Thursday, March 17, 2016

Addie's Fight: Giving Addie A Voice Before She Found Hers

Addie was born on February 1st, 2012 - and I met her four days later. 

Adoption is an absolute miracle. 

Addie had some birth and NICU complications and I, along with the other professionals (I consider myself one too - I am the Mama!) believe that Addie suffered an anoxic brain injury at some point which, we speculate, is why Addie struggles with Apraxia. 

As a baby Addie rarely babbled or cooed and I could go hours with my little girl, wide awake, playing, and making absolutely no sound. Her silence spoke louder than any words ever could.

Something was wrong.

We needed help.

Addie was diagnosed with a speech and language delay at age two but it would take another year and a half of speech therapy and neurology appointments to get the official diagnosis of Apraxia. 

Along with the diagnosis was the realization that Addie's receptive language skills were developmentally on target, if not advanced. We got our first real confirmation of this when Addie began preschool through our county school system and her teachers were seeing what we were seeing at home. It was also apparent that Addie was learning and picking up on everything in her environment because, well, she could sing anything. Not with words but if she heard a song a few times she could easily "da da da" her way through it perfectly. She has always loved music and we were lucky to have found a fantastic music class (Little Tots Music Together) and teacher, Ms. Teresa, who got us started off on the right foot when Addie was just 9 months old. Even today, using little songs to work on sounds or words has been a great tool.

 While all of this - Addie's intelligence and amazing receptive skills - was a great thing it was also the source of a lot of her frustration in therapy. That frustration in addition to her unease with anyone touching her face for PROMPT therapy (sensory and feeding issues here too!) was making traditional speech therapy not only difficult, but detrimental. And still, Addie was not saying a single word, not even mimicking sounds, at 3 1/2.

As much as I wanted to hear her voice, I wanted to GIVE her a voice even more.

I took a leap of faith and I pulled Addie out of speech therapy for the summer and we spent two months focused on assistive technology. I worked with an incredible team that included an SLP (Ms. Brittany) and a OT (Ms. Sarah) who was also an Assistive Technology Specialist. What we found that worked well for Addie was Proloquo2Go on an iPad mini. In only six weeks my little three year old was using her AAC to say 3-4 word sentences! Finally my smart little girl could show the world, in a way it could understand, just how smart she really is!

The unexpected benefit came when we started back into traditional speech therapy but this time Addie had her iPad as a "back up" when working on sounds or words became too hard or frustrating. Speech became a lot less stressful and much more productive. What would have caused a meltdown before was simply a matter of reminding Addie to use her "talk talk" if her mouth wasn't cooperating. Together with her AAC device and her emerging sounds it felt like we were finally getting somewhere. 

Our biggest breakthrough with Addie was actually a change in speech therapists. Our former therapists left the practice we were at and so we started at a new practice with an evaluation. In that evaluation alone Addie tolerated more PROMPT work, made more sounds, and was more on task than I had ever seen before. When I found out the SLP who did the evaluation had an opening, even though it was in the middle of my work day, I took it.

It's been four months of a mix of Kaufman cards, PROMPT, and modeling... One hour a week every week with Ms. Amanda and Addie, now age 4, went from two approximations to having more than fifteen approximations and five words! 

My favorite word? 


Mama, of course! 

The worries I had early on about Addie being accepted or making friends have long dissipated. Instead there are play dates with little girls who sing Frozen songs and little boys who snatch her favorite chicken toys... And texts and phone calls about how Addie's friends "can't stop asking when they get to play with her again". Typical kids, kids with special needs, older, younger... 

...one of my greatest joys has been witnessing the incredible friends Addie brings into our lives and seeing how she captivates them. She radiates love, strength, acceptance, joy, understanding... all the things this world needs more of. Our circle of family who we call friends and friends who are more like family has never been bigger or more supportive and I have her to thank for that.