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Rory’s November Apraxia Update

on Nov 19, 2017

When you take on the role of “special needs parent” it’s rarely something you planned for or expected.  I hear all the time, “I don’t know how you do it!” and honestly some days I don’t “do it” very well.  I yell (sometimes very loudly), I say things I regret, I mess up.  But as most special-needs parents will tell you, you have to fight for your child and be their advocate.  Even on my bad days, I know I do this part very well. So that’s what I’ve been doing since my last post.  I’ve been refusing to accept that therapy is the only thing we can do to help Rory, so while spending a crap-ton of time in the therapy waiting room while Rory gets speech and OT for three two-hour blocks a week {with my crazy one year old} I have been reading books, researching, and talking to other moms who are in a similar {lovely} boat...

Nemechek Protocol and Apraxia

on Sep 23, 2017

The journey we’ve been on with Rory since figuring out a few months ago that she officially has apraxia has been such a learning experience including driving through a tropical storm to get a diagnosis and successfully navigating the Medicaid application process to get her CMS insurance to cover the extensive therapy she needs. Throughout these few months I have read a lot of books that have opened my eyes to apraxia, sensory processing disorder, behavior modification, and the latest, the Nemechek Protocol.  Neme-what, you might be thinking?  This was certainly new to me, too. I really do believe that there are “signs” put out there from the universe that we really need to see, so I tend to fall down rabbit holes quite frequently in the various Facebook groups I’m a part of, exploring various disorders, treatments, and especially success stories to see if they...

Apraxia and Medicaid

on Sep 2, 2017

I just did the math and it’s been about a month and a half since we figured out that our three-year-old daughter Rory really does have apraxia.  It feels like way longer than that because we have learned so much, done so much, and while the progress is still slow, I feel like Rory has made more progress in that time span than in the previous year and a half she was in therapy. As of my last post we had just had our evaluation with Dr. Jonas and we had just gotten our preliminary approval for the Gardiner scholarship.  Our weeks since then have been focused on getting Rory approved for Medicaid through Florida KidCare and their CMS (Children’s Medical Services) Insurance that is specifically for children who need more medical help than typical children.  I’d originally heard about CMS from Rory’s Early Steps therapists, who basically described it as a...

Tropical Storm Apraxia

on Aug 3, 2017

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...

Starting Rory’s Apraxia Journey

on Jul 22, 2017

We have been trying to “unlock” our three-year-old daughter Rory’s speech for the past year and a half. While apraxia has been on the table as a potential diagnosis since the beginning, I never really felt like that was “it” and I hoped that even though it wasn’t likely, that she would be one of those late talkers who just woke up one day and started speaking in full sentences. You know, like Einstein. When she turned three and still had only a handful of words, we took her to the developmental pediatrician, who pulled out her copy of The Late Talker to go through the symptoms of  apraxia with us.  When we got home I checked the book out from the library and joined the Facebook group of co-writer Lisa Geng where I read article after article about her experience with her son’s apraxia.  But it was this article about the soft signs of apraxia...