Jake’s Fingers: Therapy Wars and “Ew”

After last week’s post ( https://sistertwo.wordpress.com/2011/06/03/jakes-fingers-seeing-the-maze-more-clearly/   if you want to catch up), I knew this week was going to be a doozy with petitions to write, specialists to see, and regular doctor visits on top of what we have going on already.  It’s been a very good week, and I’ve had the time I’ve needed to do the thinking and writing necessary for everything.  All my appeals are turned in and now we’re just waiting to hear back.  There is still lots to tell you about this week! 

On Monday, we saw an audiologist to rule out any hearing problems related to Jake’s speech.  The non-Mama part of me was fascinated by the testing process.  Jake and I sat in a tiny observation booth surrounded by speakers.  The audiologist played a series of sounds at different frequencies.  To get Jake to do what he needed to do, she lit up a toy on the top of the speaker making the sound so that Jake would look in the direction of the sound.  She gradually stopped lighting the toy, but he still looked in the direction the sound was coming from.  Then, she had Jake face me, so there was no chance of him getting direction from her and she told him to identify various body parts, each time turning the sound down until the last direction was barely audible.  The good news is that Jake’s hearing is just fine.  Which after hearing him imitate the sound of a chainsaw a half mile away, I wasn’t too surprised.

Then, this morning, an Early Intervention parent liaison came to see Jake and I at home.  In an almost unprecedented moment, both Jake and I were up, fed, clean, dressed, coffeed and happy by the time she came at nine o’clock.  The purpose of the visit was to see if he indeed qualifies for the program, which is a year long and would involve the appropriate therapists coming to our home, free of charge, to help Jake get up to speed by the time he is ready for school. 

Jake did exactly what he needed to do, and he interacted well with the therapist.  The good news is that we are approved for the next step which is another group evaluation, which will identify the areas in which he is more than twenty-five percent below the national average.  She told me that he probably won’t qualify for physical therapy, but will almost certainly qualify for speech and feeding therapy.  We should go to the group evaluation within the next month.

So, Jake did great.  I didn’t so well with the whole thing. This next paragraph is kind of what I wish I could have said to the lady we met with this morning. 

Even though I’ve been around kids, have my own little one, and have had more contact with the medical profession than most people my age, I still don’t understand the technical jargon.   I’m not stupid, I just don’t speak your language.  When I’ve told you that I don’t understand, please don’t act condescending and/or continue to use your own language so you feel so much smarter than me.   Not cool!  Also, even though you believe strongly in what you do, it is not the only method out there and you may not be derogatory towards the work I and my therapist have already done.  We’ve both worked our asses off trying to get Jake to eat and talk and just because we haven’t done it your way, it’s okay.  I absolutely refuse to engage in a therapy war.   I’m also sure that you are a lovely person and in any other setting I’d be really curious about your life, but when we only have an hour to get to the bottom of Jake’s problems, I’d probably rather you kept your social life and the stories about your nieces and nephews to yourself.  We aren’t here right now to be buddies.  And finally, please choose your words carefully.  When you see Jake sign “more” and you say that I’ve taught him “bad sign language”, it makes it very difficult for me to calm down and try to figure out what you mean.  (She really meant that saying “more” is inadequate since it’s not specific as to what he wants and I still have to guess.  But, seriously?  Bad?  Don’t think so.)  So, to all medical professionals, be kind, be thoughtful, use your words carefully, and understand that there is a thinking, feeling parent on the other end of the conversation who would walk through fire if it helped her child.

Okay, that’s enough of that.

Almost.  I wrote all that two hours ago and now I can sum it all up nicely since I’ve had time to process.

If, based on my one interaction with one person, I had to make a decision on whether or not to pursue therapy with the resource exchange, I would decline.  However, since I know that one person is not representative of an entire program, I will be mature and continue in this program.  But, I will bring my brain along and the first sign that things aren’t going the way they need to go, will reserve my right to take him out of the program. 

So there.

The thing I love about where Jake is right now is that he can work with not nice people and I have to deal with things that are difficult and he doesn’t have to know about it.  He won’t remember that this woman wasn’t pleasant, that it made me mad, or that I have reservations about the program.  He can continue his lovely little life and as long as I continue to handle myself well and deal with the hard stuff not in front of him, he can be a happy, stress-free little boy.  That keeps me in check and is a great encourager on days like today.

When we saw Becky today, I gave her a big hug and a thank you for never making me feel dumb, never talking over my head, and for always reminding me that I’m Jake’s mama and I know what’s best for him.  What a difference that can make!

During his therapy today, Jake busted out his developing language skills and asked for “crackers”, said “Bebe”, which is “Becky”, and even tried saying “help”.  I’m so pleased with the way that his speech is coming along.  This morning when I was picking up dog poop in the yard and saying “ew” a lot, he came running over to see what I was doing and kept laughing and saying “eeeeeeeeeeeeew”.  It was so cute and so new!  I love the beginning of being able to hear what’s going on in his funny little brain.

This has been a much longer post than usual, but I’m sure you won’t be surprised to hear that this is really the short version of everything. Thanks for hanging in there through the whole thing.  I appreciate being able to process and be honest about our journey.  And, as a present for reading the whole thing, here’s one of my favorite pictures of Jake being silly.  🙂  Gotta love the eyebrows.

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7 Responses to Jake’s Fingers: Therapy Wars and “Ew”

  1. behnnie says:

    I “Liked” this post for the eyebrows.
    I “Loved” this post for the mama-thoughts.

  2. Dottie says:

    What a silly, cute little boy my grandson is. 🙂

  3. ruth says:

    Need to hug on that kid!…going through jake with drawls 😦

  4. Mom says:

    fabulous eyebrows! fabulous mama!

  5. Michael says:

    Good post, Mary. I could feel your anger at the therapist. I have worked with so many “professionals” who only understand their own way of doing things that I find I can see them coming a mile away now. Smile and nod. Nod and smile. And when they go away, take a deep breath and do what is right.

  6. Jessie says:

    Good post, love. I’m stoked to hear how things are progressing, unaware medical professionals aside. That was a good reminder, actually–I have a jargony job that involves helping people and it’s easy to get caught up in jargon and program requirements and not realize that you’ve lost/offended someone. Uncool. Thanks for the reminder.

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