Sunday, December 8, 2013

Opposite World or Weekends Suck

Not everybody's working for the weekend.

Holy Hell.

I mean that in a true and deep way.

It is my understanding that parenting in general is holy work. This parenting plus stuff keeps me even that much closer to the Spirit and I'll be forever thankful for that...when I'm feeling meta which I have to say, this last week, is not very often.

I know that I am growing a human being and it is my job and my hope, to keep him as close to his perfect self that he was born with for as long as I can. I do believe it is one of my essential responsibilities and passions.

And, this last weekend was also a little slice of Hell. I'm not even sure how I would define Hell but seriously, if it has anything to do with being with people that you love so so dearly and not being able to actually be with them in any fashion that is familiar or pleasant, in one case really the opposite, then sure, let's just say that this last weekend was Hell for me.  (Spell check keeps wanting to change that to he'll but I won't let spell check try and make it all about Simon. This is about me gosh darn it).

Jaime got in late Friday night and it was simply delightful getting to hold her and download even just a little of what's been going on. I mentioned how the team really expected Simon to start having pushback  and were kind of sickeningly pleased to see him start it early. "Ahead of the curve," they said.  Little did I know that this also meant that the pushback would only intensify over the weekend when it was just going to be me and him, six meals a day, without the aid of his appetite stimulant and/ or Jaime who is not even allowed to be present for meals and snacks during this first week.  Just Simon and me six meals a day for two days.

It started out as I expected. A little breakfast, a little pushback. Ok. That was the hardest meal we've had in a long time and he hardly ate. No worries, we have another meal and clearly he'll be hungry for this one since he barely ate anything for breakfast. I can do this. No problem. One meal he'll eat less and then the next he'll be hungry again and I can work with that.

So wrong. I was so very very wrong. From breakfast on things just went downhill faster than a homemade soapbox derby car where you've forgotten to add brakes and remember halfway down a steep hill. I have never been bit, scratched, or had so much food thrown at me. I have never felt anger and frustration course through me but need to portray the exact opposite....for 45 to 60 minutes at a time.  I have never loved someone so much as I love Simon and be totally unable to feel it as we are struggling with something as simple as getting through the last 4, then 2, then just one (with a last drink) bite.

I'm not supposed to ask yes or no questions. I'm not even supposed to ask open ended questions. I can re direct, give choices, distract and then refocus, ignore most but not all bad behavior, keep
accountability, affirm and compliment with specifics, keep portions appropriate, keep in mind intentional volumes but not get into power struggles, model eating but not focus on my own eating, and not let it all drag on for more that's an age appropriate time to be sitting with a five year old. Oh, and I can use incentives but not really distracting ones while eating. Fun when your child is getting so frustrated that they will grab anything and everything within reach and throw it.

It starts at 8am. We have a 10:00am snack. The there is a 12:00 lunch, 3pm snack, 6:00 dinner and a 7:45 last snack. All but the last one usually last between 35 and 50 minutes including cleanup. Last
snack is usually shorter but not by much. If he throws food on the floor he has to clean it up. If he
begins playing with with utensils as a stalling tactic I have to take them from him. If he wants to play
and distract, I have to play along but bring it back to choosing what his next bite is going to be or have him choose the next activity after the meal but remind/ ask him what he needs to do to get there.

Add in the not insignificant pragmatic and expressive language challenges Simon has, and the last 12 meals make for some of the most challenging interpersonal interactions I've ever had. Please remember that I am a former social worker, camp director, and chaplain in training. I am also five and half years into being the mother of a child with significant medical and developmental needs. So in less eloquent phrasing, this past weekend was really fucking hard.

My wife, my love, my partner, Jaime was amazing. She showed up. She played with Simon. She let me cry. She touched my hand, my back, my cheek, the back of my neck, just to let me know that she was with me. She told me to not come with them in between meals when Simon was free to hang in the playroom, the radio station or just roam the halls. She went out during our eating sessions and did laundry, bought real food, and just in general affirmed that she saw how hard this was.  I love her. I appreciate her so much.  I can't believe she's gone for another five days but then will be here and actually get to be a part of this whole process. I'm wicked lucky and I know it.

I know I've forgotten some key components of all that I've learned but there it is. That's some of what we're doing. I won't lie. I like it much better when there's a feeding therapist doing half of it during
the day. I like it much better when it's them for two meals and snack and me for two snacks and one meal. I like that balance much better than just me for all six.

So, here's to another week. Here's to breaking through this boys incredible pushback and to some normalizing and internalizing of a typical meal. Here's to support from an incredible team and family and community.  Here's to getting to the halfway point this coming Wednesday and then knowing that  we've been here for longer than we still have to be here.

Here's to it.

Oh , yes. We had visitors and managed it quite well. Steep learning curve we're on but we're working it.
Mad love to Linda, my shvester and family, Chris, and Kathie & Tara for helping pass the time. Mad mad love.


Mama Kat said...

some serious mad love to you as well. I think you are incredible, and your wife might just be my new BFF.

andreana clay said...


Sarah Andrade said...

Just so you know, even though I haven't met you or Simon, I'm following your journey from the cyber sidelines. Watching with wonder, awe, and hope...and even sometimes, pity. What's amazing is how little pity there is and how much hope and amazement. I'm so proud to know your family, if only through this distant and intimate medium of language and screens. I can't think of anything better I can offer than my spiritual support and cyber hugs, if you will, to you. I commend you at not throwing food or utensils back at Simon or at the wall. I know that the mental, physical, and emotional strength it takes as a parent to contain your wild fury is one of the greatest challenges we endure. It's worthy of trophies, awards, and cash prizes. Ultimately though, we know that we prevailed against our anger and frustration for the love we know will return, within minutes, for our children. They are allowed to let go of our hearts for a few minutes now and then, I suppose. Sending love and and the hope of self-care for you and Jaime, and praying for lots of progress with his eating program for Simon.