Monday, November 25, 2013

Audrey's Journey

Almost a year and a half ago Audrey had her first speech/development evaluation through our county's birth to three program. She easily qualified for the program, though I don't recall exactly now what percentile she fell into (or even if they told us), other than I knew she was under the 25th percentile, which was what a child needs to be to qualify. We had the speech therapist coming into our home once a week for several months. In September of last year, when Titus was born, we ceased the services for two reasons. First, we honestly weren't seeing much improvement from the therapy and secondly, we were about to have a new baby. After Titus was born, and it was clear he was going to need a little more attention for a while, we decided to do what we could at home for Audrey while we adjusted to life as a family of six.IMG 0107

I began reading, researching and working with her on my own. 

Basically, I "self-diagnosed" Audrey with what I thought was a form of Apraxia of speech. I had started reading anything I could find on speech therapy and delays to see what I could do at home to possibly "help" Audrey start talking. I contacted her previous therapist to run-by her, what I had thought I had found and was comforted in the fact that she had come to basically the same diagnosis while working with Audrey, that I had come up with.  

Treyton had had a some-what similar delay in speech, although his was not nearly as severe as Audrey's, he had needed little help, and mostly just time to "catch up" to his peers in his speaking. And what we learned about Treyton (and what I believe to be Auditory Processing Disorder) is that it had very little to do with his actual speaking and a lot to do with his retrieval and storing processes. By studying and reading everything I could about Treyton's difficulties we found some very simple and helpful tools and processes to help him not only understand but to live with and to function well with his personal struggles. 

I was hoping that I would be able to do the same with Audrey. IMG 9739

After several months of trying, we realized that that was not going to be the case and that Audrey was going to need more than "just time". 

The tips and tricks I learned on my own during that time were and have been very beneficial for Audrey and I saw some improvement in her sounds and effort and it was fun for both of us to have designated time to "play" together. However, most of the time, I wasn't confident in what I was doing. Clearly, I am not a speech therapists, and while I had a researched-guess approach, I still wasn't sure. 

I contacted Audrey's birth to three therapist, who we really liked and Audrey was already comfortable with and we started discussing private therapy.  Audrey was now over the three year old cut-off for the birth to three program so we could either go through the school or pursue private therapy. We had had a very disappointing experience with the school therapy when we were going through Treyton's issues, and although we had since changed school districts I was skeptical (at best) to go that route again. 

It took a while to get all of our ducks in a row with where, when and how we wanted to proceed. Knowing that there was going to be a lot of cost and running-around involved, we wanted to know we were following God's will for Audrey and our family. In late summer, Audrey had another evaluation. At this time, the therapist was leaning more towards a phonological disorder, rather than just Apraxia. 

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Here is what some of Audrey's speech looks like: 

Audrey has great vowel sounds. She can say all of her vowel sounds and most of her diphthong sounds (vowel team sounds) other than /oi/.

She struggles with something that is called "stopping" which means she will substitute a stopping consonant (/b/, /d/, /k/, /t/, /g/). For Audrey the worst case of this was at the ending of her words. 75% of her words were ending with the /k/ sound rather than whatever sound was supposed to be there. For example at times "mom" would be "mok", dog would be "dok", gum was "nuk", cup was "uk". This is one of the primary reasons why i brought her to an actual therapist. While I could get her to say and practice new sounds I couldn't really get her to stop adding in other sounds (namely the /k/) ending. 

Audrey is pretty good at keeping syllable beats (I'm not really sure how else to say that). For example if she wants to say "puppy dog" she will say something similar to "pu - ky - dok" she will have the correct number of syllables, they just not be pronounced right. In fact, the longer a word is the worse her pronunciation of it may be. 

Her errors can be very inconsistent, which makes understanding her the most difficult. What i mean is, at one time water may be "wawee" and the next time it might be "wawka". 

The words that she does say consistently are often wrong. Gum has been "nuk" for a while, which obviously is not even close to an accurate pronunciation, but is a word that is understood by Tim and I. She has developed several of these "bad habit" words (as i call them) and it is very difficult to get her to try to change them. I think because she is understood so little, if she does have words that are understood, she doesn't want to change them, at the risk of being misunderstood even more. 

There is lots more, I'm sure I'm leaving out, but these are the major things that come to my mind when I think about the patterns I've seen. 

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More Therapy 

After three month doing private therapy every week, I started talking with her therapist more and began to realize Audrey really needs even more therapy than just one 30-minute session a week, but to afford private therapy is a tough decision to make, especially considering that Audrey will more than likely need therapy for the next several YEARS of her life. 

At this time we started praying and talking about having her seen through the school. 

After praying about it for a while, I made the call to the school. 

Audrey has now been through 4 or 5 different evaluations and tests with the school therapists (who BTW has been really great). She tested into the 1 percentile on the Goldman-Fristoe test of articulation, which I believe was the same score she had been given with her previous two tests. She was given several other evaluations as well. 

