special needs

Sunday, March 22, 2020

Modern-Day Joshua Stones


I have a love-hate relationship with social media. On one hand, Instagram and Facebook can be time-suckers, relationship-killers, and potential breeding grounds for comparison and judgement. My mind and heart need limits and boundaries and down-time from screens and technology. But, one thing I do appreciate about social media is how it can serve as an online scrapbook of sorts. Posting on blogs, Facebook, or Instagram is a much easier way to document our days, our Big Moments, rather than ways of the past such as Creative Memories. Typing those two words, Creative Memories, makes me a little nauseous. Jesus, take the wheel. I can write words on the internet all day long, but please don’t ask me to cut zig-zag corners and strategically place stickers all around one big gigantic picture of my two-year-old licking her ice cream cone. The very thought of this task makes me want to cry a million tears (and would also take me 542 years to complete, so the odds are not in my favor.).  
I digress. 
Some of you know we have been praying, for years, for Clara, our oldest daughter with a rare genetic syndrome, to talk, and for her communication to develop and understanding to increase. Specifically, we have prayed for God to open Clara’s mouth and allow her to speak with words. He has answered this specific prayer twice, when Clara vocalized the words, “Hi,” and “No,” when prompted by her teacher at school. 

Well, a few weeks ago, God answered this prayer again. No, not by opening her mouth in our presence. But, through the form of increased awareness played out with the push of a few powerful buttons on her AAC device (Augmentative and alternative communication). So, we are marking the moment, friends, writing it down intentionally for the internet to read, as a permeant memorial so to speak.  Our very own modern-day Joshua stone. 

In Joshua 4:1-8 God commands the Israelites to cross the Jordan River (which He has stopped miraculously). To commemorate their crossing, God instructs Joshua to mark the moment by choosing 12 stones from the middle of the dried-up river. The Message translation of this portion of scripture describes the scene . . . 
4 1-3 When the whole nation was finally across, God spoke to Joshua: “Select twelve men from the people, a man from each tribe, and tell them, ‘From right here, the middle of the Jordan where the feet of the priests are standing firm, take twelve stones. Carry them across with you and set them down in the place where you camp tonight.’” 4-7 Joshua called out the twelve men whom he selected from the People of Israel, one man from each tribe. Joshua directed them, “Cross to the middle of the Jordan and take your place in front of the Chest of God, your God. Each of you heft a stone to your shoulder, a stone for each of the tribes of the People of Israel, so you’ll have something later to mark the occasion. When your children ask you, ‘What are these stones to you?’ you’ll say, ‘The flow of the Jordan was stopped in front of the Chest of the Covenant of God as it crossed the Jordan—stopped in its tracks. These stones are a permanent memorial for the People of Israel.’”
An intentional, permanent memorial.

Back to Clara . . . 
I drove down highway 59 a few weeks ago and noticed she was acting a bit off for her usual drive-to-school self.  Her face pale, a little zoned out and well, just not typical Clara.  No fever (Why yes, I did put the car in park once securely stopped at a stoplight and reached waaaaaaay in the backseat to feel her head. I do not recommend this.). Going against that mama-gut feeling I dropped her off anyway, told her aide she seemed a little tired, and saw her out of the car. 
At 1:00pm I receive a call from Clara’s lead therapist. . . 
“Hi Brittnie. We wanted to let you know Clara isn’t herself today. She looks pale and has zoned out multiple times. She is just not acting normal. She was even spitting out her food at lunch and wouldn’t even touch her fruit.”
(Clara not scarfing down fruit is a red flag. We basically have to take out a loan to fund the strawberry and blackberry bill.)
Minus the food spitting, all the very things I noticed on the drive to school were now confirmed by her teacher. 
“I also wanted to let you know that when we gave her the iPad and asked, “What do you want?”, she pushed “I feel sad. I’m upset. I feel sick. I want to go home.” 
I’m sorry. I just fainted. What was that you said? She pushed all of those buttons, to express HER FEELINGS IN CONTEXT??? As in, on her own, on a day that you and I BOTH NOTICED PHYSICAL SIGNS OF ILLNESS? THIS HAS NEVER ONCE HAPPENED. NOT ONCE. 
“I feel like we need to positively reinforce her for vocalizing her feelings and needs. Would you like to come get her?”
Do I want to come get her? I. Am. On. My. Way. 
Friends, we pray and pray and pray some more for the things our hearts deeply desire. Sometimes God answers with a yes, a no, or a not yet. And sometimes, He answers yes with a twist. Sometimes, He answers yes in a way that forces us to intentionally look outside the box of ideal answers and praise Him for the sideways course His answer took. 
I don’t want to miss the twist, friends. I want my eyes and heart open to the ways He is working day in and day out, even if His works differ from my initial prayer lifted. 

