Wednesday, May 4, 2016

Clara 4 Years

This kid turned four years old on Monday and truly, the thought it blowing my mind. How in the world have four years past before my eyes? I know, super cliche, but it is so very true.

I love waking the girls up on their birthday and taking a picture of their cute little sleeping selves, and also right after they are up. . .


"Wake up hair" is a real thing in this house. . .
See what I mean. . . Her hair is on point . . . 

Pure JOY. . .

A few things about Clara at age four years:
  • She loves to swing outside, cuddle her big teddy bear in her room, play on mommy and daddy's bed, play on the iPad, and enjoys any toy that makes music and lights up.
  • Her favorite foods include bananas, any type of berries, clementines, grapes, spaghetti, chicken nuggets, and of course, she would drink only milk forever and be perfectly content. Mommy is trying to get her to love water, but so far it isn't happening. 
  • She attends full time therapy school, Monday - Friday, 8:30am-3pm. She gets private speech therapy once a week (goes a bit late to school on that day). Clara has intensive eye tests every 6 months and a basic eye check up (dilation to check for retinal dystrophy) every 3-4 months. 
  • She is working on so many skills at school - gross motor (walking up/down stairs) and fine motor (using a fork, spoon etc), imitation, responding to her name, responding to basic directives, recognition of family members, language expression and comprehension (via PECS) and as you know, potty training as of last week. Our biggest prayer for Clara is that God would open her mouth to speak words. 
  • She is 35 pounds and I don't even know how many inches tall but goodness, she is growing like a weed! 
  • She truly is pure joy. There is just no better word to describe this kid. She is my constant reminder that life throws us struggles and hardships, but that doesn't mean we have to throw ourselves a never ending pity party. Life is hard but life is beautiful. Clara reminds me daily that there is always much to celebrate, even in the hard. 


Potty practice . . . (she sleeps in Brandon's childhood baseball jerseys . . . so adorable)

She is starting to give her own version of a hug. This has taken years of practice. Melts my heart.

Happy 4th birthday, kiddo. You're simply the best! Excited to see where God takes you this year.

Saturday, April 30, 2016

Special Needs Potty Training . . . Week 1 Update

As most of you know, we embarked on potty training with Clara this past Monday. We are now a solid five days in thing thing. School is using a researched, evidenced based method for potty training kids with Autism and/or a similar diagnosis. A method that takes time, but that is proven successful if followed consistently. Patience is the name of the game, and I know this is true whether training a special needs or typical child. :)


Here's the breakdown of week 1. . . 

Day 1/Monday:
  • Started day at level 1
  • 4 accidents, 0 successes
  • She doesn't seem to care being wet, and sometimes urinates when she gets excited. She moved from Level 1 to 2, but that is when most accidents occurred.
Day 2/Tuesday:
  • Started day at level 1
  • 4 accidents (school actually didn't give me number so going on previous day's total) , 0 successes
  • She seems to urinate right after she gets off the potty so tomorrow they will increase her time on potty from 10 minutes to 15-20 minutes (then off for 5), to see if they can catch a success
Day 3/Wednesday:
  • Started day at level 1 (well, technically not level one since scheduled sit is upped to 15-20 minutes)
  • Several accidents, 1 success!! (Urinated while sitting on toilet!)
  • She is no longer given access to a moderately preferred reinforcer while on the toilet. And stays in the bathroom during the 5 minutes off the toilet. After the one success, she got lots of praise, access to her highly preferred reinforcer (iPad) and was taken out to swing on the playground. Then back to the restroom for another scheduled sit. After one scheduled sit she got off the toilet and immediately began to urinate. Her teacher put her right back on to finish on the toilet and Clara clenched and stopped once back on. Smart cookie. :-)
Day 4/Thursday:
  • Started at level 1 (20 minute sit, 5 minutes off, no access to reinforcer while sitting)
  • 1 accident, no successes (Due to another appt, she was only at school for about 3 hrs this day)
Day 5/Friday:

  • Started at level 1
  • 2 accidents, 2 successes!! Woohoo! 

