Navigating Through Sensory Processing Disorder

Tuesday Maddie was diagnosed with Hypo-sensitive Sensory Processing Disorder (SPD)

or 

Vestibular Auditory Dysfunction.

It's always overwhelming to receive a definitive diagnosis even when you suspect there's a problem.  

Now I'm in research mode to find out and understand exactly what Maddie's daily life is really like, and how we can help her.

We are starting therapy next week with an Occupational Therapist.

We will be using Integrated Listening Systems (or music therapy) as our main source of treatment.  

I had NO IDEA  the signs/symptoms of this disorder, but now that we have the information we do, it's like the puzzle pieces are all fitting together. 

Our first puzzle piece came when she was just an infant.  

If I was holding her, and I would laugh really loud, Maddie would instantly cry (and this was a baby that hardly ever cried)

 She still hates loud noises. 

Then I started noticing some "quirks"

She repeated tasks over and over and over.  

She would stack these cups for as long as 30 minutes at a time...all the time.  

And then I would notice things and would think, "hmmm, not sure that's normal."

On this particular day she had four things: the fireman's hat, the necklace, the purse, and a bracelet.

Instead of pretending to be a fireman like most kids, she would just put on the necklace, put on the hat, put on the purse, and put on the bracelet. 

Then, she would take off the bracelet, take off the purse, take off the hat, and take off the necklace.

She repeated that over and over for probably 15 times in a row.  

Then I began noticing how she loves to line things up.

Another strange symptom is she has to smell everything. 

She also loves to lick strange things.

But the main symptom that had us investigating the problem is her spinning.  

She always spins and spins and spins and spins and never ever gets dizzy.  

I say she's "literally unwinding" but it was her speech therapist that noticed it one day after a session.  

She knew it was a red flag and suggested we check into it.

I'm so glad we did!!

Although it seems like these little quirks are just part of her personality, 

the vestibular system in our brains is the only system fully developed at the time of birth.

It's the foundation for all other developing systems and it literally affects everything. 

Handwriting, gross motor bilateral movements, fine motor, speech, etc.

Our issues with potty training can be associated with this as well. 

The good news is, it can all be helped with therapy and once Maddie is regulated, we'll be able to work on these areas she's falling behind.

She's so amazing, and I'm in awe of her even more now that I realize she's been coping with this and self-regulating for 5 years now.

I'm excited that we now have a plan to hopefully make life a little easier for her, and I'm trying not to dwell on the fact it's taken this long to get started!

It turns out that Sensory Processing Disorder is really fairly common (estimated 1 in 20 children)

I found this really great checklist that is very thorough

*I think it's important if you see some of these items on the list (Maddie has several indicators) and wonder about a child in your life and know that these things are interrupting quality of life, it's worth checking into.*

On the other hand, sometimes it's these funny, quirky things that make kids... kids and we celebrate their individuality and uniqueness. 

It's always a balance, but if you are like me and you see things that make you tilt your head and wonder, it's worth investigating!!

As we navigate these new waters, hopefully there will be more knowledge and understanding to share and pass on. 

 

Surrender

Life keeps happening.

Its' been a very trying year so far.  

Our first miscarriage in December.

Losing our beloved Gracie in February.

The tornado in May.

Furloughs in September.

And now our second miscarriage.  

The ironic this is, for the first time in my life I have baby fever.  

And if we were pawns in the game of life it would seem cruel that it's been taken from us.  

But the thing is, my trust in God checkmates my own desires in this life.  

He's proven himself trustworthy over and over again, and I believe that He is good.

Or, as Paul put it, 

"I am crucified with Christ, it is no longer I who live, but Christ who lives in me.  And the life I now live in the flesh I live by faith in the Son of God who loved me and gave himself for me."

 Galatians 2:20

I finally get that verse.

   It's about surrender.  

Surrendering our rights.  

Surrendering our desires, our wishes, our dreams, our plans.

Although it seems to the world as bondage, it was this verse that gave me freedom the weekend we found out we lost the baby.  

Freedom from the bondage of being responsible for the loss and freedom from the unhealthy kind of grief that can weigh us down and keep us stuck.  

Through His Spirit in me, I've learned to let it go...and trust.

It's also been yet another reminder of what an absolute miracle Maddie is!!  

She brings us so much joy, how could I ever waste time with discontentment!

 

 

 

My Tambourine Moment

"I will sing to the Lord, for he has triumphed gloriously; He...."

I attended the Beth Moore's Living Proof conference this weekend.  

At the end of our time there we were asked to complete the sentence above.  

Beth Moore is so gifted in the Word.  

We studied Exodus 15.

The Israelites have just crossed the Red Sea and have been delivered from the Egyptians.  

Chapter 15 is the song of Moses, rejoicing in what had just happened.  

We focused specifically on Miriam, Moses' sister who grabbed her tambourine and led the ladies in rejoicing.

In completing the first statement, we were defining our own tambourine moment.  

It's that moment in life that you cannot HELP but praise God, knowing the favor He has given.  

That moment when nothing else can explain what just happened.  

That moment when it's perfectly clear God has you in His hands, and He would do anything to 

fight. for. you.

Without getting too wordy, I'll just say really quickly the point that really hit home with me was "nobody appreciates deliverance like those who've nearly been destroyed." 

