Wednesday, February 15, 2017

THE Weekend Has Almost Arrived

The date has been on the calendar for several weeks...PT Weekend.
In case you don't know what PT weekend is...it's potty training weekend.

We first started working on toilet training with Big C several years ago. While we've had a bit of success, and without going into too many details, we are far from our ultimate goal in this area.

Thus, along with his therapy center, we have picked this weekend as THE weekend for Big C. I'll spend all day Friday at the center giving Big C lots of liquids and learning how to run the toilet training program at home.

His supervisor is very excited and says this is one of her favorite things to teach.

I am so glad for the different skills people in this world have, and I'm thankful that God has put someone in our lives who is super duper excited about potty training!

I will not be leaving the house this weekend. Pray for patience for us and for Big C not to hate this new skill.

Wednesday, February 8, 2017

The Cost of a Chewy Necklace

For those of you know me and my budgeting ways, you may be surprised to know that I spent hundreds of dollars on a necklace!

Not a necklace for me. A necklace for Big C.

The necklace journey began late last spring. Big C has always been a bit of a chewer, particularly when it came to his coats. He chewed on his coats so much during his bus rides that eventually little bits of zipper would disappear.

Obviously not good!

So I started brainstorming how to stop the chewing of the coats. I tried big-kid bibs (the really nice, expensive kinds), but that didn't work. He just moved the bib out of the way and continued to beaver away on the coat.

Then warmer weather came; the coat got put in storage, and I forgot about the chewing. Until he started chewing his shirts.
He'd pull up his shirt and chew around the bottom of it. He's done this before, but this time the shirt-chewing soon became a habit and almost every single one of his shirts had holes running along the bottom.

So a new search began. I figured I should find a chewing replacement to save his shirts and to keep him from showing off his six pack every time he pulled up his shirt.

Enter the chewy necklace. I discovered several companies that make:
non-toxic sensory chewelry for those with a need to chew. Stylish and FUNctional, this wearable chewing solution provides a safe way to use oral motor input to assist in minimizing anxiety and stress.
This was the answer, I thought. A necklace that Big C could chew on instead of his shirts. Little did I know that the answer was more complex than that!

So I ordered Big C's first chewy necklace. It was stylish, shaped like dog tag, didn't stand out too much as an "autism" tool, was pretty cute. I liked it.
When I ordered it, I discovered that there were different levels of chewers.

The dog tag necklace was approved for mild chewers. I wasn't really sure how a mom would rate her child's chewing level, but I figured Big C fell in the mild chewer range.

Oops. I was wrong. I should have known that a kid who could chew up zippers was not a mild chewer. First $20 down the drain. Big C destroyed that necklace within a week.

Ok, so the search was on for a more durable necklace. The next one I ordered was rated for moderate chewers. That should do the trick, I thought.

It lasted longer than the first, but within a couple weeks Big C had chewed away the part of the necklace where the string was attached.

Another $20 chewed up.
And thus went the search.
At long last, and hundreds of dollars later, I finally found a chewy necklace he hasn't destroyed. It's a rather noticeable, chewy bangle (not the cute, stylish necklaces I loved). I strung the bangle on a break-away cord and - voila! - a necklace. (That was a whole other cost...finding a cord he couldn't chew to pieces in a day.)
Of course, now that I have found a solution, Big C doesn't seem to chew as much. In fact I've gone a couple weeks recently without putting the necklace on him.

At least I know which chewy necklace to recommend if anyone has a child who falls in the heavy chewer range!

Naturally I wish it hadn't taken me hundreds of dollars to find the chewing solution. But this is part of the special needs journey. Searching and networking and praying and googling - trying to find answers, resources, tools, adaptive devices - whatever will help our kiddos navigate the world around them.
And for many parents, the cost of searching for resources is much more expensive than the quest for Big C's necklace.

For our family, with the chewing dilemma solved, we now move on to a bigger search - finding an adaptive jogging stroller. Big C loves to go on walks with us when the weather is warm, but he is just too big to fit in a regular jogging stroller. Adaptive strollers run in the thousand dollar range, so, hopefully, this time I make the right choice on the first try!

Friday, January 20, 2017

Fall Soccer 2016

I think this will be my last 2016 post!

J and Tweety got to play on the same soccer team last fall. It was fun to hear them encouraging each other (and so nice to only have one practice and one game each week!)!

The coach gave Big C a shirt...he was their biggest fan!

 Tweety ready to back up J if needed!


I loved seeing them play together! J loved to help Tweety learn new skills, and she actually appreciated his extra coaching (usually!)!

Thursday, January 19, 2017

Christmas at Home 2016

Before traveling to Kansas for Christmas, we had our own little family Christmas at home.

J and Tweety serenaded Aunt Jenna that morning in the barn to let her know it was time to open presents!
 They crack me up!


 Big C mostly got cars and balls for Christmas...his favorite things!
 So entertaining!
 Aunt Jenna is the expert at putting together toys that come with lots of parts.
So thankful for our little family and spending time together!

This was our Christmas card pic. I know...I'm so not good at making sure we're dressed cute and perfect! Oh well! This is our life!

