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Apraxia, Autism and “Neurological Gumbo”

on Jan 5, 2018

As any good “biomedical parent” does, I have been doing a lot of research over these past few months since our 3 year old daughter Rory was diagnosed with apraxia.  I’ve learned a lot about apraxia, sensory processing disorder, autism, vaccines, chelation, gut health, inflammation, food intolerances and how our bodies and especially our brains work. I’ve learned about nutrition and vitamins and supplements and how these things can heal so many illnesses just by adding or removing something to or from our diets.  It’s seriously like magic and I wish I could shout the things I’ve learned from the mountaintops…but even just shouting them on Facebook is probably driving a lot of my friends crazy. I’ve become that cuckoo lady who is always talking about things like the Nemechek Protocol…SIBO and olive oil and omega 3-6 balance, birds and...

Dear Carter at 8, Collin at 6, Rory at 3 and Owen at 1

on Nov 24, 2017

Hello my sweet children.  It has been YEARS since I wrote one of these state-of-the-union family posts, and I figured it was about time to do another one. Carter Glenn, how in the world are you already 8 years old??  You have grown so much, physically and mentally, since my last update.  You’ve always been tall for your age, but now you stand a head taller than everyone on your baseball team, and you’re going to pass me by sooner than I would like.  Your hair grows like crazy and you always manage to have that cool surfer boy look since you refuse to cut it short.  And your brain, oh my goodness, you blow me away every day!  We arranged for you to go from 2nd grade to the 4th grade advanced math class every day and you are loving that and handling it quite well despite our nerves.  (You could probably go to the 6th grade class, but I don’t think ANY of us are ready...

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...

Ode to Irma

on Oct 4, 2017

By Jenni, Carter and Collin McKay   In early September, twenty seventeen, Something in the Atlantic loomed huge and mean. Hurricane Irma, a category five, A catastrophic threat to property and lives. Over the coming days we predicted and guessed. Denis Phillips (with suspenders) was truly the best. Spaghettis and Euros and NHC tracks, Pretty soon we were all stressed to the max. Irma, Irma the hurricane, Did her best to drive us insane.   Panic! Off to Publix we fled, To buy non-perishables and loaves of bread. To Mobil! To Shell! To Cosco! To Walmart! For gas in our tanks and water in our carts. Evacuation, do we go or stay?! The track says east coast so we’ll be ok. But then a shift west on that fateful Euro. Our stomachs flipped and our eyebrows furrowed. Then another shift west up Florida’s spine. Not the best case, but we’ll still be fine. But then that...

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...