In order to understand my tambourine moment, I'll give a bit of background first. 

In high school and into my first years of college, I had extreme body image issues.  

I wanted SO BAD to be that coveted size 2.  

I was an athletic girl and was never big, but in my mind, I was HUGE.  

I envied so many of my friends with cute little figures and considered about what it might take to reach my dream.

The good thing was, I was too chicken to actually do the anorexic thing, but I counted calories and obsessed over diet and would say I may have been one devastation away from finding the courage. 

At 16, I was diagnosed with endometriosis and had my first surgery.

Recovering extremely quickly, it felt like no big deal.

At 20, all of the endometriosis had returned and we needed to repeat the same surgery. 

This time things didn't go so well. 

My surgery was on a Tuesday morning. 

By Friday, I was throwing up buckets of blood with a temperature of 104.

I have to insert a side note here for my Mom's sake-she called the doctors and did everything she could to convince them this was serious.

She was told I must have had an allergic reaction and should take some benadryl.

By early Sunday morning, I was in so much pain, I was on the bathroom floor and  thought to God, "this really hurts, is this what it feels like to die."

And maybe it was the 104 delirious-fever but I swear it was like an audible voice that just simply said, "yes."

Kyle and I were engaged to be married.

It was March and we were in the midst of planning our June wedding.  

I wasn't ready to die. 

I cried out for mercy, and felt myself slipping away.

I thought, I need to get upstairs and wake Mom up.

Before I could finish my thought, Mom was there.

She said, "we are taking you to the ER."

It was 2:00 in the morning. 

We've talked about it later, and we both know it was the exact same moment I cried out for mercy.  

God orchestrated it all.

At the ER, we discovered I was so dehydrated they estimated another 30 minutes, and I would have gone into cardiac arrest.  

I had depleted all of my potassium levels.  

It took 5 hours to re-hydrate me.

We would later find out I had staph infection...an abscess the size of a grapefruit.

Before the first surgery, I went in weighing 112.  

Two weeks later, I left the hospital weighing 94 pounds.  

It took 8 weeks to recover and when I went to buy some clothes, size 0 was too big.  

I looked in the mirror and suddenly realized how RIDICULOUS my dream to be a size 2 really was.  

It was all so foolish, and God saved me not only from physical death, but from the emotional bondage of body image.  

I haven't cared a lick what size I am since then, as long as I am healthy.  

"I will sing to the Lord, for He has triumphed gloriously; He saved me and called me beautiful in His sight."

My tambourine moment!! 

 

Just a Bit of Catching Up...

Finding time to blog these past few days has been completely non-existent!

I've got a lot of catching up to do :)  

Let's go waaaayyy back to Labor Day weekend.  

We had so much fun.

First, on Saturday we took Maddie to Andy Alligator's water park.

She's such a water baby.  

LOVE, LOVE, LOVES the water.  

She also really loves stacking...

The Sunday of Labor Day weekend we had a BLAST at the Wiggle Out Loud event.

Music, Music, Music!!!!  

All for kids...how cool is that?!

 Dancing, dancing, dancing!!

and we take a bow!

There was also other fun active activities like parachute play...

Phew, time to stop for a water break...

And then we end with another "water break"

 Good times!

And, a reporter from Fox News interviewed me while we were there.  

The interview aired on the 9 o'clock news!!

music, music, music+dancing, dancing, dancing= fun, fun, fun!!

Maddie's Princess Birthday Party!

Last weekend, we celebrated Maddie's 5th birthday.  

Usually, I plan these parties months in advance, careful not to overlook any detail.  

This year was different.  

Different was good.

I was literally inviting people the day before the party this year.

I know, classy, huh? 

But it was nice, and relaxed, and our special friends came and shared a great celebration with us!  

Our little celebration actually began the day before with Maddie's cousins Caleb and Grady.  

She was super excited to see her cousins and open up her gifts!  

And afterward we all went out to eat Greek food.  

The boys are studying Greece as part of their homeschool curriculum.

I love that part of homeschooling...a road trip becomes an educational activity!!

Decorations were super simple.

with the exception of this wreath I made for last year's party, I just bought everything the day before at Wal-Mart!  Super easy!!

When our honored guests arrived, we took pictures (of course)

Some friends (including Maddie) didn't want their pics taken :)  

haha...i love this, "if I just close my eyes maybe the camera will go away"

There were cupcakes instead of cake because our awesome cake making friend will be having her little one any day now!

There was play time with her good buddy Nate.

And there was story time...

I wrote a little book for Maddie about what it means to be a princess.  

I wanted her to know that if she wanted to be a princess she would have to be a hard worker, be respectful, wait patiently for things, look for the good in others, etc.  

You can view the PDF version here

Of course what's a party without presents?!

And that was pretty much it for our simple party.  

I enjoyed it so much and I think everyone else did too! :) 

Maddie Turns 5!

Every year for Maddie's birthday party we make a video highlighting her year in photos and videos.

I love the way this one turned out!

I've probably watched it 15 times already :) 

`

 

The song is All About Your Heart by Mindy Gledhill -one of my new favorite songs and artists!

Maddie's actual birthday is tomorrow.  

I've got party pics to post then!