Monday, August 3, 2015
Click here for Part 1.
The Goal: FUNCTIONAL Communication
Because of the gap between what Addie knew (receptive) and could demonstrate she knew (expressive) we needed to find the bridge. I had hoped it would be speech therapy, and then maybe ASL, but finally it was time to pursue something different.
Augmentative and Alternative Communication (AAC) is something I was very resistant to. I didn't want to stop trying to get her to talk, to focus my time and my money towards therapy that trained her to use a device to talk for her. It felt like a sign of defeat, it felt like admitting my daughter wasn't going to be able to verbally communicate.
|Addie checking out her private SLPs iPad for the first time.|
I asked Addie's school team to do an AT evaluation. I initially requested an iPad but was told she was "too advanced" for an iPad. So we were provided with an Accent Tablet with Unity software.
This is where I want to remind every single parent your job is to take everything you learn from other professionals, parents, etc. and run it through your mom filter and YOU make the final call. In this instance I sort of "gave in" and went with the County AT specialists recommendation. I mean, heck, they told me my kid was "too smart" for what I thought was best for her so, sure I listened! The result? We had a device that just didn't fit us. We also had a situation where no one was really responsible for training Addie on how to use this new device. She saw no value in it because no one was teaching her that it had value.
It was also big and clunky and hard to use and it was just not practical for an active and very social three year old.
|Addie's Accent Tablet weighed about 8 pounds and, from my perspective, she just wasn't "getting" it's purpose.|
Around the same time I was fortunate enough to be working with two incredible women, one of whom is an OT and AT Specialist and the other is an SLP. Together they make up a really dynamic program called The Department of Assistive and Rehabilitative Technology - I'll call them the "DART Girls". Together they helped me see that it was time to get Addie communicating. My thought process shifted and I finally saw AAC for what it was - Addie's opportunity to have words until she was able to produce them herself. AAC was not me admitting defeat, it was simply a different road to journey down to reach our goal of functional communication. So, together with the DART Girls, we reviewed a lot of research, looked at our options, and dove right in.
The Goal: Addie will be Proficient with her AAC Device
I will be the first to admit that the initial AAC fail with the Accent Tablet was, in part, because I hated the damn thing. And so when Addie refused to use it at home and couldn't locate a single button on it when asked by her private therapist in multiple sessions... I was Over. It.
Luckily Addie's father had an iPad mini he wasn't using, couple that with a swipe of my credit card for the $300 Proloquo2Go software and we were up and running! Why Proloquo2Go? Addie needed something that could start very basic to simply teach her why this thing was important. Addie also needed something that could easily be made more advanced as she got the hang of it. I was looking for something that I could update and program on my own so we weren't relying on a weekly therapy appointment to enter a new word. I also know that it's the same software used in Addie's preschool classroom by her teacher. The DART Girls trained me on the software and then we set it up with a 16 cell grid and started letting Addie get familiar with it. This whole process took so many hours for the DART Girls and myself, it was exhausting. But, at the end of it, we had something we felt would be perfect for Addie to get started with. The cute pink case and purse strap were also a must...
It's only been about a month and Addie started "formally" working with the DART Girls just last week, so she will be seeing them twice a week, every week. We do a lot of "sabotaging the environment" which helps her see the value in her "TalkTalk" as we call it. And the results have been incredible and further prove that Addie is one smart little girl who just needed "help" to find her way of communicating with the world.
Addie still has private speech therapy focused on making verbalizations once a week in addition to working with DART privately twice a week to focus on her AAC. It's a big time and financial commitment but when I see the results and see my girl thriving... it's beyond worth it.
I am so grateful I fought for what my gut told me was best for Addie. I am also thankful for her team, particularly the DART Girls, who made it happen. She LOVES her sessions where she learns to use her TalkTalk and she has DOUBLED her grid size which basically means she doubled her language skills. It is both humbling and breathtakingly beautiful to watch her thrive with this AAC device and the right support from her team of professionals.
I no longer guess at what she wants, we don't end up in a meltdown on a playdate when she can't tell her friend she'd like a turn... She comes to me and requests what she wants to eat, drink, play with, where she wants to go...
...this is such big stuff for my tiny little girl who's overcome so much in just three years.
I want to go on and on, but why bother?
I'll let Addie show you what she's been up to...
...my little chip stealer!
The Goal: Communication.
Addie has chosen, and truly it was her choice, to use the iPad with Proloquo2Go to communicate. She also chooses sign language when it's more efficient and while she's still learning on her iPad. She is still in speech therapy and working on her verbalizations and I still hope, one day, her brain will allow her to be able to use her mouth to communicate. Until then we will continue with private sessions to help her (and me) learn to use her TalkTalk proficiently and continue to expand the language on her device as she progresses developmentally.
But it is with the most grateful heart I can say Addie will never be without a way to functionally communicate...
...and that is a beautiful thing.
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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"...
...to 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.
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.
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...
...you 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...
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