Her BCBA came home with us Friday for a little while to train us in the weekend protocol. We will work from level 1, except are only required to do 10 minute sits followed by 5 minutes off, not the 20 minute sits they are doing at school. She is allowed access to moderately preferred items while on the toilet (only if she needs a distraction to keep her on) and while off the potty. Her favorite things/activities (iPad or certain light up toys, going out to swing, cuddling the bear in her room, playing on our bed) will only be used to reinforce success.


She had two accidents at home Friday evening and no success, but we are hoping and praying for a great day today! (Note - She had a 30 min sit post dinner, since she drank a ton with her meal and we were hoping to catch a success. After that sit we were done for the day.)



Before each scheduled sit we prompt her with a picture of the potty from her PECS book. She is required to pull off picture, hand to us, then we walk to the restroom.

If you need us, there is a 99.9 % chance we are right here. . . 

Can she even pee like this??? Love her! 






Stay tuned! Or not, maybe just unsubscribe for a while . . . lots of potty talk in the near future . . . 

Friday, April 22, 2016

Special Needs Potty Training

Here we are, friends. The time has come. We cannot put it off any longer. While every bone in my body wants to resist, resist I cannot.

Clara starts intensive potty training on Monday. 

I am typically a go-getter in this whole special needs thing. I have never been one to shy away from a challenge as it relates to Clara's care. Occupational therapy three times a week at age 7 months? Sure thing. I'm all over it. Full time school at age 2.5 years to get her the type of therapy she needs to thrive? Totally. Hours upon hours of research and trial and error for just the everyday, little things that go on behind the scenes, behind these closed doors? Check. Tests upon tests and multiple "labels" to get her the type of services she needs? Yes please. Endless conversations and moments of advocacy with insurance to, for the love, provide an adequate allocation of yearly therapy sessions, because we all know thirty ain't going to cut it for a child who has never said a word. Done and done. The glass is half full is typically my default approach.

But you guys, this next thing, this daunting task of POTTY TRAINING . . . I just want to run and hide in my closet with a spoon and pint of Ben and Jerry's Chocolate Therapy and some type of sappy playlist on my iPhone and never emerge. For real. But since Brandon says I can't do that . . .

The underwear has been bought . . .

The endless pairs of shorts are packed (there is more than this) . . .

And the protocol reviewed . . . (We originally were starting on a Friday, not a Monday, thus days of the week on this protocol will shift a little. Also, since Clara does not speak at all, we will most likely train her with a picture of a toilet that will eventually be part of her PECS book.)




So this is what we need, friends. . .

Prayers: Please join us in prayer as we head into Monday and as these weeks go on. Specifically that Clara will learn quickly (we've been told not to expect too much progress at all the first week) and that despite her compromised intellectual functioning and lack of spoken language, she will somehow come to understand the process and come up with her own way of telling us when she needs to use the potty. Please also pray for me and Brandon, that God will grant us with peace and wisdom and patience and stamina and a positive attitude even if progress proves extremly slow.

Tips: If there are any special needs parents out there reading this that have tips on what worked/did not work for your child when potty training, please share! Even parents of typical kiddos, we are all ears, and while the specifics of our situation are different, there is still wisdom to be gained from those that have gone before us.

So here goes nothing . . .

T-minus three days until it's bye bye diapers for our almost four year old (that's a whole different sob fest)! While I am anxious, I am beyond grateful to her school who is taking the lead and holding our hand every step of the way. (They will even come home with us one day next week to show us the ropes.)

(And yes, she will still wear a diaper at night or on long car trips/plane rides, etc.)

Sure do love this girl!! Even if she is about to cover me in pee . . .

Wednesday, April 13, 2016

Bye Bye Courtshire Lane

This little house has been so good to us . . .


