapist and Laura afterwards.  I was going TOO negative.  I was using some of the sticks when I could/should have been using carrots. Things were going well but I had been so used to his resistance that I had prepped all my big guns and was using those when I could have been encouraging the great work that was happening.

It's so so so subtle sometimes.  Like, instead of "you need to eat 2 more bites or we can't go to the playroom" you would say, "okay, 2 more bites and we can go to the playroom".   So minor but SO huge in terms of what it's conveying.  It's pretty much all about helping the kid feel like they're in control but you managing everything to get the result you want.  No "Yes" or "No" questions, so instead of "do you want to drink more milk?" you would give a forced choice of "2 sips of milk or 3 sips of Milk.  Your choice.  Then we get to (whatever you think will motivate them)".  A therapist said it today and it's totally true- it's like learning a different language.

It's really so helpful for me as I think about how I want to parent Simon overall.  Even though I loathe over-permissive parenting, I am realizing how permissive I have been with him.  It's no surprise.  This team is SOOOOO used to parents of medically fragile kids like me. We tend toward coddling and making sure our kid is "okay" and let naughty behavior go with nary a correction because they've suffered so much, etc.  It doesn't help that I was a very self-regulated kid so I didn't need much discipline and didn't really grow up with other kids around, so I have very little idea of what it looks like for adults to discipline/create structure for a child.

This permissive thing has been in the back of my mind for a few years now but I really saw it today.  He pulls stuff with me that he wouldn't pull with Laura, mostly because she doesn't let him get away with it. When I set clear limits with him at lunch, he totally got with the program.

I talked with the therapists at good length about how to frame things and when to play hardball and when to let stuff go.  One of the best pieces of advice was to take as many opportunities as I can to do practice this with him AWAY from the table so he gets used to me doing it.  Basically, set an expectation for him, stick to it and help him succeed.  Duh, right?  But it feels so unnatural and awkward.

Example: In the cafeteria tonight, Simon was riding in the wagon and kicked off his slipper on purpose.  My usual reaction would be to just pick it up, mostly because I didn't know how to handle it if he gave me attitude (which of course he would- who wants to get out of a pillow-lined wagon?).  Instead, I whispered to Laura "Okay, he kicked it off. What do we say?"  She thought for a minute and said, "Hey Simon, your slipper is on the floor.  Pick it up and then we can go upstairs" (something he wanted to do).  When he fought her a little, she had a "token" of something he wanted to bargain with and within 2 seconds he hopped out, got it and got back in.  Laura said she's started filing away all the things he's interested in (at the table and in day to day life) to use as "chips" in these situations.

I'm literally at that level of "what do I say in this situation?"and it's awesome to have therapists and Laura right there to coach me.  This program might be the best parenting thing that ever happened to me.

The Cauldron

Jaime-  I jumped into the Cauldron today.  That's how I've come to think of the super intense experience of sitting down face-to-face for a meal with this fierce little being.  Transformation of this magnitude in this time frame doesn't come without intense pressure in a contained environment.  Pressure cooker might be a better analogy but cauldron sounds a little more poetic, so I'll go with that.

We did breakfast in the 2nd floor cafeteria and I led the whole thing with Laura doing affirmations and the therapist sitting with us.  We had the magic breakfast burrito that has been getting inhaled in record time, so I was feeling good until, 4 bites in, things totally went off the rails.  

I don't even know what happened but all of a sudden the burrito was unwrapped, eggs were on the floor, Simon had his Hulk sneer going and I was scrambling to get things out of his reach before he could fling them at innocent bystanders.  My mind went totally blank and I felt completely at a loss for what to do. Like, dropped-in-a-foreign-country kind of helpless.  I've watched Laura do this, so I recognize the "language" and the "customs" and thought I could fake it,  but under pressure all that I can come up with is the ugly American schtick. 

The therapist started a steady stream of calm suggestions, mild corrections and affirmations for me and Simon.  I felt myself flailing and feeling more clueless and self-conscious than I have in years.  She helped me limp through it and we ended the meal with Simon consuming about half of what he normally does at breakfast.  I didn't feel defeated but I sure felt like I'd just gotten a call from the clue phone that this is going to be harder than it looks.  And it looks really freaking hard.  

Simon continued to be pretty grumpy all day and put up a good fight at lunch with Laura.  Fortunately (?) my Mom and his godmothers (who are the most likely to feed him besides us) were watching that meal remotely so they got a chance to see what he's doing, what we're doing and get running commentary from the social worker who was able to chat to them while they were watching.  

The afternoon snack was just me and the therapist with Simon.  It went south pretty quickly, with the therapist going to retrieve him  after he crawled all the way down the booth bench to a spot 3 tables over. She helped me re-direct him and we got him back on track. We ended with him not only eating what I asked him to but also the 3 Doritos I offered as incentive.  Dinner was led by Laura and went relatively quickly but he was still pretty grumpy.  I think he's trying to figure out who the hell is driving this ship. 

