Monday, March 28, 2011

Big Changes at Chez Fitch-Jenett Part Deux

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What Jaime said...And, over here in the internal world of the Fitch, it so much more complicated and likely why I have not written yet on this monumental marker that is coming up.

Simon is turning 3.
If you want to check out what happened last year, go here ( Beginning )
It's not an easy time for me. To have it coincide with so many other beginnings and endings, well, I feel down right exhausted.

The IEP was not an easy process in and of itself. Full of contradictions. It was so great and heartening (hah) to watch Simon be totally himself during each and every assessment. He did such a perfect job of showing folks what he could and couldn't do...all with his own particular brand of enjoyment.

And good on them (all of them!!) for listening to me tell them what they might not see during their one or two hours of 'assessing' my child.

There it was, all of it, right there in black and white in their reports. How lovable and personable and resilient and well-cared for, and steady and secure this little boy is. How amazing it is that he can count to ten in three languages AND what a large vocabulary he has! And, oh yes, how he is delayed here and delayed there and delayed most everywhere.

{Most amusing is where he lands on the self-care/eating scale- 1 month old. What one month old gnaws on a BBQ rib bone with spicy BBQ sauce remnants or asks for Thai green curry by name not to mention licks copious amounts of straight up cumin and paprika right out of the spice jar?}

Delayed and very medically fragile.

It was so hard to read all of the ways in which the school nurse (bless her heart- hah) made sure that Cardiomyopathy was laid out for every person that would read the IEP; how serious it is, how it can result in hospitalization or worse, the symptoms, the invisibility of it for some kids, the weakened immune system, blah blah blah....all of it right there on paper laid out neatly in organized paragraphs with links here and a statistic there. And thank goodness she heard me when I said that it's one thing to look at Simon, listen to him talk, feel his arms around you, see the light in his eyes, the joy in his smile, and believe that he does in fact live with this very serious, sometimes fatal, always medicated, up and down, not very well understood, stooooooopid fucking disease. She got it.

Sitting around that table listening to all the assessors and administrators give their reports, it was a true blessing (that I know from experience not every family gets) to feel like every single person at the table got a very complete picture of Simon.

Where he needs support, for sure. His strengths, yup, got 'em. But, they also seem to get something else. The mind bending, paradoxical, deep teacher that Simon can be, in how he lives with contradiction.

And so looking at what he was offered, what he will receive, what we will continue to push for (Part 1), I feel that we are so on track it couldn't have gone much better if I got to puppet master the whole thing myself.

Still, taking him to all those assessments, seeing so many of things that he can't do (over and over), filling out those awful developmental questionnaires, explaining over and over again that how he looks and acts belies the serious (and uncertain/unpredictable) nature of Cardiomyopathy, I began to  simply take in the fact of what this transition means. I will no longer be with him.

I won't be with him.

I know it's only for 2.5 hours a day (4 days a week) plus or minus some time when he starts taking the bus (which he has already expressed interest in). Still, that's more time than we've ever had apart before.  Who will help him up when he falls down? Who will notice when someone has taken something from him? Who will notice when he's taken something from someone else and teach him about sharing? Who will notice if he's playing by himself?

And then the parenting 'plus' moments. Who will notice when he's nauseated and needs to be reminded to breathe through it? Who will notice if he's sweating and or breathing hard? Who will help him when he gags or throws up? Who will be there?

I know all the answers and I even think I have a sense of what's rational thought versus irrational. I know there's risk involved and I know that this is what's right for him. I also know that it's more than likely that he will handle this transition so gracefully.  It still doesn't change the fact that I have been with Simon for 3 years. I have been his Mommy, caretaker, nurse, advocate, teacher, Speech, OT, PT, Feeding therapist, and playmate for three years. THREE YEARS.

Yes, other people have been there for sure. Jaime of course, Dianne, Aunties, Reagan (babysitter extraordinaire) AND that's not the same as being the constant Monday through Friday, every appointment, every Parent Infant Program, every wake-up, every nap, every med, every tube feed, every laugh, every change of clothes, every every.

I'm going to miss him. My life is going to change so much.

And not.

The reality is that I will likely only have one and half hours to myself. Between the drop off and pick up and the minutes of transition in between, it's barely enough time to come home, grab Roxie, and make my way around Lake Merritt at a run-walk (get your body back) pace.

Another contradiction.

I'm having a really hard time holding the truth of what's coming because the truth is I have no frikkin' idea AND I have to say I'm not that great with change to begin with so...what's happening?

Let's recount.

Simon is going to school.
Simon will be cared for by people other than me.
I won't be there.
He will get all the services that he needs.
I won't be there to see what they're doing.
It's 2.5 hours every day (except Wednesday when we have Feeding Therapy in San Francisco).
I will have 1.5 hours, 4 days a week, after drop off and drive home, minus time needed for pick up.
Simon is going to school.
He will wear a pack back that contains his pump, tubing, and blenderized food in it.
Simon will wear a back pack! (too cute visualization there).
I will miss him.
We will still have 6.75 hours a day together after school.
Simon will have fewer appointments throughout the week. (Unclear how many but we're working that out with OT and PT through our insurance).
I will miss him.
I will try and spend 1.5 hours a day doing something that is good for me.
On April 7th, Simon will graduate from PIP.
On April 9th, he will turn 3
On April 11th, he will start his new school.

