August 20, 2013

Let's Talk Tuesday - Our Apraxia Story


'Let's Talk Tuesday' is a bi-weekly post series with ideas on how you can help your child of any ability, but especially those with Apraxia, Autism, speech disorders or late talkers.  These are meant to be simple ways to encourage speech.  I am not a speech therapist, but I am a mom of an Apraxic child, I am just sharing these ideas in hopes that they will help someone else.  
If you have a story or an idea that you would like to share, please email me at michelle@trustmeimamom.com.
Welcome to our first Let's Talk Tuesday!  In the future on our Let's Talk Tuesday Series, I'll post different ideas on tips you can do with your child (of any ability) at home to encourage speech & language development.  Today though, I thought a good place to start (with our first LTT post) would be to share our story of Apraxia with you.  It may not seem like much, but to us it's been an emotional journey & one that is close to our hearts.  

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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.  
First_Apraxia_Awareness_Day_2013_Girl
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.
Hippotherapy_Horse_Speech_Therapy_Girl
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.

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This post was linked up here and here.

I'd LOVE to hear your speech journey or speech tips that have worked with your kids.  Comment with them below or email me at michelle@trustmeimamom.com
*This post may contain affiliate links.  What that means is that I will get a small percentage of what you purchase through the link.  This will in no way charge you more money... in fact, I love to save money so I usually post links that are the best deals possible.  I am only an affiliate for companies I personally use and recommend, so I know you will be in good hands.  All money earned through my affiliate links or donations will go to my daughter's speech therapy.  

17 comments:

  1. I haven't had any experience in this area other than through teaching, but I loved reading your story and can't wait to learn more. I appreciate you filling me in on something that I knew nothing about. My oldest has no speech problems...but that's not to say that my 5 month old will not.

    PS She is a cutie!

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    1. I love your comment, thank you! You are so sweet. Teachers often have some great tips, so if you ever think of any, I'd love to feature you & your tip! :)

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  2. I did have a small amount of experience with teaching speech therapy in my at home childcare. We had a young boy with autism and it was one of our main focuses :D

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    1. That's so great! If you're interested I'd be happy to feature you & some tips on a blog post... just shoot me an email & we'll get it going!

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  3. Thank you for posting this information. By doing speech therapy and reiterating it at home at such a young age, you are definitely helping Paige for her future! I see so many kids in the education field whose parents fail to admit they have a problem, and it hurts them in the long run. Great job, mom!

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    1. Thanks for your sweet comment... I didn't realize you were a teacher, Jen! If you ever want me to feature some of your tips, just shoot me an email! :)

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  4. Hi! It is nice to connect with you, Paige is a beauty! Speech therapy can really work wonders for kids with apraxia. There's a bunch of blogs out there written by speech therapists with good tips, maybe you've already Googled? A lot have Pinterest boards, too.

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    1. I've seen a couple, but I haven't gone searching on google or pinterest specifically for that yet... thank you for the idea! :)

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  5. Hi Michelle,
    Aw, I'm amazed at your story. It's so cute but touchign at the same time. I really understan dhow hard it is to do something that you know you "should" be able to do but you just can't get it done. I don't have speech problems but mine are with motor skills. I have a question on this: what is the difference between apraxia and dyspraxia? I read a bit on dyspraxia on Facebook and that mostly seems to have to do with motor skills in like walking and stuff. Is this true? You say your child has both so I'm confused.

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    1. Thanks for your comment, you're sweet!

      Honestly, I'm still learning about the Dyspraxia side of things. As far as I understand it (mostly based on what our speech therapist said) Apraxia is the side that affects her speech, and the Dyspraxia side affects her body. The speech is the most severe with Paige, so that's what we're focusing the most on, but like I said, I'm still trying to learn as much as I can about Dyspraxia, too! The phrase Dyspraxia is very new to us. Her speech therapist also said that both Apraxia & Dyspraxia are viewed differently in the UK vs here in the US, so that adds to my confusion! :)

      Here are a couple of links I've been looking at...
      http://www.speechpathology.com/ask-the-experts/apraxia-v-dyspraxia-1106
      and
      http://www.apraxia-kids.org/guides/slp-start-guide/the-terminology/

      They both explain it differently, so I think this is something that I am going to have to study for a while before I fully understand it.

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    2. Astrid, I've done some more research & although everyone seems to have their own definition of both Apraxia & Dyspraxia, this is the best response I can find for you.

      "As an SLP in the U.S.,I'll say that although "a-" may technically mean completely without and "dys" may mean partially without, as a rule we do not use those terms when it comes to the diagnoses of which you speak. The term "childhood apraxia of speech" covers the whole gamut of few words with difficulty in motor planning to verbose with difficulty in motor planning. If the child is totally without words, we are unable to label him with either apraxia or dyspraxia, because the diagnosis requires at least some word attempts. Where I live, "dyspraxia" tends to refer to fine and gross motor planning difficulty, with or without speech or oral motor difficulty. "Global apraxia" would connote speech, oral, fine, and gross motor planning difficulties."

      It was said to me by Rhonda J. Banford, M.A.T., CCC-SLP of www.gotospeech.com

      I hope this helps!!

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  6. I just read this for the first time, and when you described the moment you turned away to cry....I could relate. Any parent who has a child with apraxia can relate to that exact moment....the moment when we see them work so hard to do something that comes so easy to most children. That moment when you realize just how complicated speaking is, and you ache because it's your baby that showed you that.

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    1. You made me teary eyed, just reading your comment! It's nice to know that others understand, but also so sad that so many families go through that. It's heartbreaking, huh?! You worded it so perfectly. You really do ache!

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  7. Without going into a very long story, I understand what you are going through - and what you have been through. Have you considered augmenting speech therapy with ASL?

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    1. Yes! It works wonders! I always wanted to teach my babies sign language, but just never got around to it until Paige was first starting to show signs of a delay. I'm so glad we did, it helped so much! I understand that every family & situation is different, but I recommend it to just about anyone!
      Thank you for your comment! Although I am sad you went through something where you understand, it's comforting to hear I'm not alone. I'd love to hear your story if you'd like to share. Feel free to email me!

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  8. My cousin couldn't speak or even make sounds for the longest time till I tried out something I read on the internet. We gave her a kazoo, it's a 'blend' instrument between blowing and speaking, we moved the kazoo further and further from her lips till she was making her own noises.Now she can speak quite clearly, she's had lots of speech therapy, but the kazoo really helped her find her sound, she still loves it now :) x

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  9. Our little guy-13months old is in speech because of bilateral cleft lip and palate. He has had 3 surgeries so far. I relate to your journey. It is not easy. Thank you for sharing.

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I actually really love it when you comment! ;)

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