I'm still struggling to figure out exactly what my role is here and what it will be when we get home.  I want to take all of this off Laura's plate (pun intended) whenever I can...and...she's the "primary feeder" which means it's really mostly her for...a while?  We're both really grasping for some concrete information about what happens when we leave (in, oh, a day and a half).  Apparently we only pick one meal a day for the "therapeutic" meal and the rest are about having a good time and getting a decent amount of food in.  That's what I heard anyway.  I may tape our Friday de-brief because my head is swimming. 

We had a visit from our dear friend Bahar and her son Manav who we hardly see since they live in Nepal now.  It was so incredibly sweet to see Simon and Manav running around like they did when they were tiny little guys and catch up with Bahar.  Funny to do it in a hospital but we'll take what we can get.

I kind of don't want to leave.  We have a big room that someone else cleans, food delivered to us, on-site childcare, a team of people working really hard to help us...I'm a little terrified to try to do this once we get back into the big rushing river. I feel a lot like I did on the good days when he was in the ICU.  Life was very, very simple.  Hard and stressful and not perfect but edited down to the basics.  Food, sleep, people, Simon, each other.  

I feel like we're about to jump out of the Cauldron and into the fire...

Laura-  And Jaime is a champ. She's had about half the time that I did before jumping and stayed totally calm during her time eating with Simon.  He's working it out and a lot of  that means it comes right back at who ever is closest.  It meaning the food as well as the frustration. She is amazing and a total trooper.

We are leaving on Friday afternoon and I'm starting to feel like we are never looking back. Simon has not had a tube feeding since December 2nd and for the last week has managed to take all but one of his medications by mouth. The last one has to be given after he falls asleep anyway so....

We are solid. Mostly. Simon still needs a fair amount of hand holding (not literally although every once in a while he really likes to eat out of my hand- I can't wait to remind him of that when he's a teenager) but we are counting on the fact that he can eat enough to thrive now via his mouth and not the tube.

That hit me today. Simon has been dependent on a tube administering food directly to his belly since August 1, 2008. That's five years and four months of his life.It's been two and a half weeks that hasn't been true.  Bahar cried when she heard that. I'm still in disbelief and awe.  Both.

This is transformational.  

I may never have to make another batch of blended food again. We may no longer have 33 pump bags and extensions delivered to our home every month.

We may never need to carry around a $1200 piece of durable medical equipment where we go.  Someday soon Simon may only be a human of flesh and bone without an extemporaneous piece of plastic and latex lodged in his body.

This is huge. I felt it for a brief moment this morning during snack and then tucked it neatly away (but not too far) as I encouraged three more bites of apple cinnamon muffin.....Which he ate.

Dude.

DJ Mama

Bahar and Laura

Simon and Manav playing tag

Moving so fast they're blurry!

TAG!  You're it!

Also, this is Jaime trying the 1200 calorie (12 oz) peanut butter chocolate shake that the food service folk make. Simon gets 2 oz mixed with 2 oz of milk. Jaime drinks it straight.

 First glance

 First sip

 First taste

 ...and it hits

 .....how can this be so good?

back for more. Please note the glee in the eyes. 

 It's like when Bruce the shark gets that little whiff of blood in Finding Nemo and his pupils go all big.

Just like that.

Recipe:

1/2 Cup Heavy Whipping Cream

2 TBL Creamy Peanut Butter

3 TBL Chocolate Syrup

9oz Chocolate Ice Cream

Enjoy

Dude!

According to Crush, the talking turtle, "dude" is the most essential word in the turtle language.  It can mean so many things.  If something is a total bummer, you can say "duuuude" kinda slow and sad, with a little head bob.  Yesterday would have been that kind of "dude"   If something is funny, can say, "du-hu-hu-hu-de" with a chuckle. A  day like today would be "DUDE!" as in, "you so totally rock!"

Started out with breakfast in one of the cafeterias, with Laura and I co-leading, and a therapist at the table with us. We had the ever popular breakfast burrito (with flour tortilla this time) and Simon was taking such big bites we all looked at each other kind of worried that he was going to choke.  But instead he totally plowed through his meal with only a little pushing back and both of us working with him (Laura doing 85% of the talking/coaching).

We tried snack outside at the cafeteria patio with just the two of us, and again, awesome meal.  We were both kind of waiting for the other shoe to drop at lunch, but instead...well, Simon busted through his meal so well that the therapist felt fine getting up to go say hi to another family towards the end because we were doing fine.

After the meal, (I was upstairs returning our wagon) the therapist apparently said to Laura "I haven't brought it up with the team, so it's a little premature, but what do you think about leaving early?". Laura looked at her and flat out said "No". We both want me to be able to get as much practice and coaching in as possible so I can take on as much of the work as I can.  When I came back down, she brought up us leaving early again, I think mostly as a form of affirmation and then said, "I think Laura should ditch this chaplaincy thing and become an OT. She's too good. She's just too good".  What do you say to that other than, "I know, she's kind of the greatest thing since sliced bread, right".

We talked about the next few days really being about me getting up on the horse, so to speak, which kinda scares the shit out of me. It also kind of feels like a set up for Laura to possibly feel crappy b/c I'll probably get smooth sailing since she's done all the hard work for me.

