Luke’s Story – Update

– A while back, Luke’s school for deaf education (Moog) hosted a night out at The Magic House.  It was a way for parents to meet other parents and kids to interact with other hearing impaired kids from the school.  I was excited about going and getting to know some other families in the school.  The kids had a blast, but it was hard to talk to other parents.  The Magic House is huge, so people spread out.  I did meet one of the teachers in the school that I hadn’t seen before, and one other mom.  While talking with the other mom, I got the impression that she didn’t think Luke was hearing impaired enough.  It was like she was making it a competition over who’s child had it worse.  It was really odd.  I’m really hoping that all the parents aren’t like this, but there’s no way of knowing until I meet more families.  And I plan to do just that.

– The final paperwork is being filled out to send Luke to Moog two mornings a week for their toddler class.  Our IFSP had to be updated, registration papers have to be filled out, and a doctor’s physical has to be completed.  Plus, transportation had to be lined out to pick up Luke in the afternoon, feed him lunch, and take him to our daycare so we can pick him up in the evening with Anna.  I was majorly stressing out about that last little bit (and having some massive mommy guilt).  All the wheels are in motion for Luke to start classes next month – and it turns out that my sister-in-law is going to be able to drive Luke for us.  It’s amazing how things seem to fall into place!  Blessed!

– Luke was originally using loaner hearing aids provided by Moog. His personal set was ordered and has arrived!  It was very exciting!!  His new pair of aids are transparent, so you can see all the guts inside.  It’s pretty cool for a tech nerd!  The coolest thing about the new aids is that they are waterproof.  Luke can wear them in the tub, in the rain, in the pool, etc.  Pretty cool, huh?  It kind of plays mind games with you when we leave his aids in for a bath or to play in the hose.

Pretty techy, huh?

Nice rat tail, son.

– Luke’s new aids came with a whole kit of fun stuff.  Did you know there are stickers that are made to be worn on hearing aids to dress them up?  Who knew hearing aids could be so customizable? Also in the kit was the sweetest little book about a boy elephant who has to get hearing aids.  The book goes through all the different steps from diagnosing in a hearing booth, doing ear impressions, getting his hearing aids, adjusting to them, and learning to use them to take in his world.  Really love this little book.

‘Oliver Gets Hearing Aids’ – Two thumbs up from the Parsons’ house!

– Since as long as Luke has been able to show reactions, he’s shown a clear love of music.  He’s always been drawn to music.  I read an article about a man with a high-frequency hearing loss that was discovered when he was in his 30’s.  The article is about how he loves music and used it as an escape.  (Read the article here.)  What’s interesting is that a person with hearing loss doesn’t hear music in the same way that a hearing person does.  The lyrics don’t tend to translate well.  Instead, the sound of the music and the vibrations that the music creates is what is appealing to hard-of-hearing individuals.  Music is a totally different experience for them!

– Luke had to have new earmolds made.  His ears have grown and his original set are now too small.  It was quite the ordeal picking out the colors and pattern for the new molds.  It may not seem like it, but it’s a big deal.  A BIG deal.  I had the entire bag of samples spilled out on the table trying to decide what to do.  Like the dork that I am, I planned out the next few sets of earmolds so I could coordinate colors and patterns with holidays that they would fall on.  OCD? Maybe.  Anyway, I decided that we would go with red/blue stripes to support America’s baseball team (the Cardinals, if you were unaware) and the 4th of July, swirls to get us through Halloween, and red/white striped to ring in Christmas.  I figure that I’ll seize the day while I can, before Luke has a say in his molds.

Ignore the pasta sauce facial Little Man is rocking.

– His new earmolds had to be redone.  They didn’t fit as well as they should and they didn’t have a helix lock (a little piece that sticks behind a flap of skin on his ears to provide extra stability).  Plus, the tubes weren’t glued in and kept pulling out of the molds.  New impressions were done for another set of molds to be made.  We should get those at Luke’s audiology appointment this week.

– As of now, Luke’s hearing is stable and his speech development is going well!!  Luke can say several words, although you have to know what to listen for most of the time.  We know that he is understanding a ton of language.  He can follow simple instructions and point to items when you ask him.  We are working on getting him to use words instead of whining or grunting for things and trying to get him to put two words together.  We are getting more comfortable with Laurie (Luke’s Teacher of the Deaf), Anna is getting involved with Luke’s therapy, and our routine seems to be falling into place. All-in-all, things are moving right along!

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2 thoughts on “Luke’s Story – Update

  1. Hey!

    Regarding the parental deaf competition, that does happen, but I can say for sure that its not everybody that does the “deafer than thou” thing.

    I used to run into that when I went to some more involved deaf social events in Austin. Sometimes deaf people are treated like second rate citizens (rarely, in my experience), but among the deaf, sometimes late-deafened or HOH are treated as “not deaf enough,” and so get moved to the periphery. This is very rare, but I have been a part of it before. It’s easily overcome by refusing to get sidelined in a social setting.

    Even with all of that craziness, I usually found people tremendously supportive. It’s amazing what common ground like hearing loss can do to bring people together. It helps even more than HOH/deaf who know sign language will naturally congregate with each other and other sign users, since they can relax and freely communicate without the mental drain of straining to hear and understand.

    I’m glad you found a good school for him!

    MJ

    • I’m so glad to hear that not everyone treats hearing loss as some sick competition. It was shocking when I met that mom! So far, everyone else that I’ve met has been extremely welcoming and open even if Luke isn’t ‘as deaf’. 🙂

      Again – thank you for your insight! I love hearing the perspective from someone who has been through it! I really appreciate it!!

      -Lisa

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