Monday, May 23, 2016

Special Needs Potty Training . . . Week 4

Potty training is moving right along. I am amazed at how well Clara is adapting and learning and maturing through this process. Here's the rundown for week four.

Day 22/Monday:
  • When I picked Clara up I was told she had no accidents and no successes, so I'm not sure how that happened. It is possible that that information was lost in translation (Clara has several staff working with her throughout the day, so sometimes the staff who brings her to the car only knows what happened during their specific shift). 
Day 23/Tuesday:
  • One accident and several successes at school
  • 5 min on, 45 off
  • No successes at home
Day 24/Wednesday:
  • One accident and three successes at school
  • 5 min on, 45 off
  • No successes at home
Day 25/Thursday:
  • No accidents at school and 2 successes
  • 2 successes at home!
  • 5 min on, 45 off 
Day 26/Friday:
  • No accidents at school and 4 successes. She manded for the potty on her own and went (pulled her PECS card appropriately)!!
  • 5 min on, 45 off
Day 27/Saturday:

  • No accidents and no successes at home. She is in a diaper between sits, thus the reason for no accidents. School told us they will let us know once she has proved she can be in underwear in the interim. 
  • Side note: I'm finding it quite hard to dedicate time to training on a typical weekend (typical meaning - without completely blocking off all day to work on it - which means being able to keep her in underwear between sits). Really need to step it up on the weekends. Camille was sick this weekend (vomiting, fever, croup like cough), which also put a damper on training. 

Day 28//Sunday:

  • No accidents and no successes at home. 
  • See above side note!

A big thanks to everyone for following along as we embarked on this (life-long) journey and for all the encouraging comments, text messages, emails, etc. We have learned from other parents of children with Cohen Syndrome that potty training for our special kids isn't ever fully mastered, but we are thankful and hopeful for all the progress made thus far, and for all the progress that awaits our precious Clara. Please keep lifting her up in prayer. We are beyond blessed to have such a village in our corner. 

Also, you can rest easy knowing I won't be posting about pee again, at least for a long while. 

Make it a joy-filled Monday! 

Monday, May 16, 2016

Special Needs Potty Training . . . Week 3 Update

Here's how week three went down. Day by day, Clara is making strides and blowing us away. We still have a long way to go, but we are very thankful for God's provision and guidance.

In all of this though, where I am attempting to focus my mind is in this . . . God is so good regardless of the outcome. He is good and faithful even if this potty training thing all goes south and never rebounds. He is good at being God and works for our best, even when prayers go unanswered. He is good regardless of if my daughter is in diapers for another year or another 30 years. It is when I focus here that positivity and proper perspective remains.

Day 15/Monday:
  • No accidents at school and 5 successes!
  • She is now on a 5 min on, 15 off schedule . . . Hallelujah. 
Day 16/Tuesday:
  • No accidents at school and several successes 
Day 17/ Wednesday:
  • No accidents at school and several successes 
  • The BEST PART . . . Twice, on her own and completely unprompted, she flipped through her PECS book and chose the picture of the toilet. The teacher was shocked because she typically will pick a picture of whatever toy she wants to play with. The first time she selected the toilet the teacher sat her on and she didn't go. A little bit later she did the same thing, teacher sat her on, and SHE WENT! This is a huge accomplishment and win for our girl and I am so very proud and thankful. Praise God! 
Day 18/ Thursday:
  • One accident and school, several successes 
  • Used her PECS toilet card AGAIN and went potty!!
  • She is on a 5 min on, 45 min off schedule
Day 19-21/Friday - Sunday:
  • We traveled to Ft. Worth to visit my grandma, who resides in an assisted living facility. We put Clara on the potty maybe three times all weekend. Since the training is still intense, and since we can't take our eyes off of her during "off" times, it wasn't logical to force the issue while cooped up in my grandma's tiny room.
  • So no accidents and no successes over the weekend. :-)

To Be Continued . . . 

Wednesday, May 11, 2016

You Hem Me In

I was reading from the book of Psalm the other morning and a verse that I have most likely read many times, made me pause. It was as if God was speaking audibly to me and saying "Stop! Right there, precious daughter. Look close. Read that line again. There is so much truth right there and so much meaning for you. This is the redemption story I speak of for my children."

You hem me in behind and before, and you lay your hand upon me. Psalm 139:5

You hem me in. 

There is so much powerful truth in that line, friends. Can we sit there for just a moment? Jesus is the bookends of my story, of your story. He goes before and comes behind and doesn't ask us to journey alone. His hand is over all of it.

You hem me in. 

The parts of our story that we don't wish to ever relive? That we don't wish upon our worst enemy? The parts that hurt and make us cry and keep us awake and night and sometimes make us feel like a crazy person has taken over our brain? Jesus is before those parts and He promises to follow up. He doesn't leave us hanging. He doesn't walk away when life gets messy.

You hem me in.

