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Tropical Storm Apraxia

By on Aug 3, 2017 in Apraxia | 4 comments

Our daughter Rory has apraxia.  Finally we know for sure it’s what we are dealing with, and we literally drove through Tropical Storm Emily for that confirmation.  Sometimes metaphors are ridiculously obvious and kind of cliche, but just so true you have to expand upon them, so can we just talk for a minute about how the tropical storm and apraxia are so similar?

Emily came out of nowhere and took everyone by surprise, just as apraxia caught us off-guard.  Sure it’s hurricane season in Florida, so duh, you should expect it, but the storm really did organize and appear overnight unlike most named storms.  Apraxia, too, has been a possibility since last April, but since none of the therapists who’ve worked with Rory really thought it was apraxia, we didn’t think so either.  When I read The Late Talker, BAM, it hit me just like Emily walloped the coast.

But also like Emily, apraxia brings a lot of rain but it isn’t devastating.  There are so many things that are worse than apraxia and we are grateful that we finally have a relatively mild diagnosis to work with.  It’s going to be hard, but we will fight and work until we get Rory the help she needs to find her voice.

Also like the storm, we were a bit blinded by the possibility of apraxia.  After a trip to the developmental pediatrician and neurologist we were pretty certain that’s what we were dealing with, but no one really wanted to commit to the official diagnosis, so everything was a bit blurry and uncertain.  I “met” Lisa Geng, co-author of The Late Talker, on her CHERAB Facebook support group for apraxia, asking questions about therapy options and getting SO much information from her.  Through this information, I found the articles I referenced in my last blog post and she suggested that we try to get an appointment with the speech therapist extraordinaire that her son Tanner worked with, Dr. Renai Jonas, to get confirmation one way or the other.  Dr. Jonas has 35 years of experience specializing in autism and apraxia, so if anyone could tell us what we are dealing with, Lisa thought she would be the one.  The catch was her location in Boca Raton, a 4.5 hour drive from our home in the Tampa Bay area, but on Lisa’s strong recommendation, I called to make an appointment and they squeezed us in when there was a cancellation on Monday.  My big boys went to stay with my mom for the day while my husband, me, Rory and baby Owen drove down to Boca Raton on Monday morning for our 1:30 appointment.

What we realized upon waking was Tropical Storm Emily lighting up the radar map in red and orange for our whole route down the west coast of Florida.  Dr. Jonas called to see if we wanted to cancel, but we were determined, so off we went.  We made it across the Sunshine Skyway Bridge right before it was closed for a high wind advisory, and there were several points on our drive down Highway 75 that we literally couldn’t see out the front windshield because it was raining so hard. In hindsight we realized that we were a few miles from the coast right as Emily made landfall.  Thankfully the storm did let up a bit for our trip across Alligator Alley, but it didn’t clear altogether until our way home, which again, was so appropriate because our meeting with Dr. Jonas brought clarity to SO much.  She confirmed that we are definitely dealing with apraxia and also that Rory is talking to us much more than we have been understanding (more on that later).  The drive home brought sunshine and puffy blue clouds along with a sense of relief that we finally have a direction to work toward and a good prognosis.  “She will talk!” Dr. Jonas told us as if it were no big deal.  And I believe her.

Enough talk about the storm, let’s talk about our visit with Dr. Jonas.  First off, it wasn’t what I expected.  In lieu of a sit-down and formal assessment, of which we have done several, she immediately got to work on a real therapy session.  She peppered us with questions and I tried to give her bits and pieces of pertinent information as we went, but she was hands-on right away using the PROMPT method to shape and coax sounds out of Rory’s little mouth.  After reading about PROMPT it was awesome to see it in action!  I didn’t think Rory would be receptive since she hates having her face touched, but Dr. Jonas had the magic touch to tick Rory off but then focus her back or give her a high five so she wasn’t hysterical.  And she was able to get things out of her that we’d never heard Rory say.

Rory has never been able to tell us “yes.”  Not only can she not say it, she can’t sign it or even nod her head, which is SO frustrating!  Dr. Jonas was determined to work with her on learning to nod her head, and she physically put her hands on Rory’s head to show her how to nod, asking her questions and then helping her nod for yes.  We still have a long way to go on this one, but it definitely gave us something to work on.