And when He answers, regardless of the how, I want to intentionally mark it down. I want to intentionally set up stones of remembrance to say, “Look at what God did here!” I want to leave a trail of modern-day Joshua stones. I want to leave behind a stone-filled legacy so that my children and their children will always know that our God is good, and He is always moving on our behalf, and that sometimes His answers don’t come in the form of a straight line.  
Just please don’t ask me to do so via a larger than life scrapbook. 
. . . 
How do you remember God’s kindness? How do you document His answers for the generation behind you? What step of intentionality can you take today to tune-in to his “yesses with a twist?” 
. . . 
(This article was first written & published for my work with the CEO Forum Women's Ministry Monthly Newsletter.)

Wednesday, January 8, 2020

6th Annual Cohen Syndrome Association Fundraiser Results

FRIENDS AND FAMILY . . . 

Results are in and you all SHOWED up for the Cohen Syndrome Association!

Between Crowned Free sales (my sis and I went into business together!), the silent auction, and personal donations, YOU raised a total of $4,432.53 in 2019! What in the world?! A record!

Thank you all so much for the love and support year after year. We feel so lucky to know each and every one of you. 🧡🧡🧡🧡🧡








Tuesday, December 10, 2019

Special Needs Potty Training . . . Take Two . . . Two Years In

Hi. My name is Brittnie and I have a blog. Apparently 2019 got busy and I forgot how to post in long-form. Well, that's not true, but Instagram makes it so easy to post quick, mini-blog thoughts and so the idea of uploading a huge post here in-between toilet training sessions made my head spin out a bit. And now it's December.

Speaking of potty training. . .

We are officially two years in.

I am still cleaning poop out of underwear.

The. End.

GOOD THING SHE'S SO CUTE 

. . .

Here is where I left you back in March of this year, when we were 16 months in.

I wish I had more of an update, but alas, there is none.

It's a two step forward, 10 step back kind of dance so to speak. She still has no access to her light-up toys until she successfully goes on the toilet. But, she seems to prefer her pants over the commode. Yay! She has one-two successes a week, and that is usually from one of us catching her in the act and running her to the toilet. This obviously requires eyes on her most of the time in order to catch the signs, which is, um, doable for a while but challenging long-term because #reallife.



I literally took this picture this morning after arising to the nice smell of my child's soiled room/pajamas. Praise the Lord for pull-ups (night = only time she wears one) and dance leotards.
Yes, the mask is upside down. Don't even care. It's a matter of get it on and get the job done. 

There may or may not have been one incident where I said, "Clara. First poop on potty, then light-up toys.' To which she replied by pulling my hand all the way from her room to the restroom and promptly pooping on the toilet. Ahem.

There may or may not have been another incident where she came walking out of her room with no clothes on. As in, completely naked from the waist down. I walked in her room to find her pants and underwear, completely clean, on one side of the room, and a pile of poop on the other side of her room. Clean underwear on the right. Pile of poop on the left. Okay then. (Jokes on you, Clara, because no longer are we helping you pull down your pants when needed, hahahaha.). 

PLEASE DO NOT BE FOOLED. SHE KNOWS WHAT SHE IS DOING.

My hopes and dreams for 2020?

Less Fabreeze. More Leap Frog Light-Up Dog on repeat. :)

(In all seriousness, thank you for all the love and prayers, friends! We appreciate you all so much!)

Friday, June 21, 2019

Cohen Syndrome Awareness Day 2019


Today is Cohen Syndrome Awareness Day!

You have never seen me post about CSAD on the blog? Well, I don't think I have. The date changes from year to year so. . . I typically forget. 


Did you know that less than 1,000 people in the the world are diagnosed with Cohen Syndrome?