Sunday, January 15, 2017

Kansas Christmas

I've been itching to write more, but I keep thinking I can't write anything until I finish up 2016, so I'll try to finish 2016 posts this week and move on to new things!

We traveled to Kansas for Christmas this year! Mom's house was bursting with chaos and happiness and love! There are 13 adults and 21 grandkids!

The kids were super happy to stay in a hotel on the way there and back!
  Favorite game of the week!
 Big C loved his uncles again this visit.
 All the grandkids with my mom. Big C was not so fond of picture time.
 The whole family!
 The best picture moment...mom finding out that my youngest brother and his wife are expecting their first baby!
 I rarely saw J and Tweety...they were always with their same-age cousins playing outside. But they both also loved spending a little time with the little cousins
 

Saturday, December 31, 2016

A Time for This

I know the words almost by heart:
"For everything there is a season,
And a time for every matter under heaven:
A time to be born, and a time to die...
A time to weep, and a time to laugh,
A time to mourn, and a time to dance..."
Facebook, with all its faults, often brings these seasons crashing in on each other.

Yesterday I was scrolling through posts on facebook, hurrying past news articles and memes, looking for updates from friends.

The three posts came almost one after the other in my newsfeed.

One post, accompanied by a picture of a smiling couple and a sparkling ring, announced an engagement.

Another post, this one with a picture of a couple nestled together against a stack of boxes overflowing with stuffed animals and a baby blanket, announced the arrival of a baby coming this summer.

And the third post, sandwiched between the other two, came from a young friend, scarcely past the newly-wed stage in her marriage:

"Thank you for all the love and support today, it has been the hardest day of my life and I could not have gotten through it without all the friends and family surrounding me. Earlier today my husband went to be with the Lord. He collapsed suddenly at work. They still aren't quite sure of the cause."

A time for everything. Laughing and dancing. Mourning and weeping.

Jubilation in wedding and baby announcements. Devastation at the loss of life and newly-wed bliss snuffed out.
We are, most of us, well acquainted with this carousel of seasons whirling in life. While we wish to hide from pain and seek dancing instead, there is no hide-and-seek to play. The seasons - they just come.
Nearly 13 years ago, within the span of almost two months, I celebrated the tiny life growing within me; I mourned the miscarriage that started on Mother's Day; I wept at my dad's deathbed; and I rejoiced at my brother's wedding.

It is now nearly time for 2017 - time for new seasons of weeping and laughing and mourning and dancing.

And while many people are contemplating their New Year's resolutions, I am sitting here, an hour before 2016 slips away, wondering about the seasons to come this year.

It's easy to fear 2017's seasons, not because I know of hardships ahead, but because I don't know. And my imagination is an active foe to peace. I have not since experienced the intense juxtaposition of grief and joy that came in 2004. But I haven't forgotten it either.

My friend who just lost her husband also wrote these words:
"I'm not sure what God's plans are, but I hold tight knowing that ALL things He does are good, and in all things He brings glory to His name! I take heart in knowing that C is with his maker and gets to worship Him face to face for eternity! This life here on earth is not the only life for us. Trust in the Lord with all of your heart and believe in Him and you will have the same eternity! To God be the glory in all things!"

I thank God for her steadfast faith. And I cry.

She reminds me, here on the eve of a new year, that now, and always, is the time for this: complete trust in my Almighty God, in whatever season and time he places me. 

There is a part of me that wants to pray, or demand, that God give seasons of gladness this year. But, as he works to transform me, the prayer I really want answered is that I will echo the words of Job, no matter the season:
"The Lord gave, and the Lord has taken away; blessed be the name of the Lord."
Pray with me for my friend. Now is a time for this.

Tuesday, December 6, 2016

That's My Brother

J had his first ever middle school band concert! Simple songs, squeaking reeds, off-tempo drums, but oh so fun! I know it may sound torturous, but I really loved it!

We were slightly amused by the flock of parents who rushed to the front to take pics of the 6th grade band. The 7th and 8th graders had nary a photographer. I guess once you get past 6th grade, the middle school bands are old news!

Big C sat through the whole thing...half the time his fingers were in his ears, but I was so proud of him for making it through the entire concert!

Afterwards, Matt's parents and Jenna came over for pop and ice cream. Apparently treats after concerts is a tradition in Matt's family from days gone by, and now it's continuing with the next generation!
Aunt Jenna and the trumpet player
Before J went to bed, I asked him if the concert was fun. "Yes," he said, "it was fun." But then he added, "I was sad, too. Some of the kids were making fun of Big C and the noises he was making. I didn't like that."

It's true. While Big C was mostly quiet during the concert, he did have several moments where he made noises, some from excitement and some from exasperation when the band director talked too long! I had hardly noticed. Sometimes I forget how Big C's loud exclamations might sound to people who aren't used to them.

"What did you do?" I asked J.

"I said, 'That's my brother.' And then they stopped."
There is so much love in that simple statement - "That's my brother."

J could have pretended he didn't hear what the kids were saying. No one could really see who was producing the noises. He didn't have to claim the kid making funny sounds. But J didn't want kids making fun of his brother, even if Big C was oblivious to it all.

And then J added one more thing before going to bed. "Big C helps me," he said. "He helps me know who my true friends are."

How did my 6th grader get so wise?