Tuesday, July 9, 2013

Grace Ivy


This little lady has been the main topic of many conversation, tears, and worry over the past few months at our house.  I have honestly been quite overwhelmed with being a mommy to Grace and my other two that I haven’t had a lot of time for pictures or blogging.  I wanted to sit down and write some updates on our little Gracie girl. 

I have actually waivered back and forth about writing about Grace in the past few months.  It almost felt like I shouldn’t be sharing my concerns about her in such a public place.  I have always thought about the blog as a “letter to my children.”  I hope to look back on it and remember the fun events from their childhood, the little moments that made our days so wonderful together.  This little blip with Grace has become a bigger deal than I thought, and it is a part of our story right now.  I also feel it is important to share all of me and all of motherhood.  The road of mothering is long and full of twists and turns.  Things can be breezy and then the winds can change.  We all will worry over our children at one point or another.  They all are going to need help in certain areas, encouragement to learn new things, this is part of being a mommy to little ones.

Some of the worries about Grace have also felt too ‘raw’ to share.  I know some of my most avid readers (aka my family) would probably begin to really worry if I spilled my guts about the concerns I have for her, the exhaustion she causes on a daily basis, and my tremendous struggle I have felt to parent her in the past 6 to 9 months. 

Since the end of May and throughout June we have been to a series of doctor’s appointments and therapy evaluations.  With each visit I am hoping that we are closer and closer to understanding just what Gracie’s needs are and able to help her as quickly as possible.  We have had a hearing screening (which she passed), an eye screening (which she passed), and speech evaluation and two visits from Early Intervention.  Through the speech evaluation we realized that Grace has a speech delay, but the wonderful speech therapist also clued me into Gracie’s constant need for sensory input.  She noticed things that I thought were just “toddler behavior” or little quirks about Grace that might be clues to something else that is going on with her. 

Early Intervention also noticed her need for sensory input and she qualified for services through their program.  We are going to begin Occupational Therapy weekly as well as Speech Therapy weekly with Grace.  We have already started speech in June and Grace has had a huge breakthrough with words.  At 19 months she really only used two words daily, “Dada” and “This,” and a lot of signs to get what she needed throughout the day.  Now she has 15 words and more signs.  She seems to be pulling from a larger pool of words in her daily life.  All of this is good.  There has been tremendous improvement in just this past month. 

We haven’t begun Occupational Therapy, but I have been trying a lot of things at home from suggestions from our Speech Therapist.   If you are wondering just what all of this “sensory input” means, good, because I was wondering too!  Of course I love sensory play, and I do it often with my children.  I have always known from my Early Childhood Education background how important sensory play is for preschoolers and even my first graders.  But, after doing lots of reading and research I finally understand the benefits of sensory play.  My good friend Brandi is a pediatric occupational therapist and gave me lots of good reading to do.  This was one of the best definitions I found about sensory processing:

“The sensory processing involves the brain’s ability to organize and make sense of different kinds of sensation entering the brain at the same time.  Sensory processing underlies the development of all motor and social skills and the ability to learn and perform complex adaptive behaviors.  Sensory processing happens in the brain stem.  The brainstem contains an important filtering system which prioritizes incoming information to determine if it should be noticed or disregarded.  This filtering process is frequently a problem for individuals who have disordered sensory processing.” 

Wow.  It shows just how important sensory processing is in our development and ability to perform complex tasks (such as speech).


One of our main concerns has been Grace’s need to body rock at night to fall asleep.  She will rock back and forth on all fours while bumping her head against the bumper of the crib.  It is similar to the way babies rock when they are going to start crawling.  We will go through weeks when the rocking is minimal and then we will have some bad stretches when the rocking will last over an hour before she falls asleep.  I have been beside myself with the body rocking.  After doing a lot of online research (SCARY!) I found a few chat rooms with some parent information on night time rocking.  Many of the parents used a weighted blanket for sleeping.  I need to take a picture of the beautiful weighted blanket that my Mom made Gracie (coming soon)!  She made it over a month ago for her and it has worked wonders.  The information I found online said the blanket should be roughly 10% of the child’s body weight plus one pound.  So, my mom found a tutorial, got all of the materials, and got to work! 

The first week we gave it to her we called it the Miracle Blanket.  I completely eliminated the rocking for seven straight days.  It was the first time Grace hadn’t rocked herself to sleep in over 10 to 12 months.  It was amazing!  She was sleeping over 13 hours at night and taking over 3 hour naps during the day.  She was happier, less fussy, talking more, calmer, more organized (falling less, tripping over her feet less), it was like a complete 180 turnaround.  Then on day 7 the rocking started again.  It has happened a lot, LOT less than before, and I can usually go in an stop the rocking and get her calmed down with the blanket’s help.  She still has amazing nights and horrible nights.  But, our weekly outcome is much better and she loves the blanket.  It is really heavy (it almost weighs 5 lbs.), so I have her lay down first in her crib.  Then I tell her, “Now, you get your blanket…” as I cover her up from shoulder to feet with it, she giggles!  She is so excited to lay with it.  My mom even made her a smaller blanket for riding in the car or sitting down.  It is a lap size and she loves that one too!

