Hide and Go Seek - Maddie-style

Thanks to her cousins, Maddie has learned the great past time of hide and go seek. 

When it's her turn to count, you gotta be quick because she currently only knows how to count to 2!

If you're lucky, she may count two rounds of two, giving you 2 extra, coveted seconds.

She may not quite understand the true concept of the game because when it's her turn to hide, after you're finished counting and you shout, "ready or not, here I come" she immediately stands up with great exuberance and enthusiasm exclaims, "here I am! I'm over here! you got me!"

the hiding behind the pillow cracks me up!

I just love these times.   

Snow in June!

My Mother-in-law told me about the blog Growing a Jeweled Rose.

It is chock-full of really fun ideas to do with your kiddos.  

What I really like about it is so many of the ideas are sensory oriented...totally speaking Maddie's language!

We made their Frozen Snow recipe the other day.

If your kids are crazy about the movie Frozen, like Maddie, she has a ton of activities relating to the movie on her blog!!!

The recipe was quick and easy and since we used hair conditioner, it smelled divine!

We didn't have the Frozen figurines she uses, but since we just visited the Kansas City Zoo and met the penguins, we threw some penguin figurines into our frozen snow for some fun!

This is one of those late-in-the-afternoon-how-much-longer-till-Daddy-comes-home activities.  

It takes hardly any time to mix up, simple enough for little hands to help create, and then you just take it out on a nice day, grab the camera, and before you know it, you realized you have survived yet another long, summer afternoon! :) 

It feels cool...(pun intended!)

It made us happy!

until, oops, we flung it up and got a little in our mouth...yuck!

After awhile, Maddie realized what's good for the hands and arms was also good for the feet!

And what's good for the hands, arms, and feet, is really good for the whole body!

And most often, sensory play totally mellows her.  

What her body doesn't do for her normally with sleep/wake regulation cycles, sensory play helps achieve somewhat of the same result. 

I originally thought this would last awhile, but for us, about an hour of great sensory play is all we got! Every bit of it was poured out on the patio!

Good thing it's simple and easy to make!  

Will definitely keep this idea on the "I think we've had enough T.V., let's do something fun!" list. 

A Summer of Sleep Studies and Surgery

Maddie has to have a sleep study and then surgery to remove her tonsils and adenoids.  

She began snoring a few months ago so I suspected she may have sleep apnea, which is really common for kids with Down Syndrome.  

The solution for sleep apnea is to remove the tonsils and adenoids.  

There just isn't enough room for them all to coexist since everything is smaller than usual (except the tonsils).

We have a really great doctor, so we know she'll be in good hands.  

It's still nerve-wracking.  

I remember hearing about a little boy with Down Syndrome in Tulsa, OK who died after having a tonsillectomy. 

I know from experience there's no such thing as "minor surgery."

Her sleep study is next week and we will schedule the surgery sometime later.  

 

Searching for the Right Place for Maddie

If only we had a school like this close by!!

Bearden Family Photoshoot

The Bearden's are a beautiful family, inside and out!  

We had the perfect formula:

beautiful weather + beautiful location + beautiful family = perfect photoshoot!

Here's a few of my favorites

Antioch Christian Academy 8th Grade Class

It has been very special privilege to work with Antioch Christian Academy.  

I have taken their school photos for the last two years.  

So, when the 8th grade parents asked me to take pictures of the class for graduation, I was so excited.  

Let me tell you about these guys,

They are a special group of kids! 

This last spring as I was driving to the school to take class photos, I was thinking to myself 'how am I going to unload, get everything set up, get Maddie to class, and be ready on time?' 

I wasn't sure how, but I knew things would work out somehow.  

And then, I pulled into the school parking lot and before I could even put the car in park, out comes each one of these guys ready to help!!  

It was so awesome.  

I took Maddie to class and by the time I got back down to the auditorium, they had everything unpacked and were waiting for further instructions on how they could help. 

I'm going to miss their bright smiles and helpful attitudes!  

I wish them all the best in their new season of life.

The Truth About Down Syndrome No One Ever Told Me

When Maddie was born, there were a lot of things about Down Syndrome that we knew nothing about.  

Hours after she her birth our pediatrician came in to tell us the news.  

She said she was about 90% certain Maddie had Down Syndrome but the blood tests would be ran to confirm it.

She listed several physical characteristics:  almond eyes, flatter bridge on her nose, the turning in of her pinky finger, the extra space between her big and little toes, something about her chest, etc.  

I had no idea there were so many physical attributes unique to Down Syndrome.  

My favorite is the brushfield spots in her eyes. (they are beautiful!)

In terms of her physical attributes, it was rather delightful learning all these things about our new daughter.  

We were surrounded by positive energy, a loving family, and an extremely helpful support group.

We knew there was an increased risk for:

•  thyroid disease
•  type 1 diabetes
• heart defects
• leukemia

What no one ever mentioned is the likelihood of a dual diagnosis.

Maddie has a dual diagnosis of  Down Syndrome and Sensory Processing Disorder. 

In everyday life it means Maddie does not have a sleep/wake cycle.  

She's physically incapable of falling asleep before 9:00 or 9:30, sometimes 10:00 each night.  

She sleeps for a few hours and then comes to our bed around midnight or 1 am.  

Once she gets to our bed, she does not have a sense of grounded-ness and is constantly needing to find her boundaries.

Which means she uses her legs to push on me throughout the night for an awareness of the space she's in.

Otherwise, she feels like she's in a free-fall all night long.  

As a result of all of this, I've developed a few sleep/wake issues of my own!

Usually around 3 am, I make my way to the couch to try and get some sleep.
 Insomnia sets in and I have to work really hard to get back to sleep. 

SPD also means that Maddie grinds her teeth nearly constantly throughout the day.
Because of that, we can add Cranial sacral Specialist to our repertoire of  specialists we now have in our schedule.
We are trying to prevent headaches and issues with TMJ.

I also need to contact her ENT because she has began snoring at night and has an increased risk of sleep apnea.  

It's not just the physical issues we are dealing with. 
She has reached the defiant stage in her development and her behavior has really been challenging to say the least. 

It's overwhelming and exhausting and I know every Mom out there with special needs kiddos knows exactly what I'm talking about!
We stay awake at night wondering if there are any other issues we have overlooked or need investigating. 
We over analyze the small things.
We wonder if our kids are really able to understand what we are trying to teach them.

We have to remember medications, work in daily therapy, yet try our best for a "normal" life experience.

Yesterday a friend asked me if I ever ask why God made her disabled.
The question surprised me.
Maybe I've been too busy to ask why. Ha!
I'm not sure it's worth expending too much energy, but it's not necessarily a bad question.

I may not ever fully understand why.
I do trust there is purpose here.

 She's the joy of my life!!