Sunday, March 27, 2016

Maceo's Fight: Finding His Voice

Maceo's fight has been a journey, he's five years old and just last year I was able to find a really great Speech Language Therapist, who confirm that he has Apraxia which I knew since he was two.

 Even though it has been a journey, Maceo has once again proven he is in charge. He is such a fighter, he is in speech therapy and we are in the the process of getting him an AAC device, he has a loaner and the first time he tried it out his eyes shine so bright, it made my soul so happy that he was happy he was able to communicate and get his point across.

Everyday is a struggle, but everyday is also so beautiful and we are both very blessed to have each other in this wild journey.


Cole's Fight: Cole Can Communicate

When my sweet boy was just 4 months old we went in for a well visit check and shots...nothing has been the same since. He was diagnosed with a condition call metopic craniosynostosis and at just 4 months old required major skull surgery involving brain exposure.

It was so very scary. 

  He healed like a champion, it wasn't until around 2 1/2 we began to see red flags in his speech development.  He was diagnosed with childhood apraxia of speech when he was 4 years old at our yearly team visits at the very same hospital he had his surgery. I was told he may never speak clearly, even after already being in speech therapy for one year without much progress. 

    Since that day, he has had intense therapy, 3 times a week. He was the 1st student in our district to use a AAC device in a general ed classroom and we have educated pretty much everyone we have met on what apraxia is and what to expect. Coles speech intelligibility has improved so much this last year, he amazes me daily. He was able to tell me he loved me this last year and even happy birthday to his brother. He will be 6 years old next month.  

It isn't easy, it isn't fun, but the love we hold for our babies gives us strength that will never be silenced!


We will knock out apraxia!

Thursday, March 17, 2016

Ashlynn's Fight: You brought your A-Game apraxia, but Ashlynn's game is stronger as we #knockoutapraxia everyday.

Hello apraxia.  Hello global apraxia.  It's hard to believe we've never talked, especially since I've certainly done my fair share of talking about you.  When I gazed into my new baby girl's eyes, and laughed along happily to her hearty giggles, I had no idea then that you were there, lurking in the shadows.

The day I discovered you were behind the delayed motor milestones and the lack of speech I cried heavy tears and felt a weight I don't think I quite have shaken yet.  You certainly brought your "A game" global apraxia.  I hate to admit I have felt defeated by you before.

However, you never managed to crush a small little girl's determination, attitude, resilience and perseverence.  We are told you will never go away.  Anything requiring a motor plan will always take



"more repetition than most."  

Oh how many times have we heard that?


I hated you once.  I hated watching my baby girl struggle to: speak, to jump, to ride her bike, to drink without choking. In fact I still hate you as I continue to see her struggle to: dress herself, feed herself, and write her name.  In fact, I don't think I'll ever quite forgive you when I think about the day she almost drowned.

Mostly though, I feel sorry for you.  You have no more power here in this house, because my little girl has shown she can beat you time and time again.  She is a hero who wins daily, weekly, and monthly battles, and that winning is something you will never know.  

Bet you didn't expect something so strong to come out of something so small did you?   

Well, we actually have that in common.  My daughter's bramightyvery took me by surprise too.

You will never know winning here, but because of your stubborness, we only grow stronger and more confident, knowing that any obstacle in our way can be defeated with faith, tenacity, and an unrelenting positive attitude as we continue to #knockoutapraxia everyday.  

Aria's Fight: Finding Aria's Voice

When Aria was diagnosed a very short 7 months ago, I honestly didn't know what to think.

I just felt an overwhelming sense of sadness, confusion, and worry.

I knew I had to do something. I knew we were going to have to fight every day. I knew it was going to mean countless hours of research, fun conversations with insurance companies, IEP meetings- oh and don't let me forget, therapy; and lots of it!

I also knew that this was one fight we would not lose.

In February of 2015 Aria started therapy. Aria could only verbally say "no". Every day since we started therapy Aria has been fighting. Now, a year after starting therapy Aria is already talking in small phrases. She laughs, plays and keeps up with her older brother! Oh, did I mention that she is THE best big sister!

Yes, Aria's diagnosis was huge.
Yes, it was hard.
Yes, some days it's still hard.
Does it defeat her? No.
Does it have her? No.
Why? 

Cause we #KnockOutApraxia every single day!!!

So take that Apraxia. Yes, you're big.
But, Arias fight and perseverance is bigger!

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.