About Me

My photo
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.

Saturday, September 20, 2014

Homeschooling: Creating the Right Learning Environment

We have begun our homeschooling adventures here at the Schasteen house!  
I was hoping to find a "perfect" private school for Maddie like this one but my search came up empty.

Since I couldn't find what I was searching for, I decided to create it myself...and here we are homeschooling!
We are actually doing a hybrid version of private school/homeschooling.  
She is still attending the private preschool she went to last year two days a week, and I am working with her the other 3 days.  

I still felt it was important for her to be in a "typical" developing environment for a couple of reasons:
1) Maddie can learn so much from her peers.
2)  Since she's an only child, she really benefits from the social interactions she gets while at preschool.  

Although we just celebrated her 6th birthday, she's in the 3-year-old class.
This fits her developmental needs best.  

With the struggles we have had with Sensory Processing Disorder to regulate her system, last year was a tough year. 
We are super fortunate to have the same teachers she had last year again this year! 

I really love the flexibility we have with homeschooling.  
My favorite thing is when Maddie comes to ask me, "wanna play?"
And I say, "yes!"

And we sort Easter eggs.
 and then line them up to create a pattern.
As a side note, do you notice the rock-star-type device she's wearing?  
That's her bone conduction therapy device.  
It's amazing!!!
We began doing music therapy with her last October as an Integrated Listening System to treat her SPD.  
Although we saw a bit of progress, we eventually hit a plateau and then digressed a bit.  
And then came the bone conduction therapy! 
At our last OT visit, Maddie is FINALLY looking like a regulated child!!!
What we spent 7 months trying to accomplish with music therapy, we finally accomplished within 14 weeks of bone conduction therapy!!!!
It basically bypasses the auditory system altogether and relays sound through the bones (like in utero).  This, in turn, trains the brain to receive and process information differently.
And this has made all the difference :)

OK, back on track wtih our homeschool story...

 We read one of our library books...






 Maddie re-created the steps in the book, learning sequence and number recognition.



And then her favorite part...
We got in a lot of gross motor play running around the house from the bear!

We also worked on fine motor skills while practicing pouring beans.

She uses her ipad and this stylus to practice writing all of her letters.
With other ipad apps, she can name all of the shapes including pentagon!

But my favorite accomplishment of hers has to be her amazing puzzle skills.
By the end of the week, she put together a 24 piece puzzle all by herself!  Wow!


She didn't really want me to tape her, so I didn't push my luck, but later this same week, she did the puzzle from start to finish with no help from Mommy!!

I love this series of photos because it shows her sheer determination.
These puzzles do not come easy to her, but she's so stubborn she's going to get it done!!


So far, homeschooling has been working great for us.
I love that I feel like I've got a handle on where she's at developmentally and what goals are appropriate for her.
I love getting to see her accomplish tasks and persevere through her frustration.
I also love the flexibility.

That's some highlights of our first couple of weeks.
I hope to keep posting to keep me accountable and also have a record of her progress.
(plus it's great for Grandma to see what she's doing to help us set new goals!)
We are spoiled to have a Grandma with TONS of experience  and expertise in teaching little ones!

Wednesday, August 27, 2014

A Monumental Moment

This image probably won't stand out to anyone else but me.  
I knew it was worth capturing the moment I heard the words, "I did it!"

This image represents courage, facing fears, and overcoming real and present obstacles in life.  

And I'm so proud because my baby girl, "did it!"

We had somewhat of a traumatic experience with our second sleep study.  
The technician taking off the "stickers" on Maddie had no mercy!
He ripped them off, I'm sure thinking that was the best method.  

Maddie was wailing.
With 27 wires hooked up and several more "stickers" to rip off, it was torture.  
She looked like she had a rash when it was all said it done.  
Her skin was irritated with bumps and red spots which stuck around for several days.  
It hurt!

