Deep Thoughts with Jack Handey...

Yet again, this is not the topic that I have been mulling over in my head.  But its prominence has pushed the other topic out of the way...  For now....  

It has dawned on me why I have been stuck with my weight loss, teetering between 174 and 178, since July.  It occurred to me in an early morning epiphany.  It jolted me from a dead sleep, even.  It has nothing to do with my diet or exercise, actually.  I forgot to keep accepting myself.  I've become impatient and focused too much on my dress size instead of my wholeness.  I've even found myself feeling "fat".   

I had to remind myself that the first thing that I did when I got my motivation to change my lifestyle was to accept myself in all my glory of 263 pounds.  The pressure immediately left me.  I was already awesome, I just made small steps to be more awesome.  I was beautiful at 263 pounds, I'm still beautiful at 176 (that's what I was this morning).  I will continue to make steps in the right direction towards my total wholeness.  

As proof of my growth, my friend even took a picture of ME that I actually like.

I love how dorky I am!  :)

The Early Bird Special

A couple of weeks ago, Javy's teacher asked about why Javy seems to have a hard time swallowing and gets choked up.  She asked if he'd ever had a doctor say that he needed to be on a special diet.  I kind of shrugged it off, because this had been a concern of ours when he was younger.  His speech therapist at the time had recommended that he have a swallow test.  That's when they take an X-Ray of his throat while he's swallowing some food.  His speech therapist and pediatrician were present and they said everything looked fine, he swallows normal.  We accommodated his tendency to swallow food whole by just making sure that his food was cut really small so he wouldn't choke.  Life went on.

Until his teacher brought it up, again.  Because I live a drama free life and am open to all possibilities, I accepted that the teacher's concerns might be valid and this issue may need to be readdressed.  In other words, I didn't freak out.  I told the teacher that the person to talk to about this would be a speech language pathologist and I know an excellent one.  But the teacher said that she'd just bring it up with the school's new speech therapist, who I had yet to meet.

A couple of days later, Javy's crack team of educational professionals and his home team, met up for his annual IEP meeting.  It was there that we met his new speech therapist and I like her.  She was right on this whole swallow thing.  She seemed to be geeking out on it and I love it when specialists geek out about my son's conditions.  In my experience that usually means that they're going to follow through until they solve the problem.  And then I usually get to geek out on it, too.  Staying up all night, Googling stuff.  It's a vicious cycle.

Anyway, she explained that the way Javy's mouth is shaped, he has a hard time manipulating the food with his tongue so the food gets swallowed before its chewed properly.  At this time, the light bulb went off in my head!  Ta Da!  It's because his palate is small.  That's been one of the observations made by the geneticists since Javy has been seeing a geneticist-narrow palate.  I asked the speech therapists if its possible that as Javy has grown, it's just gotten worse, creating this new concern.  I had noticed it, but I contributed it to Javy laughing uncontrollably and getting silly when I was trying to feed him.  It was a point of frustration for me.

The ST agreed to do an evaluation on him, but in the mean time she gave me a few things to think about.  Feed him softer foods at night, because its probably very tiring for him.  (I had never thought that eating could be tiring, but it made sense)  And also eating dinner earlier.  I have no problems with this because I grew up at grandparent's house and grandma sometimes had dinner on the table as early as 4:30pm.

Yesterday, I actually got a house call from the ST, because she lives down the street from us and that's just how we roll in Hawaii.  (Awesome!)  She gave me a name for Javy's swallowing disorder-dysphagia.  I've been trying to geek out on it but I feel like I have ADD right now.  (I got glutened the other night, handling dog food of all things.)  I'm impressed that I'm even able to write this, I tried last night, but couldn't get it to flow.  There's a lot of stuff about dysphagia, and I need to wait for the ST's report to figure out what's best for Javy.

It's just another reminder that we can never get too comfortable in Javyland.  We'll see you at the buffet.  

Grace!

