A large family, homeschooling, adoption, special needs, whatever strikes my fancy, sort of blog.

A large family, homeschooling, adoption, special needs, whatever strikes my fancy, sort of blog.

Wednesday, August 7, 2013

Untangling Luke

I feel like someone handed me a tangled mess of yarn, ribbons, and string and said, "This is a fabulous work of art, some assembly required.  Oh, and there's no directions, sorry 'bout that."

I took Luke here for a speech evaluation.  Actually, I thought we were going to get more of a general eval, and some help with feeding therapy, but "there's no physician referral for feeding assessment or feeding therapy in the system."  Sigh.  

Paul may not appreciate it, but I'm thinking I've figured out why God made me so stubborn and forceful.  I absolutely could not navigate this labyrinth system of "help" without an iron backbone.  I honestly wonder how parents with mental or financial challenges get their special kids the services they need.  

So Luke had a speech assessment.


This is the therapist trying to get him to look at the pictures she's holding.  Yeah, not so much.  

Luke's scores ranged from the 0-3 month level to the 12 month level.  She said his abilities were "splintered" meaning that he didn't master all of the things on the 0-3 month level, but he could do some things on the 3-9 month level and even a couple of the 12 month milestones.  

The therapist is going to make a recommendation for a feeding assessment in her report, which I should get a copy of in about 2 weeks.  (Hmm, I've heard that before.  We should be getting the report from MIND Institute soon, shouldn't we?)  

The therapist feels that the key to unlocking Luke's speech (of which there is none) is "getting into his mouth."  Babies normally explore their world with their mouth.  Luke doesn't put anything into his mouth except his hands.  So we're going to try a Mesh Feeder and see what he thinks of that.  

She said he'll probably benefit from one of these:   Z-Vibe Oral Stimulator but not to buy one until he's actually IN therapy.  Also, she disagreed with the MIND Institute's assertion that he does NOT have sensory issues.  She feels the tapping things with the back of his fingertips IS a sensory thing.  

I have a feeling this won't be the last time professionals disagree about what's best for him.  In fact, I've been hoping that we get an actual diagnosis for him, but I've come to realize we may end up with PDD-NOS, the "catch all" dx for, "Yup, there's something not right, but hanged if we know what it is."  

Luke's next evaluation (a joint endeavor with Alta Regional and SCOE) is next week.  Can't wait to hear what they have to say.   


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11 comments:

  1. Praying for your journey with Luke as you unravel the amazing gift that he is. May God grant you the peace and strength to deal with all the appointments and diagnoses and that the doctors will have the wisdom to treat him in the appropriate manner that he needs.

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  2. So glad you are there to advocate for him. :)

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  3. I've often sat in the midst of an appointment and thanked God for making me so stubborn. :) I am finding it is essential to record everything anyone presupposes or asserts. Then I cross-reference it and end up drawing connections that way. There are usually common threads as the kids are examined from many angles.

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    1. Good idea! I can already tell my simple folder of referrals, test results, etc. is not going to be enough, but I'm not sure how to set up an "owner's manual" for him yet.

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  4. I pray that there is some sort of answers soon.

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  5. this is what gets me thru many times. http://www.our-kids.org/Archives/Holland.html If you ever want to talk about it let me know

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  6. I hear you! We have to advocate for our special needs kiddos or nobody else will.

    Wanted to mention a few things we've learned with Mason's oral aversion problems. 1, don't cross the midline in his mouth. So if you are sticking your finger in or a chewy/sensory thing like the one you linked work on one side then take it out and put it in to the other side of his mouth.
    2. Nuk has a 'beginning toothbrush' set that is a lot like the item you linked but way cheaper: http://www.amazon.com/Gerber-Healthy-Start-Training-Toothbrush/dp/B002UXQRKM/ref=sr_1_13?ie=UTF8&qid=1375966119&sr=8-13&keywords=baby+toothbrush Might be worth checking.

    Patience. Persistencce. Those are the only other thoughts I have!

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    1. Thanks! I'll add that to the ever growing list of Luke Accessories, lol. Interesting about not crossing the midline inside the mouth. Do you know why that is? I know therapists are big on getting kids to cross the midline with gross motor skills.

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  7. Zhou Zhou has similar oral aversion, delays, etc. It took us months to get him to let us brush his teeth and another year to get the first voluntary bite of food. Every feeding milestone brought huge speech gains. Simple games and songs and hugs, favorite toys, all the fun things that moms use to motivate kids to try something new and scary.... it just took a really long time to teach him those things and build trust. It was very difficult to find docs who understood my " bonding first, eating second" approach. They mostly wanted to treat him like a kid with no history of trsuma and neglect, which of course was not ok with me. God has given you that backbone of steel for a reason. May he build Luke's trust and help you find what Luke loves enough to make him willing to try somethong new. Sorry, my phone won`t let me fix mistakes for some reason.

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    1. Fortunately, Luke lets us brush his teeth, although his gums bleed horribly.

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