Jake’s Fingers: Guesswork in the Maze

I’ve learned that part of being a mother is seeing my child behave very differently in public than he ever would at home.  We’ve all heart the mother say, “I’ve never seen him do that before” and we’ve all thought right back at her, “Yeah, right, lady.”  But, I’m serious!  I’ve seen Jake throw unholy tantrums at the slightest touch during his physical therapy and I’ve also seen his sweet little face aglow in his halo as he eats crackers and turnips, acting like he does it every day.

Today we hit both sides of that “whose child are you?” spectrum.

Becky started off by trying to do some physical therapy since it has been a while since she checked in on that part of his psyche.  We were trying to get him into a “high kneel”, the kind of kneeling where you don’t sit back on your feet, and all of a sudden, my little Jake went ballistic.  He screamed, threw himself everywhere, and chucked a toy across the room.  Becky and I were so surprised we both started laughing, as we gathered him and his various toys up and tried again.  We didn’t push it since we need him calm and happy for his feeding therapy, and let him gleefully whoosh down the slide a few times before we headed off to the feeding room.

Once we were there, Jake put away the horns and tail and pulled out the wings and halo.  He ate every single thing that Becky presented him with, even the dried pear.  He calmly “bit and pulled and chewed” it, which is something we’ve been working really hard on getting him to do the right way.  Then, he ate a chicken nugget, an item which I have been presenting him with no luck.  He chewed, smiled, and even opened his mouth to show it was all gone.

Usually this would all be really exciting, but since this is the third week in a row that Jake has been drastically different at therapy than at home, I felt my heart sink.  The honest truth is I can’t figure out why Jake and I are working three months behind Jake and Becky.  There are a ton of simple reasons such as children often behave differently at therapy, he loves Becky and wants to impress her, she isn’t with him all the time and eating is the only thing he has to do for her, etc.  There may be more to it, though. 

So, this week, I have to figure out how to make our home environment different.  Music on, music off.  Lights on, lights dim, lights off.  Benik vest on, Benik vest off.  Different dishes.  Rearrange the dining room in case he’s gotten used to it being a scary place where he doesn’t want to eat.  Bring food outside and try it there.  Change up the way we are doing our snack therapy. Hopefully, something will work and he’ll start to improve at home.  Because if he can’t get better at home, he isn’t really better.

As always, the hard part with such little ones is that they can’t communicate how they feel, what they are thinking, and what they want coherently.  It all is manifested in behavior and the adults are left to guess their way through the maze and hope we get it right. 

I’m having a day where I feel like the aliens at the end of Mars Attacks when their brains explode inside their helmets.

I was about to write “that’s the discouraging part”, and that’s kind of how I feel at the moment, but I know that isn’t reality.  It’s just another thing I have to figure my way through, and hopefully, guessing my way through the maze of Jake’s little body and brain won’t be too difficult.

I think that saying “that is the complicated part”may be a little more accurate.  In case you haven’t figure this out by now, half the reason I write this blog is to help me process and figure out how I’m feeling.  Crazy is more entertaining, but I think I’ll limit the crazy to my hair and occasionally lighting things on fire.  In a totally safe way, of course.

Anyway.

There are lots of really great and wonderful things that happened this week.

Jake’s medication saga started out really bad and then got really good, so I’m putting it in the good category.  I went to refill the antacids for his acid reflux and the pharmacist calmly asked me for $350.  After I resumed breathing, I figured out that the cheap generic version of his drug isn’t made anymore.  One look at my face told the pharmacist that he needed to help me find a different solution and after several tense phone calls with the pharmacy and our doctors, I found a $14 a month solution.  (I will write another post soon about the value and absolute necessity of learning to be a very polite nag until I get what I need.)  The only downside to the new meds is that it does frequently cause small children to sprout horns and foam at the mouth.  The tantrum I saw today at therapy may be because of the meds.  Stay posted for more information on that one.  Or you could just wait for the explosion over Colorado Springs.

Another great thing is that I got two really solid leads on how to get continuing therapy for Jake, since our insurance will run out in five weeks.  I’m having to consciously stuff back the rant I so desperately want to write about insurance companies right now.  Not the point.  One option is a philanthropic organization who help families like us out, paying the difference between what we can afford and what we are charged for therapy.  I sent in my application with a note that I would be happy to give volunteer hours since we can’t afford very much money for his therapy.  The other option is Early Intervention Program through the school district.  Children  up to age three can receive free therapy, at home, for various problems.  After talking with Becky, our ideal situation is that we get the nice philanthropic people to help us with feeding/speech therapy with Becky and have Early Intervention do physical therapy with usa t home.  We should get it all worked out in the next month, but the bottom line is we will get services we can afford, or for free.  And, yes, I did a fair amount of crying after I got all this news.  What a huge, stinking relief!!!

The last great thing may not sound like that great of a thing.  Jake has fallen four times in the last five days, skinning his knees, bruising his shins, getting a bloody nose, and for the grand climax tonight, getting a half-inch vertical cut on his gums.  There has been a fair amount of bleeding, bandaging and hugging this week.  The reason I’m happy about all of this is it means that Jake is adventuring.  He’s running, jumping, falling, crashing, and doing all the things little kids are supposed to do.  It means that he’s getting better.  And, it means that he is starting to find his way out of the maze.  I couldn’t be happier!

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7 Responses to Jake’s Fingers: Guesswork in the Maze

  1. behnnie says:

    How many moms find joy in bumps and scrapes? I like, I like.

    When will you find out if your application has been approved by the philanthropic org you mentioned?

  2. Brenda says:

    A few thoughts …

    Crazy with the hair is good. Lighting things on fire, I’m cool with. Please don’t combine them.

    I am soooooo glad your Early Intervention program is an option! That saved our bacon with Peter. I got into it sort of by accident when I took him (at age 14 months or so) to get his hearing tested, and when they found out that he had perfect hearing and threw up a lot and wasn’t talking, the next set of tests was from the early intervention folks. After that we were in the program one way or another until he went to kindergarten – speech therapy, physical therapy, help with the eating issues, autism services, two different special-needs preschools – all of it free. I am so glad you have something similar there!

    And one last thing … I guess if he gets anywhere near critical mass, you can just drive him over to Stargate Command and explain the problem. Maybe they can rush him through the gate to some empty planet, let him throw his fit, and bring him back when he’s done.

    • After reading your comment, I’ve been tempted to go toss him through our Stargate (you’ve seen a picture of that, right?) just to see what would happen. I’m knew how much help Peter was getting at the time, but didn’t realize that it came from the E.I. people. Which is one letter off from E.T. Hmmmm….

  3. Glad to see so much good news! Praying for more success as you continue to help Jake find his way out of the maze.

  4. Kiert says:

    YAAAAAY for the therapy stuff getting sorted out!! So glad you found an Early Intervention option. That has been wonderful, amazing, incredible for us. It may help you solve some of your questions from the first bit (about why Jake is not making more progress at home.) One of the main things I have loved about in-home therapy is that they can teach you how to do what you need to do with what you have. Fancy equipment in an office is great, but since I don’t have all that stuff at home how can I implement what we are learning? Hopefully lots of couch cushions on the floor, homemade obstacle courses, and furniture climbing episodes are in your future! 🙂

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