The Goal: AAC and Apraxia Part 1

Thursday, July 30, 2015

The Goal: Figure Out What's Wrong

Although pretty much everyone thought I was crazy, I had Addie evaluated by a private speech therapist at 16 months old because she didn't make any sounds, not even typical baby babbling. I did this amidst a slew of "she will talk when she's ready", "she's not even two yet!", "you are paranoid because you're a social worker" and "my brother-in-law's cousin twice removed didn't talk until he was three and he's just fine" comments. No matter what anyone said it didn't ease the ache in my heart when I'd hold my little girl close, look in her sweet blue eyes, and watch her smile and try her best to interact... with no sound. Addie's silence spoke louder than the voices telling me not to worry.  And, low and behold, when she was evaluated by her speech therapist she was testing at the 3-6 month range for her expressive communication.

The "why" remains somewhat of a mystery. MRI's showed only slow myelination, she's had cranial ultrasounds, etc... nothing clearly shows up. In a lot of ways Addie doesn't make a ton of medical sense, particularly when it comes to her massive cataracts that appeared overnight at 18 months old and her continued respiratory issues. One thing everyone agrees on is that, for some reason, Addie's brain didn't develop properly and/or was injured at some point either in utero or shortly after birth. 

So she started receiving private speech therapy twice a week. She was in Early Intervention but I was told she couldn't be diagnosed as having a speech delay until she was 2.5 years old - early intervention my ass. They did, however provide us with an OT who forced Addie to touch bananas and vomit... but I digress...

PROMPT speech therapy came later, when Addie was two and a half and still had no words, although she was increasing her sounds. PROMPT has been shown to be very successful with children who have Apraxia because it is a "hands on" approach where the therapist (and trained parent) actually touch the child's face to manually guide their mouth/jaw/lips into the movements necessary to produce the sound or word. At this point Addie had still not received the official Apraxia diagnosis, I was just "that mom" that figured it out before the doctors did. And although Addie does have some oral defensiveness (feeding issues) and some sensory concerns she tolerated the therapy well once we got the right therapist who connected with her. 

The Goal: Addie Will Speak 

All I wanted was for my little girl to look at me and hear her call me "Mama". Not randomly babble "mamamamama" and pretend it meant something. I wanted verbal words coming out of my child's mouth. I wanted the world to see what I knew was true; that Addie is a smart little girl that is very close to being cognitively typical to her peers. Because, lets face it, society assumes you are not intelligent if you can't communicate verbally.

Society sucks sometimes. 

When Addie started Preschool with our county this past fall my long standing theory on how smart Addie really is was affirmed by her teachers who were seeing what I was seeing.

I then did some research and asked for a very specific test to be done by Addie's private speech therapist, The Preschool Language Scale. This test showed that Addie's receptive language skills were nearly developmentally on track while her expressive language skills were severely impaired. Again, further proof that Addie's cognitive skills are close to typical and it's *only* her severe expressive communication deficit that is holding her back. I was also able to use this testing and an evaluation with her neurologist to finally get the diagnosis of Apraxia. 

The Goal: Understanding Addie

ASL was something she seemed to be picking up on so we slowly expanded her signs and this was helpful for those of us who learned sign along with her to understand her better. She was exposed to sign very early but never picked up on it until closer to age 3. Her signs for "eat", "drink", "help", and "sleep" all came in handy, as did her most beloved sign "fish" for when she wanted goldfish crackers. The limitation of ASL for us has always been that the majority of people do not know ASL and it created barriers with peers and with caregivers who were not ASL proficient. 

Addie signing "play" when she was SO over her school picture day.

Around this same time Addie was beginning to get very frustrated with any type of speech therapy that was geared towards her learning to produce verbal sounds. Meltdowns were increasing because she was trying hard to be understood without success. And to make matters worse I was letting my mind spiral into imagining a world where Addie would never be able to communicate effectively and what that would mean for her, and for me. 

It was not pretty. 

Thankfully, before I lost it, Addie decided to help me finally get it.

It was a lazy Sunday morning after a sweet wake-up cuddle session when I decided we weren't getting out of bed until she said "Mama". Because she CAN produce that sound, she does it multiple times a day. And she certainly knows who her Mama is! So I used PROMPT, I bargained, I was sweet, I was stern... I did everything I could think of... for fifteen minutes.

Finally she looked at me, tears streaming down her face, and she signed "help" and "mama". 

And I sobbed. 

And in that moment so much became clear. Addie is a smart little girl and if she could use her mouth to talk, she would. She absolutely would. She is so determined and feisty she wouldn't let anything keep her from it. Her brain is simply not allowing her to use words... yet. 

So my new goal was to do what Addie had asked me to do that morning, my goal was to "help"... help her be able to tell me, and the world, what she wanted to, but what her brain wouldn't allow her mouth to tell us. 

