Tuesday, February 25, 2014


We sent it back.  We sent the pump back to the insurance company.  We were terrified and excited and sort of stunned that it was already time, but we sent it back.

Simon has not had a tube feed since December 2nd and while it's still a lot of work sometimes (understatement of the year), it's starting to feel *sort of  normal* to sit down to a meal with him and EAT.

Laura and I are exhausted.  We are still trying to process the emotional fallout of all of the wonderful and hard and amazing things that have happened in  the last 4-6 months.  We are moving into every corner of our expanded home and learning how to live without the security of a feeding pump.  We are struggling with flashes of PTSD from being in a hospital for so long again.

Our child's behavior often resembles that of a honey badger.  It feels like every single transition causes him to have an epic melt down.We are parenting a child who is doing his very best to fight against the tighter and tighter expectations of him.  I never realized how hard it must be to be a child until I had one.  We make children do things they don't want to do from the time they wake up in the morning until they go to bed a night. Take off your pajamas, eat your breakfast, put on your clothes, ride the bus with a bunch of other kids to school, sit in a room with 10+ other people and pay attention, write your letters, listen when you're being spoken to, etc, etc.

Because so many things are a challenge for Simon, often these requests send him into a rage.    Part of me loves that he is fighting to do what is natural for all children- to do what he wants, when he wants, all the time.  And part of me is so so so tired of it.  I start to spin out about how he will function in society and if this is our fault (did we create a little "prince"?), and wonder if something else is going on that he can't tell us about (is someone hurting him/touching him inappropriately)? I also have to remember that he's been diagnosed on the spectrum and that transitions are a lot harder for him than typical kids.  I just can't tell what's "normal" and should be sharply corrected and what is "spectrum" and needs a little massaging.  Ugh.

Every once in a while, I can step back and realize the monumental changes we have gone through, especially the feeding program, in the last 2 months and am not at all surprised that he's pissed.  That is one hell of a lot of change to take in at one time.  We're reeling.  I'm sure his curiously organized little brain is on overload to re-wire everything.

He has his own room now and his toys are easy to play with so we watch dramatically less TV than we used to.  We leave him by himself in his room to play sometimes BECAUSE WE CAN.  And he understandably gets pissed because we have not lived out of earshot of each other for his entire life until now and he wants us to come back.  Eating is still not totally effortless,  so he basically has to sit down to do his "homework" 6 times a day when he eats a meal.  I don't know about you, but that would make me surly.

He has moved from an integrated class with 27 kids and 3 adults to a special day class with 11 kids and 3 adults.  It's going better for him, we think, but the social gaps between him and other kids are still huge.It's heart breaking.  The other day I asked him who he played with at school and he said "No one!".  I asked him if it was okay to play by himself or if it was lonely and he said, "lonely". I had to fight back tears.

One bright note is that we had friends over the other day who have a son about Simon's age who is also on the spectrum. I'll be damned if that didn't end up being the most typical playdate I've ever seen Simon have. Simon can initiate a social interaction but not keep things going and the other boy can't start an interaction but he is better at keeping the "volley" up. Before we knew it, they were curled up together on Simon's bed looking at books and chattering to each other.  The adults took turns sneaking peeks around the corner and silently squealing. We have another date scheduled already. :-)

We are also on the precipice of a HUGE thing.  Since Simon got officially diagnosed on the autism spectrum (a year ago?) we have been working to get ABA therapy.  It's a super intensive, highly effective intervention that helps kids on the spectrum learn how to...basically function better in this totally overwhelming world. We know a couple of families that receive it and it's changed their lives.  Laura spent literally hours getting switched from department to department to figure out who the hell authorizes it and can get the ball rolling.  Yesterday we FINALLY got the right people and hope to be able to start in a few weeks once all the paperwork goes through.

I have felt so out of my league the past 6 months as Simon has started having a harder and harder time with transitions and meeting expectations and huge outbursts, etc.  I just have had no clue what to do, what's appropriate, what is him just having feelings, how to help him, when to comfort and when to push.  All of it.  Just lost.  I feel like we're getting thrown a life preserver with ABA.  I don't know if Laura feels like she needs it as much as I do, but I've been feeling pretty desperate for guidance.  I want to cry with relief.

Simon is still struggling with the social emotional piece, but damn if that kid isn't reading!  Every time we have a condiment bottle on the table or pass a billboard or sign, he tries to sound out the words.  It's stupendous.  For the first time, he's at the top of his class with something.  I know it's totally obnoxious to brag but our kid has been so out of sync with what's "typical" that I'm ready to have a party for being not only on target but maybe even a little ahead in something.

Our boy is quirky and hilarious. I've been noticing that every morning when he wakes up, he leaves his room and closes the door behind him.  I couldn't figure out why he does that with his door but none of the other doors in the house when he leaves a room.  We also have noticed that every morning when he wakes up,  he pads all the way across the house to our room and shouts out "Guys!?  Is anybody home?". Every time.  No clue what this was. Last week, I put two and two together.  Monster's Inc.  He's being a monster. He closes the door because it's what every monster does when they go through a door so kids can't come into the monster world. The line he calls out every morning? It's from Monsters University, when Sully and Mike are walking through a dark house.  I still chuckle every time he does it. This kid is a crack up.

Also, like almost every other kid between the ages of 4 and 7, he is totally, completely, over the top into Frozen.  "Let It Go" is on a continuous loop and we are all alternately Elsa or Anna. It's fun to see him so into something popular!

Princess Elsa, spinning ice and snow
"I'm the Queen!" he declared

Urban hipster
Moody teenager
 Oh, and he was the poster child for Children's Hospital Oakland this Valentine's Day!