Monday, March 28, 2011

apraxia: one year later.

a little over a year ago...
payton was diagnosed with childhood apraxia of speech.

i cried.
i pouted.
i screamed that it is not fair.
i had a bit of a poor me moment.

and i moved on.

because baby girl needed me to move on.
she needed me to put a plan into place.
a plan that would hopefully one day allow her to be understood.

by us.
by her peers.
by anyone that she comes into contact with.

and so i do as only i know how to do.
and i butted it in the head.
full force.

for the past year...
we have gone to private therapy four times a week.
yeah... momma is a wee bit burnt out.

mondays and wednesdays.
private therapy with a PROMPT trained therapist.
we drive 45 minutes each way to see her.
our God send.

tuesdays and thursday.
private therapy.
ST. OT. PT.

among speech therapy she gets at school.

some will argue that less is more.
sorry, but i do not agree.
 i wholeheartedly believe...
that payton is where she is today...
because of the consistent, intense therapy we have done.

and we still have so far to go.
but baby...
we have come so far.

here is payton repeating an apraxia word list one year ago.

and here she is repeating that same word list now.

there are so many of these words she can now say more clearly.
she can put more of those consonant and vowel sounds together.

apraxia is a motor planning disorder.
there are several consonant and vowel combinations she still cannot do.
and there are some words where she still drops the final sound.

like the -se in please.
or the -t in eat.

or...
she tries so hard to get that final sound...
that she brings it to the beginning of the word.

i am so freakin proud of her.
and my heart seriously breaks as i watch her try to talk.
she wants so badly to be able to say what she wants to say.
but she literally cannot.
the wires do not meet and the only thing we can do it continue to try.

and we will not stop.
not until this baby girl of ours can say everything she wants to say.

because isn't that what she deserves?

and here she is a year ago repeating my unofficial word list.

and today...
the same unofficial list.

28 comments:

  1. My daughter has apraxia -- she's now 28 years old. We did tons of speech as a preschooler & up until 4th grade. Sometimes when she's tired, she gets a little hard to understand - but she works for a software company as a technical support person! Good luck.

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  2. well she definitly got much better!!! yay!!!! i love her voice, is so sweet :)

    and nika, how is she doing with speech?? :)

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  3. With Prompt, she can get the motor planning part. With cued speech she can SEE the ending sound of the word as it's spoken. Axel's new ST says he very probably does have apraxia, but she is giving him the benefit of the doubt right now since he's a new english learner. But, he can't say ANY of the words/sound combinations on that list, and they're sounds that are common to both English and Serbian.

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  4. She has done sooo well Bethany...I am wondering with Brayden...how do you know? and at what age do you know this? I believe whole heartedly also with all the therapies, it totally makes a difference in our kiddos...Way to go Momma, and Payton...You are amazing!!!!!!

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  5. Thanks for the update. I was just wondering how she was doing in the speech arena. Looks like she is coming right along!!

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  6. OMG, Bethany! She's doing great and what a noticeable difference in each video! Way to go Payton :) I know it's tough to drive and make all those appts., but boy, is it paying off. She's too sweet!

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  7. how fantastic! She is doing amazingly well...
    and I totally agree with you, exhausting as it must be, speech is so important in our society, people judge based on how well you talk...and she is doing great!

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  8. Wow, this is amazing to watch - way to go Payton and way to go Mom! When I was watching the first video I couldn't get over how similar Payton's speech sounds to our son Charlie's...speech is by far his biggest delay and it is also the delay that we just won't accept. He understands everything we say but just can't seem to get the words out. I think this might be the tipping point for us to schedule a visit to our local speech center.

    Thanks for sharing this wonderful milestone!

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  9. YAYAYAYAYAYAYAYAYAYAYAYAYAYAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Her vowels are so much more accurate, and her speech is so much more intelligible!!! Her consonants have improved so much too, and I heard the improvement in bi-syllabic words too!!! I'm soooo proud of her and of you!!!!!!!!

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  10. WOW! Awesome job!!

    I didn't you know were on the DownSyn forum and I was doing a search and came across your Dr. Leichtman (sp?) post. It said something about that he said she would talk sooner and then I saw this. So much for predictions, right?? LOL! I don't even pay any attention to them anymore.

