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Tuesday, May 14, 2013

Every Child Deserves A Voice!



My almost 4 year old tells me 'NO' all the time right now, and I allow it.  I enjoy it even.  It is a word that I have waited to hear for years.  I have waited so long to hear something other than grunts come from him since he was barely 2.  That is because my youngest son has Childhood Apraxia of Speech.  He struggles daily to communicate with everyone in his circle.  Today is the first annual Childhood Apraxia of Speech Awareness Day.  And I want to tell you our story and how this disorder has affected our lives.


My son never babbled as a baby.  He was such a quiet serious little ball of adorableness chub.  When he was born I also had a chatty 2 year old.  He was never a quiet child, and I won't lie, I enjoyed having a quiet baby.  I could just cuddle with him and we would sit in the bed and watch tv.  As he grew older I did notice that he was not cooing or making any sounds, like his brother did, but I figured he would in his own time. After all, everyone had told me not to compare him to his brother.  All kids are different. They all develop in their own way.  But when he was 18 months and his only sound was 'BA', I did feel that something was off.  He still couldn't say 'Mama', a word that his brother mastered at barely 9 months old. So, I began the process of having him evaluated by Early Intervention.  It was a massive amount of paperwork and lots of meetings.  But we got through it and he qualified for speech services because he was severely delayed in his language development.  He started receiving speech therapy at 22 months old.  For the first several months he did nothing during therapy.  He just watched the therapist play and make sounds.  But one day he mimicked her sound and I saw a glimmer of hope.  I saw that my baby was trying.  We also started teaching him some basic sign language.  He mastered 'MORE' very quickly because he saw that it yielded quick results, and usually got him more milk or food.  He slowly improved as the months went by.  We celebrated in every new sound that we heard from him.  We had stopped listening for full words and instead started listening for sounds.  He started calling his brother 'Iiiii' for 'Eli' and he finally learned to say 'Ma' when he was 2.  I was so excited. I finally had a name.  Despite his delay in speech, he was a very happy and playful little boy.  He loved trucks and cars.  He could make all kinds of sound effects when playing with a dump truck.  The day we heard him say 'beep' when he backed one of his trucks up was a day of celebration.  We asked him to say it over and over.  I recorded it and sent it to his therapist.  Once again, that glimmer of hope flashed in front of my face.  We kept him in speech up until we moved to Tennessee.  When I told our therapist that we were moving she told me that she believed that Zack may have 'Apraxia' and urged me to look for a therapist who specialized in it.  I had no idea what Apraxia was. I thought it was just a name for some kind of speech delay.  It sounded like a therapist word and I didn't speak that language so I didn't think much of it.

Once we moved and we started to settle in, I made him an appointment to be evaluated again for speech therapy.  He was too old for the Early Intervention in Tennessee, but too young for the Preschool Program.  So I had to seek out private therapy.  He was almost 3 when he was evaluated the second time.  His age equalivency was that of an 11-12 month old.  He struggled with the new therapy that started receiving.  Those glimmers I had previously saw started to show less and less.  I told his new therapist about his former SLP mentioning Apraxia. After a few sessions she said that she agreed and thought that he might have Apraxia too.  So this time I looked it up.  I read articles and articles on this disorder.  And I cried. I read about the possibility of him never overcoming it.  I read that learning to read would be difficult for him.  I read so many things that just shattered my heart.  I thought he would eventually catch up.  When he turned 3 his older brother said 'Now you are a big boy Zack! You can start talking now!' and it broke my heart, again.  His 3rd year has been his best in speech. He has picked up several new words and he tries so hard to communicate with us. Which is great, but I see him struggle every day.  I see him try so hard to talk like his big brother and fail.  I think the hardest thing about it all is knowing that he has all of these thoughts that are trapped inside of his head.  So I embrace his stubborn little 'NO!' when I hear it.  And I respect it. I respect that he has mastered this word and can now voice his opinion! And although I do have to put my foot down on some things, he does get a little more flexibility when he protests the small stuff.


If you are reading this and you have no idea what Apraxia of Speech is, you can read about it Here.  Apraxia is a neurological disorder that effects the motor planning in the facial muscles.  Kids with this disorder can understand you and even know what they want to say.  But forming words is very difficult.  Children with CAS need therapy more than just once a week.  They also need to learn how to shape their mouth to say sounds and form words.  It is a hard road to travel.  It is frustrating at times, but when my little man masters one word it is such a blessing.  So today, on the FIRST EVER Childhood Apraxia of Speech Awareness Day, I celebrate my Zackariah! He has a voice and Apraxia will never define him!

11 comments:

  1. Great post! We didn't get our diagnosis until a few months ago when she was over 5, she will be 6 in June. Her speech is the equivalent of a 2 1/2 - 3 year old. But I will say this, my girl can read! We've been working with her at the house and she can read around 100 words! I have hope that she will overcome it! The 2 therapist she works with (school and private) have both had kids with Apraxia and they have got through it, some better then others. Don't give up hope! We will hear their voices one day! We will know how their day went at school. Or instead of a grunt, we will hear 'mommy can i have that please'!

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  2. Excellent post. Perhaps sign language in the meantime so his thoughts are no trapped?

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  3. I had not known of Apraxia until now. Thanks for enlightening me.

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  4. I recently learned of this yesterday when a friend posted about it about her son. Keep celebrating those small victories!

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  5. Your post was very well written and the found your story so touching and so full of information at the same time. I felt it to be revelant to me as a parent of a child with speech delay also. I do somewhat know how you feel ,I think my 5 year old thinks Iam crazy because everytime my son says simple words I get excited.he is 4 and is just now starting to speak but alot of his words are babbled.Good luck to you and I hope his words get better.

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  6. Thanks for sharing your story! I'm glad he is making progress! All the best!

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  7. I had never heard of Apraxia. I am sorry to hear about the hard road you have found yourself on. But I am glad to hear he is making progress. It is such a touching story, thank you for sharing it with us. Good luck to you, and to little Zack!

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  8. Wow! I had never heard of Apraxia before.

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  9. My son is 23 months and still has not said a word and although I have showed concern to his pediatrician he insists that all children develop differently but I would really like to have him evaluated just to be on the safe side and if not to get him started on therapy as soon as possible.

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  10. Wow...I never heard of it before.

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  11. Priscilla- Contact your county's early intervention office. That was where we started.

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