There is so much comfort and hope and peace and even joy in sitting here and letting this truth run deep. But we have to let it run deep. We have to believe it, friends. Until we believe this promise as truth we are opening the door for a life of anger and bitterness and ugliness and despair. Because life is really hard.

You hem me in.

But I don't want the anger or bitterness. I want the hope and peace and the joy. So to get to that place I have to believe that God is a God of goodness and love. I have to believe this, regardless of whatever unfortunate circumstance I might be facing this day. Because God's goodness and faithfulness are not, in any way, tied to my circumstances. That is a lie from the evil one. Circumstances are always changing and shifting but God is not. His goodness is never up for question. God is always working, and He is always steady and always constant.

You hem me in. 

Jesus walks before and walks behind and it is only Him that fills the gap. Only His hand can fill the dark places. It is only Jesus who can make miracles from our mess.

You hem me in.

I write these words with tear filled eyes, not out of sadness, but out of complete amazement and wonder of this promise.

So may you feel His love today. May you feel His presence and His hope. May the joy come. And may you believe that He does indeed hem you in. . . even in the midst of the very thing that is making you hurt. And may you feel His mighty hand holding tightly to yours.

Tuesday, May 10, 2016

Special Needs Potty Training. . . Week 2 Update

Clara is rocking right along in potty training. She is doing so well, better than I could have ever  expected. God truly is listening to and answering our prayers. There have been several days of no accidents at school, and even several instances of success at home. So proud of our hardworking girl!

I will likely track her progress here for the first month, for my own documentation purposes (sorry!), so feel free to just click "Mark as Read" on your blog feed. . . because surely this is not interesting to anyone but me.

Day 6/Saturday:
  • Started the day at level one - first full day of in home potty training! 
  • 3 accidents, 0 successes
Day 7/Sunday:
  • Started the day at level one - second full day of in home potty training
  • 2 accidents in the morning and 2 successes in the afternoon!! 
Day 8/Monday:
  • Level one - back at school 
  • 0 accidents and 1 success!
Day 9/Tuesday:
  • Level one
  • NO ACCIDENTS AND THREE SUCCESSES! I about fell on the floor when her teachers told me this at pick up. 
Day 10/Wednesday:
  • She graduated to ten minutes on followed by ten off because. . . 
  • She had NO accidents at school and FIVE successes! I pretty much started crying my eyes out when her teachers came running to the car to tell me after school. 
Day 11/Thursday:
  • Three accidents and three successes at school. One success at home!
Day 12/Friday:

  • No accidents and EIGHT successes at school! (They count anything that makes it into the toilet, even if it is a dribble.)
  • Still at a ten min scheduled sit followed by 10 min off. 

Day 13/Saturday: 
  • No accidents and two successes at home. We only actively worked on potty training for about 4 hours of the day.
Day 14/Sunday:
  • Zero potty work this day. We were traveling around town for Mother's Day get togethers and the day did not allow for focused potty time. :-)

She continues to wear pull ups during car rides, meals, etc, and wears an overnight diaper to bed. 

Apparently Ms. Camille has been paying close attention. She came out of Clara's room like this recently and could. not. stop. laughing. She is such a little ham. I must say I am impressed that she got the panties on correctly, without my help. 

To Be Continued. . . 

Sunday, May 8, 2016

For the woman who needs some extra encouragement on this Mother's Day . . .

Missing your baby on Mother's Day
To the Miscarriage Mamas on Mother's Day - "Dear miscarriage mamas, this Mother’s Day, I pray that you honor it as you need. That might mean hiding under the covers, tear streaked. It might mean putting on a pretty face at church or a family gathering, and screaming in the shower later in the day. It might mean accepting sweet misspelled cards made by tiny fingers, and still giving yourself permission to feel that pinch of grief mingled with great joy. It might mean visiting a grave site. Mother’s Day is about celebrating life and life givers. I think for us, the miscarriage mamas, who hold this day with interweaving and complicated emotions, we have a piercing reminder that today we can also celebrate the ultimate life giver – the one who ravaged death and will someday make all the sad things come untrue."
5 Things to Remember This Mother's Day
Sweet child's video to all mother's who have experienced pregnancy loss

Missing your mama on Mother's Day
When You Still Need Your Mom and She's Not There Anymore

Extra encouragement for moms on Mother's Day
For the Mom Who Doesn't Feel Good Enough

Mother's Day is always a bitter sweet day for me. Losing a mom at a young age and losing a son to stillbirth makes this day feel, well, a bit different. Much like the first article, it is a day that might always mix great joy with a pinch of grief. So my prayer for all of us today is this . . . Whether you are a woman who longs for a child, a woman who has recently lost a child or a mama,  or a woman who feels abundantly blessed but a bit lost with a house full of littles, may you turn your ears to Him on this day, this Mother's Day. May you get still and feel His presence and let it pierce deep. He is there, waiting for you. He is ready to bless you with His gentle whispers. Even today. On Mother's Day. Blessings to you all.

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 3 feet 4 inches tall (57%) and 36 pounds (62%). 
  • 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.