It's a crazy thing to leave your first home . . those early newlywed days . . . the early baby days . . . lots of bittersweet emotion . . . lots of memories . . . but many more memories to come. . .

I may or may not have cried when we drove out of the driveway the last time. Brandon was so sweet to remind me, "Britt, you cried when we left our 800 sq. ft. apartment and you grew to love our first home. You will love our second." It's true. So maybe I get emotional. . . what can I say? And it wouldn't be proper documentation without a selfie so . . .


So long perfect, little house on Courtshire Lane! We loved our eight years with you!

Now, time to unpack another box . . .

Thursday, April 7, 2016

The Way They Love

This past Monday, Chance's birthday, hit me like a ton of bricks. I was not expecting so much emotion to pour out of my heart and my eyes but man, it sure did. It started on Sunday at church and continued through most of the day Monday. I guess I figured that since I have come so far in my grief journey, this milestone day would not veer too far off of my "new normal." Wrong.

But y'all showed up big and strong and in ways for which I am eternally grateful. Thank you for taking time out of your busy moments and caring. Jesus in the flesh is what you are - your texts, emails, blog comments, acts of service, gifts . . . so very touching.

Thank you for loving us so hard and so well.
. . .

After I took Clara to school Monday, I came home to this outside my kitchen window. Balloons and a card on Chance's tree. . .




Baby blue flowers, a sweet card, and our fav - Chick-fil-a chocolate chip cookies. . .

Beautiful sunflowers. . .

Delicious brownies (with chocolate chips!!) . . . Love the balloons at the bottom of the note and the "Choose joy" at the top. . . 

My sweet friend, Jenna, texted me this picture and I about lost my mind. To see our friends kids visiting our son is one of the best gifts . . . touches me to my core. . . 

Little trucks and a thoughtful note. . .

Beautiful flowers on his grave. . .

We made a visit on Monday at approximately 5:00pm, right around the time Chance was born last year. All decked out in blue, of course. We attempted a family selfie, but this is about as good as it gets. I love these pictures so much, though. . .


We brought balloons to release. Blue for Chance and other little boys who have gone to heaven, and a pink for a sweet daughter/mommy who died of cancer last year. My parents gave us the other two balloons and I love the words . . . Our God is an awesome God and Thinking of you, today, tomorrow and forever. . .




I felt a sense of sweet relief after our visit. There is something about being there, as a family, that just brings deep peace to my soul. God is so generous in His gift of peace, no? Sometimes we just have to push through the yuck and the pain to discover it again.

Thank you, each and every one of you, for the way you love.

Monday, April 4, 2016

Dear Chance. . . One Year In Heaven

Dear Chance,

How has it been one full year? One year ago today you were born into my arms, yet you were already being held by our Heavenly Father.

This past year has been a rollercoaster for mommy with lots of downs and lots of ups and lots of twists and turns I didn't expect, and some I did. But while I have been on my grief rollercoaster, one thing that brings me much comfort is knowing you are experiencing pure peace and love, for there are no emotional rollercoasters in heaven. Only deep joy because you are in the presence of Jesus. You bypassed all of earth's yuck and instead went straight to forever bliss. So when I think of you experiencing only joy and only peace and only a continual awe for our Savior, I rest easier in this in-between. I rest easier knowing all you know is perfect love.


I will never forget those sacred hours after your birth. For five hours you were with us. I studied your face intently, wanting to remember every detail. Your nose, lips, hands, toes . . . every inch of you was beautiful and perfect. A picture of you sits on the dresser in mommy and daddy's bedroom. So while you are not here experiencing life with the four of us, you live on in our hearts and minds. I get to see you everyday, for now just in a picture, but someday soon we will meet again.