I just want to follow up a little bit on my last post, "I'm in his World Now."  I, actually, have a couple of other topics brewing in my head that I was going to sit and write about, but this came to the forefront of my mind.  And since I don't like to think too much about what I write about, I'm just going to go with the flow and let me heart do the typing.  But just expect a great influx of blog posts in the near future, because there are changes happening in Javyland, even right now.

I'm very excited about all the possibilities that are going to occur and also, what I will learn from them. One of the lessons that I've learned just over the last week, is that I've got a lot to learn.  Hey, its the first step.  This week, I've learned a lot about Javy through the eyes of an older person.  I'm not talking about their 60's or 70's but a person approaching the century mark.  Like Javy, their body or their mind doesn't function 100%.  But they still deserve respect.  Their bodies and their minds are still their own and we have to give them the time and space to do what they need or want to do.

So I'm coming to terms with exactly what my role is in Javy's life.  Yes, I'm Javy's parent.  Most parents get to train their child in the way they should go and then send them off to a life of their own.  That's not how its going to be for us.  I think it would be a very boring life for both of us, if I just tried to fit Javy into my boring life of work and whatever I consider to be fun.  I've decided to follow his life and what he considers to be fun and important.  I honestly believe that's why I was put on this earth.  Hopefully, from our experiences, I will be able to educate and bring that world to other people's understanding so that we can all give and receive a little grace. Ahhhhh, such great relief, I finally have a vocation.

I'm in His World Now!

When Javy was little, he had this T-shirt.  It had dinosaurs on it and it was from some natural history museum, I think in Indiana or some place we'd never actually been.  I bought it at a thrift store, probably.  But on the back it said, "You're in their world now."  That phrase came back to me the other day, in all places, Javy's IEP meeting.  I think I finally get it.  The teacher asked where do we all want to see Javy.  My response was simple.  I just want him to move across the floor independently and communicate in a meaningful way on his own.  I could care less if Javy can pick up a crayon or stack blocks, just because that's what kids are supposed to do at a certain level.  When Javy is interested in something, I've seen him use his pincher grasp and turn things side to side.  I'm done trying to fit him into this narrow box of societal rules and regulations.  Let him squeal at inappropriate moments and drool too much when he's having bad days.  I just want Javy to do the best he can and enjoy life in the moment that he's in.  The reality is that this our life, and its just the way its gonna be.  Just got to get on with it.  I'm going to give him more and more opportunities to just be himself and try new things.  As a parent and a teacher that's the best we can do for our kids, is give them plenty of room to grow.  

I'm really not Supermom!

So here it is....  I screwed up last week.  By the way, Javy has been in school for a full month  I love what the teacher is doing with Javy.

We noticed that everyday he was coming home with some kind of hair goop and his hair was all spiky.  I just figured the girls in his class were getting to play with his hair and fix his hair up.  We got a note last week from the teacher.  It said something to the affect that we may have noticed that he comes home with his hair all dolled up.  First thing in the morning they fix his and his other classmate's hair. Then they take them to their General Ed peer's classroom for some social time.  She feels that its important for him to fit in and have his hair all nice.  I totally approve of this and think its pretty cool that he gets to hang out with everyone, not just his Special Ed class.

But then it made me take notice of his hair, it was kind of scraggly and getting long, like the pre-Keanu Reeves length.  I decided that I should trim it.  I started on the side, cutting off his faux pork chops (sideburns).  Couldn't quite get it even, but I got it close enough.  Then I noticed that he was looking a little too much like John Stamos from the "Full House" years and I didn't want him to end up on "The People of Wal-Mart".  I tried to get the back straight, but it looked too choppy.  I decided to try trimming the back and the sides with the clippers.  I don't know if all the pressure of having to cut a big middle schooler's hair got to me, but I ended up just buzzing the whole thing.  Javy got so mad at me, I had to stop in the middle of it because he was full on giving me the droopy face-the complete upside down smile.  I really think that he realized that there would be no more getting slicked up for the girls at school.

Pre-Haircut

Buzz Buzz!  Won't even look at the camera!

Forgave me by Saturday, but only if he could use me as a flotation device!