Tuesday, July 12, 2011

do not become weary

Speech therapy.   Someone jokingly told me before we brought Logan home that I needed to choose a speech therapist I liked because I would spend more time with her than I did with anyone else in my family.  Guess what?  It’s true.  Well…almost.  I spend more time with the speech therapist than I do with my biggest guys or my closest friends, that’s for sure!

In July 2008, we started speech therapy.  Logan fell instantly in love with his therapist, Tina.  She was delightful, and perfect for him.  She had high expectations and didn’t waver, even when he didn’t cooperate.  She understood him and encouraged him.  She took time to ask questions, to learn about him, and to help figure out how his hearing loss was affecting his speech.  In short, she was a gem.  Logan’s beloved Tina left for maternity leave after 18 months with him.  We liked the therapist who filled in just fine but were anxious for Tina to return.  Then the therapy center had a change in policy, and ‘chronic’ kids like Logan had their access to continuous therapy restricted to better accommodate the patients on the waiting list.  We opted to find a new place for therapy.  It was/is too hard for Logan to adjust to a new therapist every 20 sessions.  Logan’s new therapist has training in a hands-on method of speech therapy successful for children with apraxia.  Logan likes her just fine, but she’s not Tina.  :)  She works him hard too, but progress has been painfully slow.  During the school year, Logan also has speech therapy at the local school.  Ellen, his therapist there, is a huge advocate of Logan.  She adores him, and he really likes her.  Because she has less experience with Logan’s combination of issues (hearing loss, cleft lip/palate, and apraxia) she’s chosen to focus on one aspect of Logan’s difficulties:  the grammar and construction.  She still works with him on articulation, but her primary focus is grammar and construction.  It works well, and I am eternally grateful for Ellen’s time and effort.

About 6 weeks ago, I was researching hearing loss and literacy rates on the internet when I came across something intriguing.  Essentially, it’s a program that is like an EEG for the mouth.  A specially made ‘retainer’ that is embedded with electrodes plugs into a computer program.  With the retainer in the mouth, the electrodes project a graphic of the tongue placement in the mouth.  Very fascinating.  Complete Speech makes the palatometers and trains speech therapists to use their equipment.  (Watch some of their amazing videos here)  After a conversation back and forth, we found a therapist who uses their program.  We discovered that we can use their home rental program and only see the therapist once a week.  Good thing, since it’s 45 miles one way!  Man…is this program a work-out.

This new gal is amazing.  She’s not Tina, but Logan seems to like her okay, which is nice.  We knew Logan had low muscle tone and low core strength.  The new speech therapist has helped us to see where Logan is clearly compensating for the things he can’t do.  Problem is that his compensations don’t allow for him to physically form some speech sounds.  His lack of core strength, his low muscle tone, and his coordination issues combined mean that in some areas we are starting with true basics.  Right now, we go to speech on Tuesdays at 11.  Therapy is 60 minutes.  At the end, Logan is exhausted.  He’s so tired he hardly says a single word all the way home.  She works him HARD! The rest of the week, we do the homework.  What kind of homework?  Well, we work on core strength.  His daily routine consists of sit ups, v sits and crossover v sits, bicycle sits, jumping on the trampoline, riding his bike, hanging upside down on the monkey bars and trying to sit up, using a straw (without using teeth to hold it or using the whole jaw to create suction), biting on chewy tubes for jaw strength, playing ‘name that tune’ while humming (to work on breathing through the nose instead of the mouth), and, of course, time with the palatometer and the computer.  Whew! Some summer vacation we’ve got going.

Therein, though, lies the rub.  I’m mom, which generally means chief disciplinarian since I’m the one here most of the time.  I’m the teacher-- 1st grade this fall.  And now therapy supervisor.  Or slave driver, as he would say (if he knew the term!).  Where’s the limit?  When can I just be plain old mom, the one who plays with and has fun with her guy, instead of being the meany and the teacher and the slave driver?  I have a much better understanding of my neighbor’s dilemma a few years ago, when she finally decided she had to remove herself from some of her child’s therapies in order to just be mom.  And the other, sometimes harder, question:  how do we adjust our expectations to better reflect Logan’s abilities?   Are our expectations too high?  How far do we lower them?  In what areas?  How do we decided?  What about this thought:  If post-stroke apraxia causes issues with the person’s ability to connect thought and actions, what about a child with global apraxia?  Do they have the same problem?  If so, what does that do to learning?  To behavior?  To the understanding of cause and effect?  The whole mess is so intertwined that it’s very hard to separate out the threads and know what’s best for him.  So we lump along, doing the best we can.  And we hang on to what we know to be true

“Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.” ~Galatians 6:9

because once in a while it’s the only thing that keeps us going.

1 comment:

  1. You ask so many of the same questions I have been frustrated with in our journey with Alexander. Eric comes home and truly just plays with him. I on the other hand are always thinking of therapy things to do while we are playing. Sometimes I wish I could just play with him but, then who would push him? Love you! Teresa