2015 Apraxia Walk

This was our 4^th year joining the Apraxia Walk and Bryleigh’s last year as a superhero.  When our family started the apraxia journey 4 yrs ago, I did NOT think we would

a.     Get through it this quickly

b.    Meet amazing people during this journey

c.     Find an amazing group that has taught me so much

 Shortly after Bry was dx, I was worried about how she would progress.  My only example was our nephew Dallas.  He is now 21 yrs old and still has a speech impediment.  If he speaks too quickly, it’s hard to understand him.  I didn’t want this for Bryleigh!   I made sure to put her into intense therapy, she did 2 summers of speech camp and we constantly worked on speech at home. 
A cheer mom told me about NWO Apraxia Support shortly after Bry was dx.  We attended their second walk and I was grateful to the wonderful items she rec’d in her superhero bag!  Shortly after, I applied for & she rec’d an iPad from NWO Apraxia Support during their grant cycle.  She had a ton of speech apps and some games.  I worried she would only use it for fun.  Then one day, I walked into the family room and she was on the couch with one of the speech apps going.  It showed you how to use your mouth.  She was mimicking the person on the app.  My eyes immediately teared up! 
Her hard work paid off when she was released from speech shortly after her 5^th b/day!

About a year and a half ago, they amended their mission statement to include ‘invisible disabilities’ i.e. physical or mental challenge that is not always obvious to the onlooker, but can sometimes or always limit daily activities.  It can range from mild challenges to severe limitations and vary from person to person.  This includes, but is not limited to ADHD, anxiety, epilepsy, autism, Tourette syndrome, SPD, non-specific learning disabilities, dyslexia, CAS and other speech and language disorders. 

We applied for and rec’d a therapy grant for Cadence.  It was a huge help for her speech therapy at BG.  Woo! 

The 2014 walk was the first time Cadence was a superhero.  She thought it was pretty neat, except the part about going on stage to receive her medal.  She gets anxious about attention being on her, alone.  But she did it, so I was proud of her for that. 
This year’s walk was at the Toledo Zoo.  This was the first time the venue changed since it started 5 yrs ago.  It was amazing!!  The SWAT team came in, dressed as superheroes and repelled down one of the walk ways.  The kids loved it.  Their superhero bags were out of this world.  I was absolutely shocked when we went through them after getting home.  They were filled to the top with amazing items!

This baby penguin loved Bryleigh

My friends & I donated art supplies for this basket.  Funds raised were donated to Shared Lives Studio

Each child gets a superhero prize.  Cadence rec’d a watch that I can set up reminders.  So at different times during the day, it will vibrate and remind her to pay attention, at lunch it’s set up to remind her to wipe her face while eating.  Other reminders are to ‘take a breath’, ‘use manners’, ‘give a compliment’, ‘use fidget’, use ‘chew necklace, not shirt’.  It’s an amazing piece of equipment!  Bryleigh rec’d Tiggly.  She LOVES it!

After I worked the raffle ticket table, my mom, the girls & I walked around the zoo for a little bit.  We finally headed back for the raffle drawing for an iPad mini.

Cadence won!!!  She was soooo happy!  She could not wait to get home and play on it. It has been an amazing tool for her as well.  She has a vision therapy app, spelling word apps, reading comprehension apps…all in the form of games and she loves them. 

I will sing praises to NWO Apraxia whenever anyone will listen!  They are truly amazing.

 

 

You know it's Friday when...

Friday means double therapy day...we have it scheduled so Cai's 2nd day of therapy is on Bry's...saving time on driving to BG is all that matters!  I am able to watch the therapies in the observation room.  I prefer to watch both girls, which means 2 tv's.  Since there are only 4 tvs total, if there are a lot of people there, I'll only watch on 1 tv and flip back and forth.  I don't think there are enough words to sign them the praises they deserve!  They are doing such awesome things with my kiddos!  Bryleigh's speech is 90% intelligible and Cadence is getting A's & B's in school.  I'm so proud of them and am beyond thankful for the therapists they work with, both at BG & at their schools.  They have helped my Bry's speech & Cai's reading tremendously!

 

 

 

 

 

 

 

 

Shake it for a Good Cause!!

In September, the biggest fundraisers of theyear for the Apraxia support group …it’s insanity and fun and raises TONS of money!  YAY!  On 2/1, the Apraxia group had a new fundraiser…a Zumbathon!  It was a BLAST!!  I volunteered, and still felt the energy and excitement form all the participants as they were shaking it for the cause!

 

 

 

It was a lot of fun & even better, Sarah kindly volunteered to help me at the registration table! I can’t wait to see how big it is next year!!

We have been beyond blessed to have found this group..I can't say enough nice things about the members...apraxia may suck - but it's an awesome feeling to know there is this amazing support group out there!

Childhood Apraxia of Speech

When Bryleigh was 18 mos, I noticed she wasn’t saying any words and would make sounds instead of words.  For instance, Love You was hmm hmm.  Cadence was fafa and so on.   I mentioned it at her appt and the dr told me not to worry – some kids just develop later.  I’m aware of that..Cadence was in speech therapy from 18 mos to 2 1/2 yrs old.  This was different. 

Dennis’ nephews all have CAS.  The oldest is 17 and still has problems being understood.  I worry about the girls b/c I don’t want them to have to struggle like he does.

It was hard for us too.  At home she would get so mad that we didn’t understand what she was saying that she would start throwing tantrums or cry herself to sleep from frustration.  It broke our hearts into a million pieces.  Something so simple that she wanted us to know and she couldn’t even share it.

Her face tells us so many things, but her little voice doesn’t.  I was praying for the moment when she would tell me she loved me.  [Im]Patiently waiting for her to be able to play with other kids w/o the other kids asking what she was saying or looking at her like she was speaking another language.  I want so desperately for her to have a friends that understand her.

At Bry’s 2 yr appt, I again voiced my concern.  This time she agreed and wrote us up for a speech eval.  Our insurance is A-MAZ-ING, however, it doesn’t cover speech therapy.  It will cover speech evaluations. But, those sneaky bastards, only approved a speech therapist in Brighton, MI..more than an hour from our house.  Considering the price of speech evals, it was worth it to go up there for her eval.

The evaluation was 2 hrs long…after, I met w/the therapists and was told that she was apraxic.  Even though I was fully expecting them to tell me this, I was still saddened by the diagnosis.  To top it off, our insurance wouldn’t cover therapy and I didn’t want her to not be able to speak properly b/c we couldn’t afford to pay for therapy.

I contacted Help Me Grow, they did another eval and we were set up with family resource funds to help pay for Bry’s therapy.  We could do private therapy OR we could take her to one of the universities and use their therapy.  It’s MUCH less expensive b/c it’s being done by grad students.  Since we only get $1,000/year, it will last longer at the university.  This is the route we’ve chosen. 

Shortly after her diagnosis, I was told about a support group.  We participated in their 2nd annual walk and I started attending the meetings.  They had a grant offering IPads for the kiddos.  I applied for Bryleigh and guess what – she got it!!!

She’s only had it a week or so – but it’s amazing.  One app, in particular, is doing a lot for her.  It shows the mouth close up and how it moves.  She loves playing w/the ipad.  She plays games as well as using the speech apps. 

Listening to the improvement in her speech just amazes me!  This girl is a trooper!!

As we continue on our Apraxia journey, I’m thankful for my supportive family and friends, for the wonderful support group I belong to…but especially thankful for my little girl – Apraxia may have crippled her voice for now – but her personality speaks volumes!

Thanks to NWO Apraxia Support for Bryleigh’s IPad grant application!

Playing w/her IPad is exhausting