So, when we went to the cardiologist Monday morning and the technician announced she was going to put a few "stickers" on for an echocardiogram, Maddie was in full-on panic mode.  
Normally she's a flight responder when it comes to stress but that day, she was going to FIGHT!
While I had to hold her down (the worst feeling in the whole world, btw) the technician somehow managed to get all of the sticker tags on.  

Maddie was NOT going to let her connect any wires though!

She fought hard.
And won!
Looking back she probably saved us several hundred dollars ;)

The Dr. came in and did things the old fashioned way with nothing but a stethoscope and was able to ease all of our concerns about an irregular heartbeat.
She has what's called a sinus arrhythmia, which is very common and considered normal.

Now with were left with all these "stickers" all over her chest.
I tried reassuring her that we could use a wet paper towel and ease them off, or we could use soap and slide them off.
She was having none of it!

So we wore them home.

When her daddy came home, she showed him her chest and said "hurt" and started crying!

I decided we would just attempt to deal with them in the bathtub.
I put "magic bubbles" in to 'get those stickers.'  

She apprehensively got in and I stepped back and gave her some space.
I knew this was something she would have to have control over.

In my mind I was thinking we would have to wear these stickers for weeks waiting the adhesive to give out.

And then I heard her proud, tiny little voice exclaim, "I did it!"
She had taken off the first sticker all by herself.
She faced her fear of pain and conquered it.

All. by. herself!

She took every single one off.
Her skin is still irritated with red little squares marking the spots her "stickers" taunted her.
I'm so proud of her.

I hope she carries this lesson with her always.
And just in case she forgets, I have the documentation to remind her what she's made of!


Sunday, August 10, 2014

Progress with Sensory Processing

We have a live-in house guest in our sandbox outside.  

This little guy has taken up residence and has been there all summer long.  
He usually hops on out as soon as the commotion of the building of the sand castles commences.  

Yesterday, however, he lingered a while.  

Maddie has never noticed our one-eyed guest...
until this day!


When she saw him hop away, she didn't hesitate. 
She had a plan. 
She grabbed and sifter and the chase was on!


Lucky for our frog friend, he narrowly escaped.  


Maddie, however, was clearly disappointed.  
She began calling out to the frog and looking for him. 
And then, finally, resided in the fact he was gone, she sat down for a rest.  

This seems like an every day childhood occurrence but for us, this is BIG, BIG progress!!
For instance, this is the first time Maddie even NOTICED the frog, which indicates an awareness of her surroundings.  
Before this, she would have been so defensive of all the information her brain was trying to receive that she would just shut everything out, therefore not noticing the world around her.
Secondly, she PROCESSED what to do with the frog.  
She thought through the idea of catching him with her strainer (brilliant!) and proceeded to try and make that happen.  
Of course all this happened in a matter of seconds, so for me I had never realized watching normal kids how amazing this is, but Maddie has a processing disorder that has never allowed her to fully process a situation like this...UNTIL NOW!!!
I am so excited and so proud of her.  
We have been using a method of therapy called Bone Conduction Therapy that has really been the turning point for us.  
I'm so grateful for our wonderful Occupational Therapist who didn't give up on Maddie. When the music therapy wasn't getting the job done, she was just learning about bone conduction and decided to give it a try.  
I'm so glad we did!
Even though she's been doing this for over 20 years, she's still pushing herself to learn new techniques and find the best path for the kids she sees.  
Amazing.

New discoveries like our frog friend are now happening every day and life is getting super interesting for her and me!

Monday, August 4, 2014

Purpose in the Pain

For the last three weeks, I've been attending a digital storytelling workshop for survivors of the Moore tornados.  

Here's my story...

Tuesday, July 1, 2014

Dodging a Parenting-Fail!

My life is full of most embarrassing stories. 
I could go toe to toe with Bridgit Jones and her diary and I just might win. 

While at the hospital, I narrowly escaped yet another story to add to my collection.
More on that later.

First, I'm happy to say that Maddie is home and although recovery has its ups and downs, for the most part we are well on our way to being good as new.  

So, back to the story...
There are a few things we do in life only because motherhood/parenthood requires it.  