I can't quite hang with all this change. I feel like my world is looking a little like some of the dreamscapes from the movie Inception where entire city blocks curve up and over like a tidal wave or the center of gravity keeps changing and alternating depending on the people or four walls around me.

That, and the endings. We have one more session with Cece, our beloved speech therapist (Simon had less than ten words when we started- just last June!!!), four more sessions at PIP, four more parent support groups for me, maybe one more home visit from Marybeth.....all these people that feel like they've been in our lives for so long! I hope that some of those relationships continue, I know some will and some won't.

I literally just took a deep breath and tugged the short hairs on either side of my head without realizing it until I heard Reagan laugh at me.

Change is hard. Big Change is harder.
Letting go. Riding the wave.
Pulling hair (not out. More like in a massage sort of way) apparently helps.

I'm sure there's more to come.

Jaime and I got 20 minutes to connect tonight before dinner and bath time, etc. We talked about both feeling this deep sadness, grief even. Simon is about to go out into the world in a whole new way and it is without us.  He will make friends, have new adults in his life that will offer support, learning, comfort, and love. It's not I like think he's going to replace us as his primary people but more that we are having to share him.
For sure it will be a splendid thing that we unleash unto the world. I mean c'mon, the world at large could certainly use and only benefit from a little more Shimmy La in it. But I guess there is this little wonder in my head "there's enough to go around right?"

All signs point to yes. He is love straight up.

On that note I have to share simple deets from our cardiology visit today.

No change in function from a month ago (not surprising!) but there was a change in the nature of the visit (the last three having being pretty rough in terms of how the Shimster handled his ECHOs and dr's visits.)
Dude was a dream. No fussing, no squirming AND amazing hugs and thank you's to all of his peeps. The ECHO tech, the one from last time, the admin woman, the EKG tech, HunkyPants (who got a resounding 'Rosenfeld!!' when he passed by the door the first time), and the resident who did his blood pressure!
Little man was straight up love today. If he can do that at a Dr's appointment then I am not worried (99%- ok?) that he has more than enough love to go around.

Last image:
Last night Simon was newly stripped down for a pre-bedtime bath. I made some benign comment about his bottom. Probably something along the lines of "what a delicious tushy you have!"
His reply "Tusheeeeee. Hug it...............Love it"

Hug it

Love it.


Big Changes at Chez Fitch-Jenett

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We had Simon's Individualized Education Plan (IEP) meeting with *8* reps from the school district and Simon's current Early Intervention Program last week to review what folks found in their assessments of him, what they thought he would need to address the findings and what the district would provide. It was a fantastic meeting- sort of the model for how an IEP should go- and it was hard. We (my Mom, Laura and I) sat for 2+ hours listening to these smart, observant, caring people articulate all the ways Simon is delayed and all the creative and brilliant ways he compensates. It's intense to have your child "scanned" as thoroughly as he was.

He had the following assessments:

  •  Status 2 (to check for mental retardation and autism)
  •  Occupational Therapy
  •  Physical Therapy
  •  Speech
  •  Psychological
The findings varied, but the bottom line is that in some areas Simon is only about a year delayed and in other areas, he's at the level of a *15* month old. Uniformly, every assessment commented on what a sweet, happy child he is. It was almost comical to see almost the same words over and over in each assessment. And quite lovely.

 Here is what the district has offered:

  •  a special day class (yea!!!) with 6 children, a teacher and 2 aides (yes, that's a 2:1 adult to child ratio!) Monday - Friday for 2 1/2 hours
  •  extra Occupational Therapy once a week
  •  extra Speech Therapy twice a week (with a male speech therapist- yea testosterone!)
  •  Physical therapy consultations as needed
  •  a site visit from a district nurse every month to check in to make sure things are still set up for him medically (handwashing protocols being followed, etc).
  •  All the adults will get trained on how to do Simon's tube feedings.
  •  a bus to school once we think he's ready.
Laura and I are thrilled.
And a little bit terrified.

We are handling these upcoming changes...moderately well.  I think we're both struggling with what it means to hand over our child to other people, even if is only for a few hours a day. It feels like this is the beginning of a much bigger process, of Simon becoming ever increasingly independent.  This is, of course, hard for parents of typical children, but I think particularly hard for parents of kids that are considered medically fragile.

Suffice it to say we're having some big feelings at our house.  We haven't quite figured out how to talk about it yet, so it may be a little bit until we can articulate them here.  In the meantime, we wanted folks to have the nitty-gritty since we had the IEP. 

We're going to visit the school on Wed to make sure we think it's appropriate for him and then, assuming we give the green light, he'll start April 11th!