    I just cut back from two speech sessions to one. Now, you have me thinking that maybe I shouldn't do that. ARGH! Olivia MOST likely has apraxia although we won't know for sure for another year...sigh..

    Good job mama!

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  11. And so you should be proud.she has made huge strides with surely more to come!

    I know it is a little different,seeing he doesn't sport the extra chromosome,but our Joe,had severe apraxia.As in,not a sound.Not a ba,or ga or da... not a sound, until he was 2 1/2.No joke.We use to say what a good little baby and boy he was,because we wouldn't hear a peep out of him when we went anywhere..... great mom I was,after 5 I should have seen something was amiss.Anyway,A switch literally flipped at 2 1/2 and we have never looked back.I just know that Payton will do the same.

    She really is something Bethany ... still loving the attitude the most!

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  12. she is doing awesome! What a cutie!

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  13. I just LOVE her! Seriously! So amazing Bethany! Thank you for sharing in such a wonderful way with the videos! SO great!!!!

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  14. Cute. Cuter. Payton.
    From a German reader, who does not have a child yet, but is no longer afraid of Down Syndrome or any other need because of the great DS-blogger-commmunity that exists today.
    Wish you alls the best,
    Kim

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  15. What a difference a year makes!!! That is awesome Mama- keep sticking with your gut, because it doesn't seem to have led you wrong yet!

    Oh yeah...and Kim's comment above? Totally made me cry. (In a good way.)

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  16. That is amazing! She is doing so great, you must be so proud. I recently took Nicholas for a prompt evaluation and we will have to travel 45 minutes each way for his private sessions. You gave me the extra push to go ahead with it. Thanks!!

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  17. Wow!!! As a former preschool special educator I am amazed by her progress in one year, and I can state with pretty good confidence she would not have made such progress with just school provided therapy. She is so much more articulate, her annunciation is better, her consonant vowel combinations are clearer, her two syllable words are clearer and have much better starting and ending sounds. You should be so proud of her, and of your dedication to getting her the best therapy available!!

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  18. Thanks so much for posting this! She is doing great. We think Myles (2 yrs 8 months) has apraxia as well. Not officially diagnosed yet, but has some red flags. No /p/, /b/, or /m/ sound yet despite lots and lots of PROMPT therapy. I can't wait to hear him say 'mama' someday. We celebrate the small stuff, as I'm sure you do.

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  19. o, yay Payton! just wanna scoop her up and give her a twirl. good work, Payton. and good work to you too, mama.

    big love.

    p.s.: i love it that your writing matches the sound of your voice. ok, maybe i'm weird, but it totally does. ;)

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  20. She sounds amazing and has come so far over the last year! Good job mama and Payton, you both deserve a big gold star!!!!

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  21. She is doing great! I love the before and after videos because you really see the huge progress! I know that it must be hard doing all that therapy, but it must feel good to be able to see such an improvement! Way to go to both of you!!!!

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  22. Congratulations! To both of you on your hard work and commitment! Watching that video is like watching my son, Jackson work on his speech. He will be four in June and has DS, and not officially diagnosed, is believed to have apraxia. It had been recommended to use recently that we try PROMPT and it has taken some time for us to find the right fit, we too will have some travel time in the car. Thanks for sharing this, it is truly inspirational! Thank you and good luck!

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  23. Peyton mage usge progress!! You should be proud>>>of bot of you. With your previous video- a yeat ago-you opened my eyes as well.Kallen struggled with similar problems. We did some Talk Tools exercises and he started saying the "g" as in aarg sound shortly after that. Then last year our ST started with promt. It is making a huge difference. The last month or so, something is just "clicking" We encouraged him with prompting to put the last letter in and he is now doing it eg: siT eaT ect. Not to forget that he has an aunt who prays daily for God to help him to say what;s on his mind - and we see that God is doing what we and therapy can't . Thanks for sharing

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  24. Love the differences in the videos - look how far she's come! Go Payton for working so hard!!

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  25. Bethany, that's fabulous improvement!!! Way to go, Payton... AND MOMMY!!!

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i got no shame... i love reading your comments... anyone who says they don't care about comments is lying... so let's hear it... muah!