For me it's things like:
1) Donning a bathing suit
2) Sharing my secret chocolate stash

Such sacrifices as these award you that ever-pleasing self-pat on the 'ole back. 

And then there are more serious times you just have to be there for your child because that's what love is.  
You are there to hold their hand and tell them everything will be ok (even if you don't know that it will be)

For some strange reason, the hospital has this rule that only one parent can be present in the recovery room after surgery.  
I was the chosen one.  
I was ready to be there for my baby when she woke up because that's what a good mother does.  

But then...
I saw it.

The blood trickling out of the corner of her mouth.
Uh-oh.

Did I ever mention that half of all my most embarrassing moments have something to do with blood?
Like the time I passed out cold because my friend's diabetic mother had to prick her finger for a reading?  
I don't do blood.  
It's not in my parent manifesto.  

I asked the extremely pleasant nurse if this was ok and like the good mother I was supposed to be, she reassured me it was just fine. 
After a washcloth was placed on the bed to soak up all that blood (seriously, we are talking like huge, pea-sized circular stain) I fought really hard to keep things together.  

And just then, the doctor comes by to talk to me about how the surgery went.  
He had pictures. 
Yay! Pictures!
Don't pass out...don't you dare pass out.  Keep it together Sam!!

I'm not sure I made eye contact because at this point the room was spinning and beginning to feel quite small.
I stared at what else but the pictures of the insides of my daughter's trachea.  
I had no choice but to disengage.  
When I finally snapped out of it, the doctor was pointing to the last picture and I heard him say, 
"so this is definitely something we need to watch out for in the future."  

Ummm, Say what?  

Luckily, he met us up in our assigned room later that evening and explained everything once again with Kyle and I both present! 
Phewww. 
Totally dodged that parenting fail! 

I stepped up my parenting game with an organized piece of paper detailing times medications were given.  Yay, that self-pat on the 'ole back is nice.  :)  



 




Saturday, June 21, 2014

Maddie Get Her New Glasses!

After we finished at the splash pad yesterday morning, we stopped by and picked up Maddie's new glasses!

They are so cute!!  

The prescription strength increased from a +2 to a +3. They are really strong!
Her astigmatism has gotten worse in both eyes, but her crossing has gotten better!

I hope she keeps these on not only because she needs them but because she looks so stinkin' cute in em too!

Thursday, June 12, 2014

Sleep Study - Check!

Wow, I'm glad that's over!
We survived our sleep study and now will wait about two weeks for the results.  
Maddie was such a little trooper!  
She really enjoyed her bracelet :)  
Our appointment was for 9:00, but they didn't get her ready until 11:30.

She nearly fell asleep around 10:30 but held on.  



 Finally, she was all set and ready to go!

I really worried that she would not like all those probes and stickers put on her.  
I tried to prep her for what would happen, but it was kind of like the blind leading the blind!! 
I had no idea what to really expect.  
I just told her they would put a whole bunch of stickers on her.  

She was ok with most everything except the one on her throat to monitor her snoring.  
She did NOT want to leave that one on.  
After a good bit of coaxing, and finally allowing her to put it on herself, she left it there.  

She really liked that her finger lit up!!

She really didn't like the nose piece.
She kept trying to lick it with her tongue!!  Haha :)  

It was probably midnight before she actually fell asleep.  
I was shocked by how terribly she slept. 

I knew she snored and occasionally had trouble getting air.
Either I was blissfully ignorant or this was truly the first time this happened but she would literally sit straight up, gasping for breath!
And not just once, multiple times!
I'm very curious to get the results because it felt like an endless night of not much sleep, but I wonder, in reality, if things were different. 

At one point, in a sleepy stupor she got really irritated with all of the wires and threw a little fit while still sleeping. I had to chuckle at that, because that's exactly what I would have wanted to do too!
We were able to end our session about 20 minutes early because she was awake anyway.  
We got back home around 6:30 a.m. and she's been sleeping ever since. (2 1/2 hours)