Gotta Be Flexible... Guest Blogging Day

Rejoice always, pray continually, 

give thanks in all circumstances; 

for this is God’s will for 

you in Christ Jesus. 

1 Thessalonians 5:16-18 NIV

If there's one thing I've learned about being the parent of a child with special needs, it's that I have to be flexible.  Sure, all parents require a  level of flexibility, but I think, especially when your child has an anxiety disorder, you need to be ready to make your current situation "work" to minimize the impact of stressful situations on your child. 

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Self-Diagnosed Panicky Woman with SPD ~ Guest Blogging Day

Waiting for Skillet to perform at Lifest 2015

So don’t lose a minute in building on what you’ve been given, complementing your basic faith with good character, spiritual understanding, alert discipline, passionate patience, reverent wonder, warm friendliness, and generous love, each dimension fitting into and developing the others. With these qualities active and growing in your lives, no grass will grow under your feet, no day will pass without its reward as you mature in your experience of our Master Jesus. Without these qualities you can’t see what’s right before you, oblivious that your old sinful life has been wiped off the books.

 So, friends, confirm God’s invitation to you, his choice of you. Don’t put it off; do it now. Do this, and you’ll have your life on a firm footing, the streets paved and the way wide open into the eternal kingdom of our Master and Savior, Jesus Christ.

2 Peter 1: 5-11 MSG 

A few weeks back we were at Lifest in Oshkosh, WI.  Lifest is an annual four-day Christian music festival; it's what makes summer "summer," as far as our family is concerned.  We started going 5 years ago, and, despite moving to Nevada last year, we STILL return to Lifest in WI.

Ironically, I tend to have to fight off panic attacks whenever I attend loud concerts.

Weird, right? Why do I keep going if it causes me distress?

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Why the New "Full House" may NOT Work for Us~WAGR Wednesday

I'm listening to Evie upstairs... 

It's been a bad 1/2 hour.  Just 45 minutes ago, I was watching her sit in the recliner with her legs tossed carelessly over the arm in a "regular kid" kind of way.  She had her iPad in hand and was watching "Sam and Cat."

"Do you want to watch that on the Apple TV?"  I asked.  

"No, I just want to watch my iPad."  

Ok...no big deal.

        Until...

"Mommy, can we watch "Sam and Cat" on the Apple TV by mirroring?"  

Now, for any Apple households out there, that didn't sound like a foreign language.  But, for those who don't know, the Apple TV allows you to watch things from your iDevices on your TV...you can simply watch the videos and TV shows on there through your iTunes accounts.  That's what we normally do. 

However, what Evie was requesting was a feature called "mirroring" where you can transpose your iDevice screen onto your TV via the Apple TV.  So, either way, you could watch something on your TV that you would normally watch on your iPad.

Except tonight it wouldn't work. 

The iPad was giving us some message about the show being protected and couldn't be "shared" onto the Apple TV.  No problem, right?  Nope.  BIG PROBLEM.  She didn't want to just watch her show on Apple TV...she wanted it MIRRORED!!!

Seriously, watching it ON the Apple TV rather than mirroring?~It would have looked the same, sounded the same, lasted the same amount of time.  It would have been EXACTLY the same. 

But not to Evie.

      Because of anxiety.

            Because of WAGR.  

Because something happened today, or happened over the past two or three days which built up, and built up, and built up into one great big colossal meltdown. 

We went from Snow White dancing 

while the bluebirds perched on her shoulder 

to the girl in Poltergeist spewing vomit 

while her head spun around 

in a split second.

So, this takes me to why the new "Full House" on Netflix just might not work for us.  It may...don't get me wrong.  We'll give it a shot...but, I'm preparing myself for the disappointment.

First, if the entire cast is not there, we will be asked over and over again WHERE the missing characters are.  "Why isn't Joey there?"  "What happened to Rebecca Donaldson?"  "Why is there no Comet?"  As we try to answer the questions we will be missing the entire new episode which will lead to even greater confusion. 

Secondly, the actors, if the same actors return, will have aged and may be unrecognizable.  Did any of you parents out there live through the changing of the Marinas on "Fresh Beat Band?"  You know what I'm talking about!  Let's face it, we KNOW that Jesse and Rebecca's twins won't look the same, and we know that DJ will not likely have married Steve...

Thirdly, they won't all live together.  Even now, Evie watches, with great angst, the episode where Jesse and Rebecca consider moving out on their own.  "Where will they go?"  "Are they going to move, Mommy?"  "Where will Jesse live?"

Ev, you have seen this episode a number of times, 

you KNOW they don't move out.

So, as much as I'd like to believe that the new Netflix continuation of "Full House" will be a thrilling event in our home, I have my reservations.  Evie's brain gets into nervous knots, and the best way to untangle them is with things that are familiar and repetitive and predictable.  Life rarely appeases that need.  But, we try to safely introduce new and exciting things which can eventually become familiar and predictable as well. 