Her motivating tool for the nodding exercise was a bag of veggie straws, which, go figure, Rory saw and said “veggie straws!”  Not totally clear, but she definitely was trying to say it.  Perhaps she has been holding out on us?!  Veggie straws are a good therapy tool.  Dr. Jonas put one in Rory’s mouth and she had to get it in her mouth without using her hands, which helps strengthen her mouth muscles.  She then did the same thing with pretzels, which is a bit harder since they don’t dissolve.

She also showed us an exercise using stickers, which she started putting all over Rory’s face.  Rory immediately started ripping them off, but she left the ones on either side of her mouth, showing just how the oral apraxia is affecting her: she couldn’t feel them there!

Another exercise she worked on was getting Rory to fill in the blanks, which I have never had ANY luck with.  She had Alexa play No More Monkeys Jumping on the Bed, which Rory loves right now.  She would stop the music and then work on getting Rory to fill in Mama, Doctor and Monkey, and she DID IT!  They were approximations, but she was doing it!

Then she said it was time for Rory’s exercises.  She proceeded to massage, rub, pull, twist, etc. Rory’s cheeks, lips and mouth to work on strengthening the muscles in her face.  Rory  was NOT a fan, but just as I mentioned before, Dr. Jonas was magic and knew just to much to push and how to diffuse her temper.  What this told me was that her previous speech therapists were not the right fit, because they were afraid to challenge Rory (not that I blame them, she can be pretty terrifying!).  So now that we are looking for new therapists, I know what kind of person we need to work with her: someone kind, but strong; who doesn’t take any crap but also makes Rory love them, because Rory definitely love Dr. Jonas.  We asked if she has a twin sister who lives in Tampa, but no luck.

So what were our main takeaways from this epic visit?

Since our visit Rory has said “water,” which I have literally been trying to get her to say for a year and a half, so that was a triumph.  She has been trying harder, and so have we.  I may be imagining it, but it seems like after Rory heard what Dr. Jonas told us, she has made more of an effort to communicate with us, like it validated her and encouraged her.

Also since my last post, we got our first phase of approval for the Gardiner scholarship!  If you live in Florida and have a little one with apraxia (or a significant speech delay, plus autism, Down syndrome, etc.) then definitely look into the Gardiner.  They take the funding from the public school pre-K class we’d planned to put Rory in (but didn’t really feel right about) and give it to us to spend on private school and/or therapy.  So instead of getting group therapy with an overloaded school SLP and potentially distracting other kiddos (and not being able to TELL us what’s going on) we can put Rory in the right kind of therapy and be as involved as possible. We still have a lot of balls up in the air when it comes to how on earth we are going to pay for all of this therapy our girl needs, but Gardiner is a fantastic first step and it will pay for at least a few hours of therapy each week.

Our apraxia journey is so far from over, and honestly until she has a few weeks of therapy under her belt with her new therapists, I will still be holding my breath, but seeing what was possible in just two hours with Dr. Jonas made me feel so hopeful for Rory’s future.  Here’s hoping that by the time hurricane season is over in November that Rory is well on her way to finding her voice.

4 Comments

  1. Winifred Morice

    August 3, 2017

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    Such a moving, eloquent and hopeful story, Jenni. I feel so confident in the outcome. Rory is so lucky having you and Glen on her team. Much love…Will so look forward to accounts of her ongoing progress and successes.

    • Jenni

      August 4, 2017

      Post a Reply

      Visualize success for us, Winifred. You are so good at keeping our hurricanes at bay!

  2. Heather

    August 4, 2017

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    Such a great post! I’m glad you have answers. My little one also has Apraxia. What kind of stretches are you doing with Rory? My son’s therapist recently started Beckman cheek stretches and I was wondering if they are the same.

    • Jenni

      August 4, 2017

      Post a Reply

      Hi Heather! I’m not sure what Dr. Jonas used with her, but I do see that the new therapy center we are hoping to start her in uses the Beckman Oral Motor Protocol, so maybe the same thing? Does it seem to be effective for your son?

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