Some days are harder than others

Sydney.
She's made so many improvements. So much progress and for what she has--so much progress in a short 6 months.
But she has far to go. Sometimes people hear her and they think we're done or some switch was flipped and now she's fine.
She's beautiful and happy and amazing.
But she has a long ways to go.
And she didn't get where she is without enormous amounts of effort. It's hard and so much work.
And some days, like this day, she just doesn't feel like doing it.

100%!!!!!!!!!!

Sydney's speech teacher, Tammy gave me a progress report for her. They have been working so hard and look at all these vowel sounds Sydney is saying now with 100% accuracy. A few of them she couldn't say at all a couple months ago. It's so amazing seeing all her progress. We are so grateful for Tammy and all her help and support.

Proloquo2go

So, this girl has made so much progress. So much. But so much progress is being able to say most of her vowel sounds and a couple new words. This Apraxia stuff is rough and takes a l-o-n-g time to get to where we need to be.
So, we've been told by a couple of therapist that we need an ipad and this app- Proloquo2go for Sydney when she goes to school. But both of those things are costly. The app alone is $300. I'm a FREE app kind of a girl, so yes, this freaked me out.
I looked into Walmart grants, but couldn't find the personal section. Walmart gives all kinds of grants every year especially for education. But I could only find the ones for organizations. So, one day while shopping I saw Ryan Corbett, the general manager of our Walmart, he's in our ward. I asked him about the grants and where I could find the one I needed. I told him, I can't find the ones for just personal. I could only find group ones. He told me they didn't have personal grants, only ones for organizations. Then he told me he'd call me later and tell me more.
Later that night, I had forgotten he even said he would call and he showed up on my doorstep, and ipad mini in his hand.
Amazing.
So much kindness.
So, our Walmart donated the ipad.
We decided to plunge right in. She needs this. It will be her voice at school. But she has to learn how to use it and I don't want that to be on the first day of kindergarten.
It was on sale so we got it for $264 :)
And now we're just learning how to use it.
It's pretty amazing. We can personalize buttons, so we have a button for each family member and I've made a prayer folder with most of the words she'd need to say a prayer. She taps the buttons and then it reads the sentence for her. We even have a little girl's voice as the speaker.
I think this is going to work really well for her.

At the Doctor

I took Sydney to a developmental doctor that my pediatrician suggested. It was mostly to confirm her diagnoses of Apraxia and see if there were any other underlying issues we needed to be aware of.  

Dr. Sampson-Fang started by asking several questions and then with a test, asking Sydney to draw a circle. Sydney drew a person. Haha. And the test was over. Haha. There are no other issues, just the speech and she did confirm the diagnoses. 

She talked about pop-words, which Sydney has had a few of. When the brain is relaxed, but stimulated, she could have a pop-word come out. She explained it as a tunnel that lights up and then goes dark again. And Sydney's had this happen a few times. A year and a half ago we were at my in-laws and she rode a horse for the first time. She was very excited and she said the word horse probably ten times. We left and she sobbed "horse! horse!" But she's never said the word again since. The doctor said, the tunnel was lit, but went dark again and her brain can't tell her lips, teeth and tongue what to do to be able to say it.

She said Apraxia is like teaching someone who isn't athletic to play a sport well. She said, for most of us speaking is a natural ability, it's not for Sydney. She can learn to do it and the few words and sounds she makes are encouraging that she will, but it doesn't come natural for her. Like the sport. She will have to work, to train, daily to be able to gain the skills to speak.

I understand all of that. I know it isn't dreadful news. I know she can make it. She can do it. She's a strong girl--and a strong willed girl! God has blessed her with gifts that I already see how they will strengthen her and and help her through this. They will mold her into the beautiful person she's meant to be.

I just need to remember that when her swim teacher is asking all the kids their names and skips over her--knowing she can't say it, making her cry. 

I need to remember that when other kids are asking why she doesn't talk or why she says things weird. 

I need to remember that when we're both having melt downs because I can't understand what she wants/needs.

Her new SPL said to me: It's hard, it isn't easy, but it's doable. 

She can do this.

We all can.

(Breath, Repeat, Pray) :)

Cookies

We didn't really know what to do for apraxia awareness day... we hadn't known very long that that's what our girl has. So, we made some blue cookies, since Sydney loves to bake.

My favorite part of Apraxia awareness day was when Sydney woke up and I told her what it was and that we were going to wear blue today. She said "No." and signed "pink". 

I said, "Oh, don't you want to wear blue? Mommy is."

"No. Pink."

"Daddy's wearing blue."

"No. Pink."

"Brothers are too."

"No. Pink."

Since the girl changes her outfit several times a day, she did wear pink... and blue... and a few other colors as well. :)

I'm glad she's got such a strong will.

Apraxia Awareness Day

Our friends, our family, our neighbors... so many of them wore blue to today to support girl.