Well, it's now an hour later.  Things are a bit quieter upstairs.  I still hear her crying.  I still hear her trying to talk herself into a comfortable place in her brain.  In the midst of the meltdown I gave her medicine and Daddy has brushed her teeth, given her eye drops.  She's been back downstairs to apologize for hitting me and having a tantrum, because she "really misses Peppa [Pig] and really can't go to bed without watching an episode."  

She's slept in a hotel, traveled hundreds of miles to San Francisco to be examined and have bright lights shined in her eyes, been talked about regarding her vision, been to the cardiologist and had her weight, her heart surgery discussed, been up early and in bed late, and been to school where they are prepping for major testing next week.  I KNOW this kid is under stress.  I wish I could take it all away from her and tell her that she'll never have to worry about another doctor taking pictures of her heart, or her belly, or her eyes...but I can't.  

I can't help but to be there and to let her watch a "Peppa Pig" episode despite her behavior, because it's the best thing for her soul right now~that...a maybe mommy or daddy saying in that "Full House" sort of way:  

I'm there for you, Babe.

Which came first~the OT or the PT? ~ WAGR Wednesday

Once She Started Walking, She Never Looked Back....

Before I had Evie, I thought OT (occupational therapy) was someone helping another person learn how to do "daily living" things like zipping a zipper, or buttoning a coat.  I thought PT (physical therapy) was someone holding on to two parallel bars and gingerly walking from one end to another.  I never thought that OT and PT would become such an integral part of our family life, but then I didn't know that I would have a child with WAGR Syndrome.

The "R" in WAGR means there is a RANGE of Developmental Delays.  One child may walk and talk along the same developmental scale as a "typically" developing child.  In our case, Evie didn't walk and talk until long after most children start to.  It wasn't from a lack of trying!  We had in-home PT from the time Evie was just a few months old.  Our PT would bring in all kinds of slanted seats and bean bag props to help her develop better posture to compensate for her low-muscle tone; water noodles for holding up and getting Evie to grab on to, and bubbles to blow and get Evie to crawl after or reach out for. I didn't realize that PT was there to help us realize even a small milestone like increasing the degree to which Evie could dorsiflex her foot.  

OT would come into our home and help Evie develop skills like picking up small objects between her fingers, or putting objects into holes, stacking things on top of each other.  These are called fine motor skills, and they were quite challenging for her...even at age 10, she has a hard time locking doors, zipping zippers, putting on shoes, or placing books in a bookshelf.  Is it her vision?  Is it her tactile discrimination?  Is it a nagging inability to use isolated finger movements?  It's quite difficult to know.

What I didn't realize, after Evie started school and was getting services at school and no longer in home, was that OT and PT would once again become very important to us down the road in an "out-patient" setting at the hospitals and clinics in Madison.  We got Evie into OT when she started to have behavioral issues ("meltdowns" if you will).  There were many times that I would actually become afraid because she could grab me and bite me, and had an INCREDIBLY strong grip.  Once I read The Out of Sync Child, I knew that we were dealing with textbook Sensory Processing Disorder.  Evie loved to spin, jump, twirl, ride on carnival rides, fly in planes, bounce...these were all things that seemed to calm her.  The biting was her way of telling me that she felt out of control and unsafe in her surroundings.

The OT recommended an immediate "sensory diet" which consisted of modulated music therapy and the Wilbarger Brushing Technique.  Once we started these techniques, Evie had a developmental explosion...we saw increasingly understandable speech, less frequent and less intense meltdowns, she potty trained (this was much later than other children normally potty train), and she began to walk with more confidence and precision.  It was almost as if she was "in touch" with her body for the first time.

We also had to embark on a new PT journey just a couple of years ago.  Through our participation in the 11p Deletion study at the NIH, we learned that Evie would benefit from orthotics in her shoes.  Once we had an evaluation with a local PT, however, we learned that with therapy, she thought Evie would be able to get by with Super Feet orthotics rather than AFOs or another clinically made orthotic.  Sure enough, after several sessions over several months, Evie's dorsiflex had increased in range (which corrected her toe drop), and she was walking and running better than she ever had before, not to mention a tremendous growth in her endurance for physical activity.

So, which comes first?  OT or PT?  The answer is that it will be different for all of our kids with WAGR, and will be ever changing depending on what will make our kid stronger, more confident, and more capable at any given time.  But it's important to recognize that the two can be closely related and interlocked.  Evie's PT was more successful when she was also immersed with OT and vice versa...they compliment each other quite well in that regard. 

To read more on Sensory Processing Disorder on my blog, you can go to Et Cetera...

To read more on WAGR Syndrome on my blog, go to WAGR or WAGR/11p Deletion...

Hallelujah! I'm Cured!~Guest Blogging Day

Photo courtesy of vongvanvi/freedigitialphotos.net

As for you, brothers, do not grow weary in doing good.1 Thessalonians 3:13 ESV

As a parent of a child with special medical needs, I have seen medicine work and I have seen medicine NOT work.  As a human being, I have felt medicine work in me, and I have felt medicine NOT work.  But, have you ever been in the situation where you stop taking the medicine, or you stop giving the medicine, because you think the illness is gone?  I know that I have.

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