Tuesday, October 11, 2011


this last week has been hard....apraxia and sensory integration disorder have given us a run for our money. kinley is currently working on the sound "f". it is hard... it is VERY hard. with kinley's apraxia the motor planning it takes to move her teeth out..her lip in.... and then blow all while holding her lip in place. let me tell you is not easy! but we are trying...VERY hard to beat this sound. i know it will come..but some days it really just stinks. we also had a rough day at dance class...her teacher was less then kind when i tried to explain kinley's disability and why she was struggling. the response " yeah i figured something was wrong with her"....was hurtful. this week satan used this to FLOOD worry...fear...doubt into our world. the questions about education, kinley's future and much more took over my world and i felt sad, angry and alone..

my amazing husband came home with some verses for us to find TRUTH in this.

"For I know the plans I have for you , declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." jeremiah 29:11
"do not be anxious about anything, but in every situation,by prayer and petition, with thanksgiving,present your requests to God" philippians 4:6

mark and i sat...prayed and talked...we decided that instead of being anxious and letting the fear of kinley's future weigh us down ...we would let it challenge us. we will turn to God first when we start to feel overwhelmed and make God a center part of this journey. we also will continue to research, invest, and participate in ANYTHING we can do to help kinley.

i spent alot of time online looking into new ideas on kids with apraxia and sensory integration disorder. we heard over and over how an i pad is amazing for kids with these disorders. my amazing husband who had been saving a stash of money for something else decided that he wanted to use it for kinley. he took kinley to the apple store last night and got her an i pad. i love how gracious and loving that guy is! today we started using it in our daily speech exercises...let me tell ya kinley LOVES IT!

i am hoping to be part of a pilot program for kids with apraxia to stay up on current applications on what would be best for her.

kinley has been using these flash cards and her "functional word book", but to be honest she is starting to get bored with it.

so i am going to start working on a "virtual " word book that i hope she will be more excited about!

please continue to pray for kinley. the older she gets the harder this disability gets. she is doing GREAT she has learned SOO MANY WORDS and is communicating a lot more! we are SO THANKFUL for this! pray for protection for her as this world is often not a nice place or very accommodating for kids with disabilities.

this sweet joyful girl is an amazing gift mark and i have been given and we feel so blessed that God chose us to be her parents!


Clark Family said...

You are one amazing Mama and your little Kinley is a treasure! I LOVE reading about all the things that the Lord is doing in your heart and in your life. He's got you close and has clearly given you eyes to see what He sees. Love the vulnerable posts the most. :)

Praying with you sweet friend! Can't wait to catch up with you in person soon. :)

Keely said...

I'm excited to hear about the iPad! I was reading further on CASANA and highly doubt we'll get one through their program, so we might be making a trip to the Apple store ourselves as well :-) I just have to say that I am so with you on the hurtful comments. I get so full of anxiety with Matthew sometimes, and he went to VBS at our church this summer and the music was so loud and he does not handle loud noises well and it was all I could do to keep from crying when everyone felt the need to tell me that he sat with his ears plugged or cried or whatever. I want so badly for him to be "normal" but I am slowly starting to learn that our normal is going to be different and that's ok :-) People are always going to say things to me about his size or his abilities or whatever, but I have control over whether I let it affect me or not. I'm still in the "letting it affect me" stage but I'm working on that. Hmmm, this comment probably didn't make a lot of sense but I just wanted to say I love reading your updates and I'm struggling with a lot of the issues as well. Keep updating on the iPad!

Anonymous said...

Love you all and my daily prayers are for words for Kinley! !

Brooke said...

Unlike your other, clearly kinder, posters, I'd like to just point out that I'm NOT going to mention what I'd really like to say to Kinley's dance teacher, though I'd really like to. How's that for a confusing sentence?

You guys are great. :)

Have you been to Starfall.com before? Not sure if Kinley would like it or benefit, but Ellis and a few other kids I know can get a bit addicted.

And also, I'm not usually awake this early. So there's my disclaimer. :) xo

Mary Clare Tarpley said...

So glad that God brought us together. I have tons of apps to recommend to you, especially with book making. Pictello is awesome for making books and you can even record the reading of the book in your voice. Also, the Speech EZ app is wonderful and is so much easier than flashcards. It is pricey, but worth every penny because of the variety it offers, number of cards and data collection. Hope you are on facebook. Look for me there at Unlocking Luke's Voice and Mommy Square~My Life As Mother and Wife. We also started a charitable fund for others at The Olive You Foundation, also on facebook. We also have websites for them www.unlockinglukesvoice.com and www.oliveyoufoundation.org as well as our blog at www.maggieandluke.blogspot.com

Check out more videos of Luke on youtube. I post under mommysquare ;)

My email is maryctarpley@yahoo.com
I would love to chat with you about Kinley and Luke.