Why, yes…….. I do bite.

I’ve  been happy with the services Parker has received from our District’s Home and Hospital program.  I feel as though I’ve had an good working relationship with the teachers, physical therapists, and speech therapists that have come into our home.  I even consider a few of these talented souls to be friends.

The thorn in my side in this set up has been the Occupational Therapists.  The first one I simply refused to allow to come back.  The second one was really great at first, but when Parker was once diagnosed with MRSA in his trach **she FREAKED the hell out and decided that this isn’t where she wanted to be anymore.  I could have gone after her via the school district, but seriously, I have better things to do that to force someone who doesn’t want to be here to have to be here.

Enter Occupational Therapist #3.

I’ve always been impressed with this OTs actual skills.  She knows her stuff.   Her ability to  engage and set limits with Parker has been, eh.

Her follow through however has gotten to a point where I am beyond frustrated and ready for battle.  I’m not sure how fair it is to pick a battle with someone who I’m sure finds me a tad bit intimidating.   She’s not totally defenseless however.  She packs some stellar passive aggressive skills.

Pre-writing skills activities

These are Parker’s OT goals on his IEP:

GOALS
1. Given a sensory bin with 6 objects, Parker will grasp objects with preferred hand and release into container across midline with minimal assistance, 3 consecutive monthly trials.
2. Given scissors and an image of a line 6-8” long, Parker will independently position scissors correctly in hand and cut along line remaining within ¼” of the line, using non-dominant hand to guide paper for 3 consecutive monthly trials.
3. Given a pencil, Parker will grasp pencil with mature grasp for 1 minute without hand over hand assistance for 3 consecutive monthly trials.
4. Given a writing instrument and visual reference, Parker will trace and imitate letters of his first name with minimal assistance over 3 consecutive monthly trials.
5. Given a small target, Parker will visually fixate on target for 10 seconds while sitting, 3 consecutive monthly trials.
6. Given practice clothing, Parker will independently don shirt, 3 consecutive monthly trials.

Nothing to write home to Grandma about.  But, hey, this is the same woman who keeps telling me that Parker still doesn’t have a pincher grasp.  *eyeroll*

Activity to improve small motor skills

I can remember Parker working on putting his shirt on 3 different sessions.  He still can’t put it on and she has yet to keep working with him on this.  I have taught him how to take his shirt off.

I get a little stabby when it is obvious that a therapist is walking into my home with no lesson plan what. so. ever.  Like when a Para comes and spends 30 minutes playing a game on the iPad.  Cause THAT addresses all sorts of his IEP goals, no?

Last week was the first time in MONTHS that anyone has worked with him on his cutting skills.

A day or so after an OT visit I’ll get an email telling me what was done during the session and what I can do at home to reinforce those activities.

The last email I received read like this therapist considered my son to have all the intellect of a pile of dirt.

Why is it that I am the one who has to point out that like most kids with special needs, Parker requires CONSISTENCY.  That means if you don’t show up for almost 3 months he’s going to start all over again making you earn his willingness to co-operate and work with you.  If I miss a day or two of working with Parker I have to start all over again laying down the rules and what I expect of this kid.

Parker

Parker can read a person with great skill.  He knows who he can get over on and who he can’t.  If you aren’t consistent in when you show up, if you aren’t consistent in your lessons, and in your expectations,  then any grief you get is kinda on your shoulders.  You are the one with the degree, remember?

Because Parker can be hard to work with (but once he knows you will follow through, that disappears) I think this therapist sees him as too dumb to waste her time on and he’s fallen off her list of who she actually gives a damn about.

I’m trying to spend more time with Parker.  I’ve chosen this homeschooling thing to make up for the time not spent in a classroom due to Parker’s fragile health.

I’m still trying to figure out how to get it all done.  How to get the house clean, dinner done and cleaned up, laundry done, at least 2 hours in on Parker’s lessons each day, spend time with my other kids.  I need to be putting the evening hours to better use with Parker.

You have no idea how much I wish I could pay for a decent OT to work with Parker.  That’s not in the wallet, so I’ve got to take this on and make it work, if nothing else than to refuse to allow this OT to win.  Cause I’m all grown up like that.

I wish I was someone who could let stuff go without it driving me up a wall.  It simply isn’t a part of my DNA.  I need to work on this, because I have ONE shot at educating this Brave Hero and helping him make his way in society.

There will always be time to iron and clean and mop the floors.  I know that in my heart.  Now to just figure out how to actually implement that into my daily life. 

I guess it is time to start looking at a planner.

What do you use to keep you on task and get it all done?

**People we almost ALL have the community strain of MRSA in our noses and Parker’s nose is his trach.  They just happened to swab Parker.  Then they treated him with all kinds of antibiotics to kill it.  Kids in a classroom have the community strain of MRSA in their noses and think how often they pick their noses in the classroom.  Or on the playground.  Or in your car.  Or at your house. You’ll find it in gyms, public bathrooms, in YOUR kid’s nose, at church…..everywhere.

 

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. Um, Parker almost sounds like he’s ahead of the game. He sounds more like some teens I know than an 8 yr old. You know, the ones that will go to hell and back for someone they know cares and is there, but will put you through that same hell if they feel they can’t count on you. Hang in there, mama. And yeah, bite.

  2. I have to make lists for myself. I use small index cards and each day make my list of things I need to accomplish. It’s a clue if I fill the card and still want to write more that I am not being realistic with my list. So, one index card a day. I cross off what I accomplish, and then the next day copy over anything not accomplished (if I deem it still important enough to make the list) onto a new card. The old card gets thrown away. It’s the only way I have been able to keep my sights realistic and accomplish things at the same time. I am easily overwhelmed if the list is too long :)

  3. I am having to have yet another meeting with my special needs son’s school to remind them that they need to get tough on him, hold him to strict standards and not go easy on him because he has issues. If he did not have the skills to complete a task that would be different but he has shown us that he can do these things when he wants to but is completely slacking off because the aides and other people working around him are not holding his feet to the fire. It is getting annoying. I feel you pain about having people around you that do not follow through and have low expectations for Parker.

  4. Ellie Freidel says:

    I have worked with many families that have kids on the spectrum, and have heard/seen the same thing, when it comes to schools and OT ect… headache… my advice is have an activity out and semi started when they arrive so at least they can help finish it. Plus having some other goal like activities close by might spark something when it’s easy to grab?

    http://therapystreetforkids.com/index.html

    I’m sure you have done a lot of research so this website might be old news but it really helps explain why they do certain activities, what the main idea is.
    ie. playing with wind up toys will have the same effect as using scissors = Thumb opposition
    Gives you more ideas plus the fact that a lot of actives you already do are great OT work, or can be if you tweak them a little.

    Sending love from Wisconsin.