Living for the Ones We Love

I hope I outlive my daughter.  

That's probably not what most parents hope and dream.

Nothing is typical when you raise a child with special needs, including your hopes and dreams.  

The life expectancy for an individual with Down Syndrome is 60 years old.  

That means I need to live to be 90 to be around for her entire life.  

Kyle and I have a will and know that if something happens to us, we have family that will take great care of her, but for her sake, I want to be there for her every step of the way.

It's my life's mission, and once it complete, then I'll be ready.

She and I, we're in this thing together...for life.

I understand what Paul meant when he wrote, "For to me to live is Christ and to die is gain. If I am to live in the flesh, that means fruitful labor for me.  Yet which I shall choose I cannot tell.  I am hard pressed between the two.  My desire is to depart and be with Christ, for that is far better.  But to remain in the flesh is more necessary on your account." Philippians 1:21-24

I had a near death experience when I was 20 and at the time I didn't realize what I was trading in, I just knew I didn't want to die.  God honored that fight within me and saved me.  But now, almost 20 years later I do have a better idea of what I'm asking and, like Paul, I am torn between the two.

I want Maddie to be able to be independent and live on her own, but in the reality of her situation, she will always need someone looking out for her.

Not only do I need to live in my 90's but I need to be capable of taking care of myself and another person!  I know it's a big dream, but I also know nothing is impossible with God.

Besides, I think this is a God-planted dream in my heart.

So, how in the world do I prepare myself now for a life that's long and healthy? 

I have to make good choices, every day.

I have to take care of myself in every way possible.

I realize there are so many factors of health outside my control, and I give those over to God.

But there are so many things that I do have control over and I have a responsibility to live my best.

The first thing I've decided to address is diet.  

This sugar addiction is REAL!

I'm on Day 17 of a 21 day sugar detox, and I honestly don't know which is harder:

fighting sugar cravings or running a marathon. (seriously!)

Wow! Was I unprepared for this!

Before starting this, I knew it was a good idea to do a sugar detox, but if you asked me if I had a sugar addiction I would have said no.

I was wrong.

The first week was AWFUL.

And it didn't help that I happened to begin March 13th, which meant the 2ND day of my 21 day detox was Pi day and my husband kindly requests pie for pi day.  

I ask him what kind he wanted and he said "just pick whichever one looks really good"

"You're killing me, Smalls!"

Then I had to look at it for the next week as he ate one piece at a time each night.

The neat thing about our bodies is even though I had put myself in a bad place with my health, it didn't take long to see major improvements.

After 10 days the cravings really decreased and I had way more energy, less brain fog, and no more headaches.

I feel SO much better.  

So far I've lost 3 inches off my waist.  

But more importantly, I've lost my afternoon energy slumps and the overall yucky, heavy feeling!

Can I live a productive life into my 90's?

I don't know, but according to this article about super-agers, a lot has to do with your attitude, and a good dose of genetics helps too.

It just so happens, longevity runs in my family.

My Great Grandpa lived to be 103, and my Granny is 95 and still going strong!

Love you Granny!

So for now, I can stay away from sugar and keep a positive attitude

Photo credit: Maddie Schasteen

 and in doing so, I'll be loving my girl the best I know how!

Funny Things Maddie Says

Finally!!

At 8 years old, I finally get to document some of the funny/cute/interesting things Maddie says that reflect who she is.

It's been a long time coming, and I'm loving this new milestone!!!

Maddie has always been able to communicate whether through facial expressions, signs, or body language, but now she's actually sharing her own, personal thoughts and expressions unprompted.

I never realized how intricate the art of conversation was until a few years ago in speech therapy an assessment broke down the various levels of communication.  

At that time, Maddie was far better at receptive language than expressive, meaning she understood more than she could speak.

In fact, her expressive language was mostly non-existent.  

Language is so complex!

It's remarkable how a brain that struggles to process visual, auditory, and oral inputs can make heads or tails of anything in this world, but Maddie is doing it!

She's a warrior, super hero!

And now, we are enjoying all that she has to offer this world.

Here's a few things that have made me smile recently:

A few night's ago she wanted to bring a book to bed.  It was a Mickey Mouse clubhouse book and not the small, pocket version either; a big, hardback, cumbersome book that she wants to sleep with.  

I told her yes, but immediately regretted the decision when the corner of the book gouged me in the arm.

As she prepared to go to sleep I hear in a sweet, tiny voice, 

"a-night Cickey, a-night Minnie, a-night Donald, a-night Goopy, a-night Donald...no...uh...a-night Tuto, a-night Daisy"

Aww.

Another time we were driving on I-40 passing downtown and she says, "Look Mommy it's Max, it's Max!"