I am filled with joy knowing that in the short twenty weeks in my womb, you fulfilled your life's purpose. Some of us walk around this earth for years upon years not fulfilling God's call on our lives. Brushing Him off in the name of busyness or various other earthly distractions. How amazing that you accomplished God's purposes for you in only five months. You have inspired me to step up and perservere and not shrink back (Hebrews 10: 35-38). You have instilled in me a constant reminder of Jesus and of the true reason I was put on this earth to begin with. . . to shine Jesus to the world. Because that is what you do. Because when I think of you I think of Jesus and the real point in all of this . . . to make His name known among His people.


Chance, I just love you so much it hurts. Your birthday is proving much harder than I anticipated, but even in the pain I am filled with hope and truth and I can smile through the tears because God is faithful. Do I wish you were here in my arms? Of course, and I always will. That is just the mommy in me missing her baby boy. But do I trust God's ways over my own? Do I trust that He who formed the world and cares for the birds of the air even more so cares for me and my best? Of course, and I always will.

We celebrate you today, sweet little one. We celebrate heaven today. And we celebrate the promise that God is big and mighty and always working for our good. The tears are present, but we are choosing joy. Get ready, there are lots of blue balloons coming your way.



Love you forever and always,
Mommy

Saturday, April 2, 2016

Weekend Links 4/2/16

Camille is out of town visiting her cousins in the Dallas area, so this girl is an only child this weekend. I think it's safe to say she isn't hating it. . . Also, her bed head is on point.


A few links for reading this weekend. . .

Life
My House: A War Zone
The Metaphor in the Front Yard 
Even Still, We are Bold 
The Most Powerful Thing You Can Say To Another Mom
Choose Vulnerability 
Poop and Glory 
Rice Krispies: My Spiritual Awakening - Truth.
If You Bring The Happy, Your Day Will Be Beautiful

Loss
Do Not Sit in the Darkness for too Long

And in honor of Clara's dual diagnosis of Autism (along with her Cohen Syndrome) I can't fail to mention that today is World Autism Awareness Day! I've got my blue on today! For more information click here. #lightitupblue

Have a great weekend! Special post for a special little boy coming on Monday.

Tuesday, March 29, 2016

Easter 2016

We enjoyed a family filled Easter weekend. Clara had school on Good Friday but the rest of us spent the morning together (playing outside, eating hash browns - Camille's choice of course), and then headed to Clara's school that afternoon for their egg hunt/Easter party. We were five minutes late (thank you very much highway 59 traffic) and thus missed the entire hunt. I was so sad to miss it but we still were able to socialize with some other parents and watch the kids play and eat way too much candy. I didn't snap any pics, so you better believe I snapped plenty from our church's Big Bunny Party on Saturday.

I so appreciate that our church opens the party an hour early for special needs kids and their families! This makes Clara's experience (and thus ours) a million times more pleasant. Events like this can be very overwhelming for Clara and kids with similar sensory struggles, so a lighter crowd and less noise is game changer!

Clara wasn't quite as into it this year as she was last year for whatever reason, but she did have fun riding in the wagon and bouncing a bit in the bounce house. And another bonus? We got to see our sweet friends the Christoffs. Their daughter, Katherine, also has Cohen Syndrome and we just love getting together with them when we can (which isn't often enough!). Camille had a blast asking to play every single game and then crying when it was her turn. :) She hit up the petting zoo like a champ until a baby pig squealed in her face. . . so there's that. You can imagine how that went down.

































 Our Cohen's girls. . . trying to avoid the picture opp. . . :)



















Saturday evening the girls in my First Family (aka small group) got together for pedicures and dinner. After our annual night out we always question,  "Why do we not do this more often???" The coolest part? Someone surprised us (still no idea if it was another table or the restaurant) and paid for our ENTIRE TABLE. I still have chills thinking about it. Talk about being inspired to pay it forward. . . 


It was a great weekend filled with family and friends and reflecting on the power and promise of our eternal Savior. While I am thankful for egg hunts and a little pampering and a free meal, I am even more grateful for the gift of Jesus and the life and death He CHOSE for me. And you. Praise Him.