Our Apraxia Story

My first daughter, Paige, was born with no major problems.  She was born at 38 weeks & only 5lbs 8oz.  She was incredibly tiny, but healthy.  We were thrilled!

As she got a bit older we noticed her eye lid's didn't seem to work normally & her actual eye opening was extra small.  After 3 surgeries on her eyes between the ages of 11 months & 15 months, her eyes were corrected as much as possible for the time being.  Before her surgeries, she was starting to say a couple of words... words only I could understand, but they were there.  After her surgeries, she stopped saying those words.  It was really odd to us.  Right around the time we were realizing this was a concern of ours, a study came out that basically said kids under the age of 2 that have more than 1 surgery are more likely to have speech problems down the road.  
My mommy gut told me that we needed to get some professional help.  I asked around to see what my options were & the main one that came up was Early Intervention.  I contacted a few until I found our local Early Intervention program & scheduled an appointment.  They came to my house & did the evaluation.  We started working with them, & they were great.  Paige was improving (slowly, but we were thrilled with each hurdle nonetheless).  At every doctor appointment, Paige's speech was a concern, which would then lead us to another doctor appointment with another specialist.  I think in that year we went to doctor appointments on average 3 times a month.  It was a journey. 

After about a year of working with them, one of Paige's speech therapist mentioned that Paige might have something called Apraxia.  Honestly, I had no idea what that meant & it went in one ear and out the other.  Seriously, she said it & I heard it, but I didn't register it.
One Sunday evening (a moment I will never forget), we were all in the car on our way home from Rick's grandma's house.  Earlier that day, Paige had learned how to say "Ma Ma"... I was so excited.  At 19 months she finally could say what every mom wants to hear!  Needless to say, it was a great day.  As we were driving home that night, we talked about what we were going to do to get ready for bed when we got home.  Paige then said... or rather, tried to say, "ba ba" (for bottle), but it came out as "ma ma".  It was evident what she was trying to say, but she couldn't say her "b" sounds all of a sudden.  She looked confused & tried over and over to say it.  She started to cry because she knew this was something she had worked so hard on mastering & that she could say it before.  At that moment I knew there was more to her "speech delay" than just the anesthesia she had  over a year earlier.  My husband worked with Paige to calm her down while I turned around & cried.  I didn't want her to see me crying, I needed to be strong for her, but at that moment I wasn't.  I just wanted to pull over, scoop her up & hug her while we both cried.  Just typing out this moment still makes me cry.   
The next morning I was still emotional about it, which gave me my mamma bear fire.  I was going to find out what is really wrong with Paige's speech & what we could do to help her,  I was on a mission for my baby.  I searched online, but didn't find anything.  I left messages for her speech therapist & her pediatrician first thing in the morning to see if they could point me in the right direction.  By lunch time they had both called me & they both mentioned that word again... Apraxia.  It wasn't just a word any more.  This time it meant more.  Not that I wasn't worried about Paige before, but I just didn't understand it the first time, I guess.  My mission was progressing, I looked online for anything I could find for Apraxia & I spoke more with her speech therapist at our next appointment.    
I was told that Apraxia usually cannot be officially diagnosed until the child is 3 years old & at that time Paige was 2.  Our Early Intervention speech therapist suggested we get a second opinion from a private speech therapist.  After lots of research, I found a speech therapist very close to us who specialized in Apraxia & she pre-diagnosed Paige with it.  Basically saying if she was old enough, she would be diagnosed with it, but since she wasn't quite there yet, we'll say she has about a 95% chance of having it.  it's amazing that after searching for about 12 long months, we finally found something that fit.  Something that, even though it's not easy, it's right & we had a direction to go now.  

It took Paige 6 long months & countless hours of practicing before she could say the "b" sound again, and even to this day she still struggles with it more often than not.
Just the other day Paige was officially diagnosed with Apraxia (since she is 3 now) & Dyspraxia.  The more I learn about Apraxia, the more confident I am of this diagnosis for Paige. But also, the more I learn about Apraxia & with each day that passes, the more I realize how serious Apraxia is.  
Paige on the first ever Apraxia Awareness Day
Childhood Apraxia of Speech (CAS) is considered a neurological speech disorder (or sometimes a motor planning disorder) that affects the child's ability to clearly and correctly produce syllables and words.  The most obvious thing that others notice is that the child has significantly limited and/or unclear speech.  (source)
Apraxia is something that affects our daily lives.  Although I can usually understand what Paige is trying to say (by picking out a word or two of her explanations), it takes a lot of energy to listen so intently to her all day long, and no doubt it takes much more energy on her part to try to coordinate her brain & what she wants to say with her mouth.  Most people have a much harder time understanding her, of course.  Sometimes I don't know if I should be happy or sad for her because she's come so far & done so well, but she still has such a long way to go.  
Paige is amazing, though!  She has been very patient with herself & with others through this whole process.  She has also worked so much harder than I would ever expect a 3 year old to work on something, especially something that seems as simple as speech.  She's always been positive about it & rarely gets frustrated.
Paige at Hippotherapy (speech therapy on horses)

Even though Paige is in speech therapy, I do my best to have little mini speech therapy sessions between the two of us so she can have that extra little boost of help.  All of our sweet kids (of all abilities) have so much they want to say to us, so that's why I am starting Let's Talk Tuesdays, so we can have give our kids every opportunity possible for them to have the tools they need to express themselves.  As parents we can make the biggest impact for our kids, so it's important for us to make every effort possible to encourage our kids.  
  For more information about Apraxia, click here.
To donate towards Paige's therapy, click here.
This post was originally posted here

I'd LOVE to hear your about speech journey.  Comment with them below or email me at [email protected]

1 comment:

  1. Via Instagram. First visit here because of the apraxia posts, I have an almost 5 year old who has made great progress in speech but I wonder if she has a mild case of apraxia. I'm interested in your talk Tuesdays.


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