It took me a while, but I finally realized she was talking about Max from the movie Secret Life of Pets. The movie is set in a big city and the high rise buildings reminded her of Max. 😊

Sometimes she still gets things a little wrong but it's so cute.

Like when she repeats back her morning chores. 

First thing in the morning she has to go potty and feed and water Belle.

She'll say, "Ok mommy, I go potty, eat Belle, water Belle."

"I did it!"

Or when she's counting to twenty and she says, 

"ten, eleben, two-teen, turteen, fourteen, fiveteen..."

It makes sense!

And sometimes figuring out what's she's saying is still a puzzle.

Like when she's hugging Belle and and she says, 

"Aw, she wubs me." (Translation, "she loves me")

Or "Whoo, I'm surssy!" (Translation, "I'm thirsty")

These kinds of things we have just memorized are her versions of words.

Once you have taken the mental journey to figure the puzzle out, you don't soon forget!!

And of course the other side of Maddie is her Sassy side.

Maybe it does border on disrespect, but I secretly love her sassy side, (most of the time!)

When I tell her to do something she doesn't want to do, but she finally gives in she says, 

"OK, bine, I'll do it!" With brows furrowed, of course!

Sometimes I find myself just gazing at her, in awe.

I'm so proud of how she approaches life, undaunted by her challenges. 

She's learning more and more each day and growing into her own, unique person. 

I now have a new appreciation for what is usually simple things I know I have taken for granted like the ability to speak what's on your mind!

Valentine's Day 2017

We kept things really simple for Valentine's Day this year.

It was simple but special.

For us, it was just dinner and a movie at home.

We had filet mignon with horseradish cream sauce, cheesy-herbed mashed potatoes, spinach strawberry salad, and chocolate covered strawberries for dessert.

To make things a little special, we had sparkling cider, flowers, and balloons!

Maddie made her Valentine's for Daddy.

She's' been working really hard on writing her "M's"!

She helped clean house before Daddy got home!

And she was in charge of making the chocolate-covered strawberries for dessert!

She had to taste the chocolate for quality control, of course!

Maddie's Valentine's gift was the Trolls movie and she was SO excited! 

We finished up our evening watching the movie in our pajamas!

Hope you guys had a great Valentine's Day too!

Unintended Consequences Change Brings On!

Restructuring our homeschool schedule and curriculum has had so many ups and downs!
Each day I'm learning more about myself, Maddie, and the two of us together.
 Maddie has discovered the THING that just gets under my skin and uses it what feels like 75% of the day!!
Whoo, this is not for the faint of heart...the power struggle is real! 😣
I think the overall decision to change to more structure has been extremely beneficial, but at the same time, it's totally cramping her style!
No more hours droning on and on endlessly with electronics!
No more making up a third option when given two choices!
You expect me to put my own shoes on now...by myself?!
Yep, and we call those life skills!

We are working on a consistent schedule with the same things happening in the same order each day.

They don't necessarily happen at the same TIME every day, but I do try and at least make sure they are in the same order.

We begin the day with Maddie's chores.

Right now that is feeding and watering Belle, and going potty.

She was extra generous this particular day! :)

Then she gets a few minutes with her iPad while Mommy has quiet time to read.

Then, we have breakfast.

Our attempt at Mickey pancakes!

After breakfast it's baths and getting ready for the day.

Next, we take Belle on a walk and work on obedience training with her.

Then, we take a few minutes to play with Belle outside.

After all this we head to the homeschool room and begin the curriculum's lessons for the day.

Our visual schedule.  Definitely one of the best changes we have made.  Maddie LOVES it. And when she's in a particularly feisty mood, she wants to be in control of the order of things! That's a battle I can concede as long as we get everything done!

After work in the homeschool room, it's time for snuggles on the couch with books (my favorite part of the day!)

We are generally finished up around noon, give or take an hour.

On Wednesdays and Fridays we go to speech or occupational therapy.

Then, the afternoons are more relaxed with games, outside play, art, etc.

I found myself struggling against the curriculum, My Father's World- Kindergarten.  There's so much I really like about it, but there's enough that I felt the need to adjust down to her level that I found it was causing unnecessary stress.
I ordered the preschool level from the same company and I think that will be the perfect fit for us right now.

We both are experiencing some growing pains, but I know it's all for the best.

Dissapointment

Raising a child with special needs has its disappointments.

