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Lucky 13 Tips for Surviving Disney World With Special Needs Kiddos

on Feb 11, 2018

Our son Carter is 8, and up until this past Friday, despite the fact that we live in Florida, he had never been to Disney World.  Of course we’ve had good intentions of taking him there, but first it was “we have to wait until baby Collin is old enough to enjoy it too” and then it was “we have to wait until baby Rory can” and then we’d finally picked a date for our first trip when I got pregnant with baby Owen and had the world’s worst morning sickness that made us postpone it again, then another year while he was tiny, and then finally we decided to surprise them with tickets for Christmas and make 2018 our first family trip to meet the Mouse.  After much debate, we got the three-day Florida resident passes, but we decided that starting with just one day at the Magic Kingdom with no hotel stay involved was probably the smartest thing to try,...

The Nutrition Matrix

on Feb 11, 2018

We’ve all watched the movie The Matrix.  Good ole Keanu (whoa!) as Neo realizes that he has been living in this made up world and everything he knows gets completely flipped upside down.  The deciding moment is this scene: You take the blue pill—the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill—you stay in Wonderland, and I show you how deep the rabbit hole goes. Remember: all I’m offering is the truth. Well hello, my name is Neo (Je-Nni-eo?), and I have officially taken the red pill and gone down that rabbit hole. I spent a solid 37 years of my life living the standard American life, eating the standard American diet (for which the acronym is appropriately SAD).  It was easier–and way less scary–than the world we’ve been occupying for the past few months, where I’ve started to feel like some...

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...

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...