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!

Maddie + Belle= Best Buddies

This budding, new friendship is such a joy to sit back and watch.

Since the beginning, we have always had intentions of training Belle to be a service or therapy dog for Maddie.  

For the first few months I found myself a wee bit overwhelmed working to potty train both dog and child, and as a result, much of the obedience training took a back seat.

With things going better in the potty training areas for both dependents, we are now able to focus on obedience training for Belle, step one of therapy training.

I have been really surprised however, how innately things have come to Belle.

Several weeks ago Maddie fell asleep on the couch.  

We went to bed and left her to sleep on the couch. 

At some point in the night, she began coughing with allergies and drainage.

I heard Belle in her kennel whimpering.

She only does that when she's sick and needs to go outside.

"Oh no, I wonder what she ate this time."

I got up to let her outside, thinking she would bolt for the door.  

Instead she came out of her kennel and headed straight for the couch.

With her tail straight out, she leaned over and smelled Maddie.  

I said, "See Belle, she's ok."

Satisfied, Belle went back into her kennel for the rest of the night.

Then, few weeks ago Maddie wanted Belle to sleep with her in her bedroom.
Maddie still needs one of us to be in there with her when she falls asleep, so it was the three of us on her little twin size mattress.
It worked out OK, since Belle stayed at the foot of the bed.

Maddie was particularly restless that night, rolling and tossing and turning.
She couldn't keep her legs still, and Belle went over and just laid right on top of her.
Before long, Maddie settled down and fell asleep.
It's like Belle was her weighted blanket for the night!

When Maddie talks about Belle she says they are best friends.
And she often says, "aw look Mom, she loves me!"
And I say, "yes she does.  She loves you very much."

Her only vice, so far, is the trash can!

She's a goofy little opportunist waiting for a tasty treat!

We really need to get a trash can with a lid. 😜

How's Maddie Doing?

A simple question.

Not so simple to answer.

How is she doing?

I don't know if all mothers evaluate this question around this time of year, or if it's a homeschooling thing, or a special needs thing, but it seems like January always begins the reflection of what the year has held and begs the question, how is Maddie?

In December we received a devastating reality check with the results of an assessment performed for Occupational Therapy.
I knew Maddie wasn't functioning at her chronological age in most areas, but I had no idea how far behind she was in fine motor skills.
It's true what they say, ignorance is bliss.

I've been trying to step outside our status quo and see ourselves from a fresh perspective.

I've been studying personality types and learning styles, and specifically how they affect homeschooling.
At 38, I can pretty well peg my personality type and learning style.
It's much more difficult to pinpoint Maddie's.
Sometimes it's hard to decipher if she does things as a compensation for her sensory processing disorder, or if that is her true self.
If I were the only figure in the equation of homeschooling, I can envision the most amazing homeschool, and it would more than likely resemble project based learning, or life learning, or "unschooling."

Of course, the trouble is this homeschooling thing is not really about me or for me, is it?
So, what's best for Maddie?

After careful consideration, I have come to the conclusion what's best for her is exactly opposite of the natural way I'm wired.
"Isn't God so funny?"
"Hilarious", she answered sarcastically.

It's hard to know for certain what's best for Maddie, but I won't ever know if I don't experiment and see what works.
I feel like the last year and a half I've been trying to do it my way and now we've ended up with devastating results on an Occupational Therapy assessment.
Time for a new strategy.

A mentor once told me when trying new approaches, give it 6 weeks or 9 weeks or whatever period of time, and really commit to it. At the end of the time period, evaluate and see what's working and what needs tweaking.

So, I'm going to take that advice and step outside what feels natural in the attempt to enter into Maddie's world and how she sees things.
My hunch is she likes order, structure, the same things every day, knowing what to expect and when to expect them.
For me, I kind of get a little excited with some chaos, doing the same things over and over is absolute torture, and I feel dead inside when there is no spontaneity.
(I also tend to be a bit dramatic.)
I'm a romantic idealist.
However, I'm excited about these next 6 weeks.
If structure and routine and order are the keys that unlock her potential, sign me up!
I'll do whatever it takes.

And you know what?
I have a feeling God was not being sadistic when pairing two opposite personalities together for this journey.
There are so many things we can learn from each other.
It's really a grace-filled act of love to be given the opportunity to stretch and grow and appreciate each other for the unique ways God has created us.

See, I told you, romantic idealist through and through!