A visit to the cardiologist reveals the hole in her heart is still there and could cause strokes later in life.
Disappointment.
A visit to the endocrinologist means more blood needs to be drawn, which causes extreme anxiety and trauma.
Disappointment.
A visit to the eye doctor and you discover her eyes are getting worse and a new set of lenses is needed.
Disappointment.
You're cleaning up your 8-year-old's third potty accident of the day.
Disappointment.
Birthday parties and social gatherings are a struggle because of sensory overload.
Disappointment.
There's the occasional mean kid at the playground who sniffs out vulnerability and takes it out on your kid.
Disappointment.
A new skill is learned only to discover a week later, it's mysteriously vanished.
Disappointment.

Yesterday's sermon was about disappointment.

The point was made when disappointments come in our lives, it's to serve one of the two outcomes for Christ's mission: to glorify God and/or make disciples.
Beth Moore says things happen 1) for God's glory or  2)your destiny.

The question to ask is not why, but rather "how will this glorify God or make disciples."

How does an extra chromosome glorify God?

Call it a Mom's bias, but I can't look at Maddie and NOT see God's glory.
I don't think you can look at the disappointments and not also see the blessings.

Yes, her heart has a hole, but she uses that heart to love passionately.

Sure the trauma of getting a needle stuck in her arm is extremely unpleasant, but she learns that she's strong and capable.

Maybe she is nearsighted and requires stronger lenses, but she sees things in people that I can't see with my 20/20 vision.

Yes, we are 8 and are still struggling with potty training...ok, honestly I'm having a hard time seeing the blessing in this one! (just kidding, at least all of our digestive systems are working properly, right?)

Social gatherings and sensory overload is complicated and difficult, but we are learning what it takes to be kind to our bodies and meet our needs (which in turn teaches us compassion for others).

Bullies happen to be a part of life occasionally, but what an amazing opportunity to extend grace and mercy.

Skills come and go, but although they may go, the next time around they come back a little easier than before.

Maybe I'm wrong but I believe this is a disciple in the making!

Disappointments are hard and they feel gross, but I hope in your disappointments you may see the glory of God and the work it takes to make all of us a little more Christ-like.

How to Adjust Homeschool Curriculum to Fit Special Needs

We are just about to finish up week 2 of our newly restructured homeschool.

The most important change is our schedule.
We are working hard to do the same things in the same order every day.

We are using My Father's World- Kingergarten for curriculum.

I decided to take 6 weeks and follow it exactly as written, or at least the best we can before we evaluate and make changes.

Two weeks in, and I already know I'm going to have to tweak some things for Maddie's learning style.
We actually tried this curriculum a couple of years ago and I know now why I tossed it aside.
The pace of it all is a bit too overwhelming for Maddie.
For example, the activity to trace the letter in the salt (great idea!) is only set up to do two days of the week.
We followed that model, and by the second day Maddie was actually successful in writing the letter "s."
But this week, we were already moving on to the next letter and when I asked her to review the letter "s", that skill was gone.
It was like starting back over.
Maddie needs a lot more repetition than that.

I really like the themes and fun activities to go along with it, but I'm thinking a lot of it is a bit too advanced for her still.
For example, the first week is all about the sun.
The fact that the sun is 92 million miles away, is made of helium and hydrogen, and is big enough to fit a million earths inside is all lost on her.
We had to simplify to just learn that:
1. God made the sun.
2. The sun gives us light.
3. It hurts our eyes to look directly as the sun.
4. The sun is really hot.

They also have a spiritual component that correlates to the theme.
For the sun, it's Jesus is the light of the world.
We talked about it, but I felt like it was too abstract for her to understand.
I will stick with it, but now I know adjustments are going to have to be made.
I don't think two years ago I knew enough about Maddie's needs and learning style to do that.
I definitely think we can do that now.

Here's a tour of our homeschool room!
Maddie and I both love it.

Here's some photos of our activities from week one:

Reviewing the seasons. 

She says our current season is "snowball fights!"

Oh boy, scissors!  

I'm glad this is part of the weekly curriculum.  

We'll need the practice.

She counts the numbers each day.
Most of the time she can make it to twelve without any help.
Some days she may forget 10 and call it 8, but my favorite thing is when she calls twelve "two-teen!"
So cute!

She loved the salt tray!
What a great way to learn letter formations.

She was so proud of herself when she did it all by herself!

These envelopes are for her letter box.
Each week she cuts out pictures that begin with the letter of the week and we put them in the letter envelope.
Next week, there's a fun game we do with the two different letters.

We read several books about the sun...

After reading Moonbear's Shadow, we went outside and measured her shadow each hour.

And had some fun with chalk...

Another project was making raisins.
We were supposed to put the grapes out in the sun and chart them each day to see how they change.

This was one activity that I felt was a little too much for her attention span, so we just talked about the fact that raisins came from grapes and then we had a tasty snack!

I just wanted to say thank you to all who have been praying for us and wishing us well on this homeschool journey of ours.
I seems like we are at least heading in the right direction!