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After being told I would never be able to have children, I am now a stay-at-home Mommy to Maddie who happens to have Down Syndrome. I've been married 16 years to my best friend, having the time of my life. Thanks for stopping by and sharing in our little journey through life.

Thursday, October 24, 2013

Navigating Through Sensory Processing Disorder

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

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 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. 


Thursday, October 17, 2013


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!