And so we started on the journey to our new goal...

Part 2 coming Monday.


1 Comment »


Wednesday, July 8, 2015

I can't even tell you how overjoyed I am for my 30th year!

It has taken me every bit of 30 years on this earth to get to a place where I am finally confident, independent, content, vibrant, and completely in love with my life and the people I share it with. 

Through all the ups and downs I've become the mom I have always wanted to be. I've watched Addie and I grow and thrive and learn over the past year and it's been hard work but so beautiful. I've learned to let go of my fears for her future and just be in the moment. I have had the opportunity to advocate for her and make sure she is getting all the support she needs in school and in therapy. And, most importantly, nothing holds us back anymore. No more excuses, this is our life, and we are going to dive right in and figure it out.

I found the person I always knew I was, the one I fought to become over the past year. I take chances, let go, get messy, make mistakes, love like crazy, and never stop trying to be more me today than I was yesterday. I love knowing this person... this funny, caring, independent, wild, genuine, loving person.

I fell in love. The kind that is effortless but makes you try harder every day to be a better person. The kind where you don't have questions because your heart already has the answers. Where you know it all, you've seen the dark side, and you don't run away, you run right to each other. It's been an incredible journey and I feel like the luckiest girl in the world to be loved so well and to have the opportunity to love him right back.

I am surrounded by more friends and family than I could have ever hoped for. People who show up, support, love, forgive, and make an effort to just be a part of my life. To have friends and family who have stood by my side through every up and down over the years is truly remarkable. I've also watched my circle of friends grow and include some incredible new people. To be thirty and make new friends that I know will be in my life indefinitely feels like such a gift and one I don't take for granted.

I have absolutely no doubt that 30 is going to be a beautiful year and I am honestly looking forward to sharing the journey with you.

Add a comment »

Walls & Broken Pieces

Monday, July 6, 2015

As my dreams become reality and my days are filled with love and joy I start to question if it's all real, if I could possibly have found a safe place for my heart after so much hurt. 

And on this one particular night the negativity and lies that swirled in my mind met head on with the truth of the life I am blessed to live now. 

Fear met reality. 

I was ready to do battle in that moment. 

I was ready to bloody my bare hands building the wall back up. The one I constructed to be sure I never got caught believing, trusting, planning, dreaming...

...or maybe I'd just knock the whole damn thing down. Maybe I'd destroy it and let it crumble around me and let the world in to see all the pieces that had been broken before. 

But when I showed up ready to tackle the wall... had a hand in assembling every brick. You had put up that wall so carefully with me and left room for every window I needed to see out and every door I might need to walk through. You kept me safe, but you left me with my freedom. 

And then I stood inside and looked to find the scattered pieces I try so hard to hold onto by myself and I couldn't...

...because I was all put back together and any pieces left behind had been carefully gathered up and you held on to them lovingly in the pockets of your khaki cargo shorts.

In the middle of the battle that was raging in my mind you were right there, holding my hands. 

And on that Saturday night, on the rough stone steps, the war was finally over. 

My heart finally know that it was...

...thankfully... last... 

Add a comment »

...and it was in that moment...

Thursday, June 25, 2015

...her future was straight ahead. 

Add a comment »

You Can't Tell Someone They Love You

Thursday, June 18, 2015

I've had a beautiful, happy, and by all accounts charmed life from the moment I was born. I have never wanted for anything, and I have been blessed with incredible people and experiences in my life. 

Somehow though I found myself spending a lot of time striving to be happy... begging, clawing, fighting, for the things I thought I needed to be happy.

It was a perfect storm of a weakness inside myself mixed with some less than ideal circumstances. And in the midst of the pain and the confusion of it all I stopped trying.  I stopped trying to find ways to make someone love me, want me, choose me.


I focused on me, on my daughter, and my family, I did the hard work.

You know the kind...

...the raw, painful, re-opening of every wound kind of work. 

The kind where you openly invite and seek out others to toss their little piece of salt right on in. 

The cut wide open, exposed, let's get this shit figured out down to the last little bit of crap so that it never comes back again. And add in the realizations that come from all the hard work... sucked. 

And I caught myself a few times...

And here. 


...I found some pretty amazing things out about myself along the way and found my independence which I now thrive on. I realized that I have everything within myself and I don't need to seek it out from another person or in another situation. 

I don't need anyone for my happiness. 

But on my goodness...

...good people with great intentions, who show up, are authentic, love me to bits, surprise the heck out of me every day, make me a priority, and make me laugh like a fool on a regular basis...

...certainly add to my happiness. 

Nope - you can't tell someone that they love you. But when someone tells you and - even more importantly - SHOWS you that they love you...'s kind of the best thing ever. 

Add a comment »