I have been trying to do things throughout the day to give Grace opportunities to fill up her sensory needs.  It is also called providing a ‘sensory diet.’

We have been doing lots of tactile sensory play.  I do this A LOT with my big two, but usually Grace can only participate for a small amount of time because she puts so much stuff in her mouth still.  I have been trying out lots of new play dough recipes that are safe for babies such as peanut butter play dough…



It was actually really yummy, and she loved playing with it!  So did Bradley and Ellie…



We also “painted” with pudding, yogurt, and Jello.  I even stripped down the girls and let them play with chocolate pudding in the bathtub.  They LOVED it!!  It was a huge mess, but easy to clean up with the hand held shower.  I have been pinning items right and left that are baby friendly for sensory play.  My goal has been to do two activities a week with her, next up is cornstarch and water body painting, and painting with Cool Whip (Yummm!)

We bought Grace a mini trampoline.  It is a new favorite activity in our house!  She actually said “No” for the first time while jumping on the trampoline.  From what I have learned, when children’s sensory needs are being met they are then more able to learn new words!  She kept jumping and biting on the handle, and I kept saying, No Mouth, to get her not to bite the handrail guard.  She started repeating me and saying No over and over again while jumping.  She loves to sit on the trampoline too.  You will often now find her with a pile of books up on the trampoline reading away.


Some of the other sensory items we have purchased are a:

Sit and Spin, remember those from when you were a kid?

A cuddle hanging swing from Ikea, we have it hanging in the basement and it is a hit with the whole family as well

Some teething sticks, to get the pacifier out of her mouth so she can talk more freely while still getting oral input

In my heart I know that she will get through this with our help.  I am her biggest advocate, fan, cheerleader, teacher, supporter, and researcher.  I love you Gracie Girl.  That pretty sums up my summer so far, lots of sensory play for Grace, lots of worrying in between, oh and some fun bucket list items for the big kiddos!


amanda said...

you ARE her biggest advocate, fan, cheerleader, teacher, supporter and researcher...and she knows it mama!!

lots and lots of love coming your way friend :)

Honduras Girl said...

Clare -

I love that you share. No out with your love and devotion to see your daughter and your family through difficult times, you will come through this with so much strength to embrace life's subsequent challenges. Each child is different, unique, and beautiful - it makes the works such a rich and diverse place. Imagine years from NW how you will be able to share these stories with your kids as they will eventually face their own challenges with your grand kids.

Hang in there momma - you are obviously doing a fabulous job!

Stephanie Leedom

Jentifur said...

Clare, I think it is amazing that you share the good times with the difficult. As a mom-to-be sometime in the far off future it is good to see both sides. I will add your family to my prayers to continue to work through this challenge. You are an amazing Mom! I wish we lived closer so when we do have kids they could go to your school :)

Colleen said...

Hugs Clare - I know this is so hard as I struggle with my worry over Emily's learning issues. It's hard to know what to share or not but I often feel better when I talk about it. You are the best advocate for Gracie and she is so lucky to have you!

Courtney said...

You are amazing for all that you are doing for your children. I know as educators, it is sometimes hard for us to admit that something may be wrong. I am anxious to continue hearing all that you are doing and it how it is helping her. I know it is hard to share personal things but it may also help you connect with others with support and guidance. Praying for continued progress and answers. Also praying for your other children as this affects them too.

Jenny said...

Clare...you are such an amazing mom and by sharing this, you are helping so many. It sounds like you are doing everything you can and that she is making strides!

Eli was on a roll talking when we first moved here and then he stopped. Not sure if it was the move, or not being in our own environment. We are still working on it and are waiting on getting some extra help as well.

But, you definitely encouraged me to do more sensory activities with him, in hopes he might start talking more. Thanks!

amy said...

Clare, this is so wonderful. You are clearly Gracie girl's biggest supporter and you should be proud of all that you have done so far. Thank you for sharing; I have been thinking of you. xo

laura said...

i second amanda. YOU are her biggest advocate, fan, cheerleader, teacher, supporter and researcher. you will find answers you are looking for.

one thing i remember my sister-in-law doing with my nephew, who has a sensory processing disorder -- massage. and i know you have done that with all your babies. she would gentley squeeze my nephew's arms and legs. that simple pressure would really calm him down and relax him when he was having an episode...

thinking of you, my friend!

Lindsay said...

You know how much I thought she had improved since the last time I saw her! I loved hearing her words and seeing her big Gracie smiles! So glad you guys are able to do so much for her! Love you! Love Gracie!