It's the plight of the primary parent, the invisibility with the reward for hard work going to other people.   As primary parent Laura is busting her ass at home all day/in the therapy sessions all week and then I come home and voila the kid is on best behavior and is doing whatever he's supposed to be doing and it all looks easy from the outside.

Even though I *think* I know how much work she is doing and try to affirm and give credit wherever I can, she's been doing this stuff mostly alone, with no one to really SEE her.  She does about 9 million things in service of our family and especially Simon, but especially the feeding.  That's one of the best things about this program besides Simon eating- this team of professionals is really SEEING her in her (sort of) natural habitat day in and day out.  They really see her and they are pretty much saying "duuuuuuude" in the awestruck-by-someone-ripping-a-totally-gnarly-wave sort of way.

To say they are in awe of her doesn't even begin to capture it.  I see it in their expressions, I hear it in their words and it thrills me to no end.  I can tell they're not just being polite or "cheerleading".  They have watched her manage one of the hardest experiences any parent can have and are pretty much standing lined up, clapping.  I have tears in my eyes just writing about this.

One of my top priorities in life is to make sure that Laura is doing as okay as she can be and that's she's feeling loved and appreciated and cared for. There are ways my words are platitudes sometimes, that I can't quite soothe that tender spot for her because I *don't* see what she's really doing. This team is able to do that for us- they're able to see and affirm her in a most authentic and real way.

It's...well, it's the best Christmahanukwanzaka gift a girl could hope for for her wife.

It's just not easy

We had such an amazing weekend. I was sure that this was *it*, that we had crossed over. I was sure that it would just be smooth sailing from now on, building on the independence and volume that we'd seen over the last 48 hours. So sure in fact, that Jaime and I were so excited after Simon went to bed that we stayed up till 11:00 just chatting and blogging and dreaming. We dreamt of the removal of plastic medical devices, the return of durable medical equipment, travel, and a much simpler life.

Then came breakfast.

Jaime was included right away as an active observer and cheerleader since we've come so far. Simon however wanted to not be included. I don't know whether it was coming back to "hospital food" after a weekend mostly out and about, or he was just having a morning. Whatever it was it felt like we were back in last week with the pushing away; both himself and the food. There was whining and grunting and even some throwing. Simon was doing it too, just outwardly to my inward.

 I was ready to pound my head against the wall. Really? Again. We were back here again?!

Jamie, the unicorn and rainbow therapist, was very clear. It's not a completely linear process. My brain gets it.  Being five and trying to develop into a contributing member of society is not a linear process.  I think the same is true about being 40, but this is not about me.

Simon and I had a hard day. We had hard meals, with dinner ending abruptly and a loss of playroom time as food got spit out on to the floor with only two bites to go.

Friends, I'm tired.

I'm tired of having so much of my day be focused on trying to get Simon to do something that he doesn't want to do. This is beyond your average parenting. This is beyond parenting plus. This is hyper-condensed parenting plus.

And here comes the bitter bitch rant.While I am so grateful beyond words that Jaime is here and providing so much support, it's also so much harder having to share Simon when the share is so totally lopsided. Jaime gets to observe and cheer lead. I get to set intentions and stick to them. Jaime gets to affirm Simon for his new skills and then take off with Simon to do something fun after meals to give me a break before the next meal. I get to plan menus and shake off all the excess energy from remaining calm after having my knee hit multiple times and food thrown across tables.

We have just been giving the green light to co-lead which is very exciting. This means that we can practice with her leading and taking the firmer line position. I am so ready and so nervous about what this means. Even before coming to CHOC we would take some meals and have Jaime work on being the primary 'feeder'. These meals rarely went well. I think by time we got to Dec 1st we had come to some kind of understanding that Simon would just eat more with me than with anyone else.

I'm tired of that understanding. I think we'll get to another understanding of it some day, but it feels far away right now and I feel sad and scared about the backtracking. I know Jaime is ready and willing. The question is more about Simon being ready to feel challenged and supported by someone other than me with this new protocol and set of strategies.

We have 4 days left and then we get to/have to go home and figure it out for ourselves. I know we will continue to have the support of the CHOC team as well as our amazing team at home and....for most meals of most days it will just be us...............and that feels mostly like me.

*cue soft and sad violin*

We have come so far and even the frustrating moments and food not eaten of today are not even close to the frustrating moments and food not eaten of two+ weeks ago. I know that the work of these 3 weeks and the months that will come after mean the years to come will bring freedoms and travel and health and growth that wouldn't be possible without this struggle. I'm still bitter tonight that I had to take away playroom time and Jaime got to take Simon around the floor to chat with nurses and share goodies.

She's still my favorite. He is too.

                                                                   Heading to Breakfast

 Mama gets in the ball pit

 MM and PopPop visit!!

 Race!

3 More packages today with treasures!

Kind of like the Royal Wedding

Jaime= Pippa?

Also, for those of you wondering what the freaking frack "Turtle Talk" is since we talk about it non-stop, here are some little samples:

 http://youtu.be/7EyHZzWaDNI

http://youtu.be/mef6jPHYHn8

Thank you Friends for all the love and support. You have no idea what it means to me, to us.
We are blessed.