Clara is the COOLEST kid. #duh There are challenges we face both now and in our future (I have had my share of meltdowns during #operationpoopgoesinthepotty), but we feel so lucky that God gave us Clara to parent, syndrome and all. If you click the link below to read more about Cohen Syndrome, you will read that a happy disposition is one of the clinical characteristics. How cool that God created her purposefully with a steady joy, one thing that He so deeply desires for all of us? We have so much to learn from this beautiful child and from ALL of the beautiful people with Cohen syndrome. #CohenSyndromeDay2019

Tuesday, March 5, 2019

Special Needs Potty Training . . . Take Two . . . 16 Months In

We've made it 16 months in our second go-round of potty training!


The day we took away Clara's pull-ups feels like an eternity ago. The last 16 months have felt long and hard, but like a lot of things, worth the work.

Click here to read the one year in update. 

When we left off at the one year mark, we had just finding collecting data on her bowel movement habits (lovely, right?), and had experimented with isolating ourselves to the restroom for three hours in the evenings in hopes to catch a a BM success, which proved ineffective.

Finally, on January 21, 2019, we pulled out the big guns.

I posted about it on Instagram here. Recap below in italics.

Well, today is the day. I’ve been avoiding this like the plague but after 14 months of cleaning up poopy pants I figure maybe I should take the advice of Clara’s BCBA and just do it.

See all these toys? Yeah. All of Clara’s favs. And they will disappear by the time she returns from school. 




Once she successfully poops in the potty she will have access to all of them for the remainder of the day. Then they disappear again until the next success. Repeat daily. Omgosh.

She is a cute but she is stubborn (14 months and she’s only had one poop success and ONE POOP ACCIDENT AT SCHOOL. Meaning, she doesn't poop in the toilet at school nor does she poop in her pants at school). She just loves saving it all for mommy and daddy. We feel so special. :-)

It’s not everyday someone asks you to pray for their child’s pooping habits, but if you feel so inclined ... 🙏🙏🙏. Day one! Here we go! #specialneeds #cohensyndrome#operationpoopgoesinthepotty

We are now a little over a month into this method of positive reinforcement, and while it isn't moving as fast as I would like, we are seeing slow signs of progress. The hard part is having eyes on her 24/7 to catch her signs of needing to have a BM. Additionally, if I miss the signs and she goes in her pants (which she likes to do the minute I leave her room/presence), it might be several days until the next BM, which lessens the opportunities to pair the behavior (poop in potty) with the reinforcers (light-up, musical toys). 

Camille is the BEST cheerleader around. 
So while it feels S-L-O-W and some days I want to poke my eyes out, I can't deny the success she has had over the last six weeks. She's pooped in the potty at school three times and three-four times at home. The excitement on her face when the toys come out (the second any poop hits the toilet water) is beyond precious! 

Not pictured, ALL THE TOYS ON HER BED. 


Slow and steady wins the race, right? Easier said than done, but that is what we are clinging to during this season on life. Put in the work now and eventually it will pay off. So we press on.

Praying that in four more months, at the next blog update, we have much continued success to report! 

This girl. Just can't get enough of her!


ALSO, here's a little laugh for you in case you need one on this Tuesday. Last week I was in that crazy hour of day called witching hour (yes, it is still a thing when your kids are 5 and 6), so I left Clara in her room to finish dinner prep. Brandon walks in the door five minutes later (mistake numero uno, left Clara in her room unattended for five minutes) so I ask him, "Hey, once you get changed can you go check on Clara?"

Several minutes later he's all, "Ummmmmm Britt. What is going on? Did you forget to come back and clean up all this poop on the floor?" And I'm all, "I know I am losing my mind and forget a lot of things, BUT DO YOU REALLY THINK I WOULD JUST WALK AWAY AND LEAVE POOP IN HER ROOM?" I turn the corner and he is standing there, dumbfounded, with Clara's pants, poop-streaked-underwear, and poop in his hands. 

Guys. 

She pooped her pants once I left her room and THEN SHE TOOK HER PANTS AND UNDERWEAR OFF ON HER OWN. 

There she stood, leaning over her bed, naked from waist down, playing happily with her favorite fidget toys. 

I can't even, you guys. 

So while this whole situation was gross (#understatement) and obviously not ideal, can we all just stop and cheer that this kid 1. is starting to recognize poop is gross and shouldn't stay in her pants and 2. knows how to pull off her pants!

That is all. 

Happy Tuesday! 
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