The school therapist is leaning more towards the apraxia of speech and is planning to approach her therapy slightly differently than her private therapist. Though this may sound like a disagreement between therapists, it is not. Both therapists agree that Audrey has (or has had Apraxia) and shows signs of it. They have been in contact with one another and are working together. They have agreed that using two different approaches can and will be beneficial to Audrey at this time. 

For now, we are going to continue doing private therapy once a week (or once every other week) which has been our schedule thus far. And we are going to be doing at least two 30-minutes sessions at the school each week. Which means Audrey will have speech at least three times a week, plus at-home therapy with me. The school therapist is eager to work with me, and has told me he's going to turn me into a "little speech therapist". He is planning on sending me home with DVDs, books and flash card sets to use daily at home with her, in addition to her visits with him. 

I will be truthful here, this is going to be a lot on our family. We obviously homeschool, and while I don't know what that looks like for everyone, for us, it means we are at home (a lot). Going out and about this often is going to be an adjustment on all of us. 

We have been told that this is going to be a slow-and-steady process. Which we had already realized from the last several months that she has been in therapy, there is no quick fix. There will be improvements, but it's not going to happen overnight. Our biggest challenge, as parents, is that we can not allow ourselves to be disappointed or discouraged by this. This is what it is. But if Audrey even slightly picks up on discouragement from us, it will dampen her own enthusiasm, which we know is a rare gift. 

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What is Apraxia? 

I feel as though I should back up just a little bit and explain in more detail what Apraxia is. In my research I have found a really great website called mommyspeechtherapy.com and she had a very helpful definition posted on her site. It said: 

"Apraxia is a type of motor speech disorder that affects the way the body is able to produce speech. Motor speech disorders are neurological in nature, meaning a child’s brain has difficulty coordinating the different body parts needed to produce speech—the tongue, lips, and lower jaw. Due to this neurological difference, children with apraxia struggle with sequencing and articulating sounds, syllables, and words when they are trying to communicate. As a result of these struggles, children with apraxia can be difficult to understand. Apraxia is different from other motor speech disorders in that it is not caused by muscle weakness, a limited range of motion, or paralysis of any muscles."

With Apraxia, no practice is bad practice. Any work that Audrey gets repeating words correctly and making sounds correctly is beneficial to her. Which is why it makes sense and is okay that her two therapists use two different approaches. There really isn't a wrong way. 

 

Blessed Beyond Measure

If there is one thing that I have learned throughout this process, particularly in the last several months, going through several evaluations, hours of therapy, hours and hours of "therapy" at home one-on-one with Audrey, working with two different therapists, and talking to other mom's who have had children with the same disorder it is this: 

Audrey is an amazing little girl. 


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She is smart. Very smart. She has learned a lot and has a lot of information stored in her little brain, just because she can't say it doesn't mean she doesn't know it. And when we are allowed little glimpses of what she actually knows, I am always surprised!! 

There is nothing "wrong" with her. She has a disorder, yes, if that's what you want to call it. But this is not a mistake, this is not a defect. It is a part of who she is. It is something she will overcome and that will shape who she is and what she will become. She is blessed. She is different than other kids, yes, but all kids are different in some way. Some differences are accepted more easily and readily by others, but that doesn't make them any better. This is something that makes Audrey different, not worse, and certainly not less. 

She is determined. Over-and-over we have been told how unique it is to see a child with such a severe speech disorder try so hard and imitate so well. She not only does her speech therapy and practices, she likes it. Of course we make it fun and it's basically playing games, it still is very hard work for her to try and form sounds and pronounce words, but she does it. This is not the norm. 

She is funny. She is goofy and silly and loves to tell stories. Even though she is misunderstood, and often times ignored by those who think she is talking gibberish, she hasn't let that change her. She is not as outgoing around other people and she doesn't always show that side of herself to those who don't understand her, but at home with her family, she continues to be who she really is. She continues to try and to push through and give more and more of herself. 

Audrey is eager. Audrey always wants to do speech. When she prays at meals or at night, the first thing she thanks God for and asks him to help her with is her speech. It makes her feel special that she has "two speech class" :) She does not view it as a negative thing, she wants to do it. She wants to be understood and she likes that she has "her own thing"…. just like Lexa's dance class (she says). :) 

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Real Hope

It's been a long road, and I feel like we've had to make a lot of decisions, some of them hard, some of them easy, and I know that we have an even longer road ahead of us. But I'm excited. I'm optimistic. I know that God is in control and that He's been with us and Audrey all along and will continue to be for whatever lies ahead of us. I feel like for the first time, we have a plan, a real plan. 

I'm hopeful. 

Months ago, while reading through in my Bible I read these words that the Lord spoke to Moses, I typed them up, printed two copies out (one for me and one for Tim) and we've held onto them as our prayer and hope for Audrey. I want to close with these verses, because at the end of the day, this is what brings us the most comfort and offers us the most hope. 

Exodus 4:11-12

11 So the Lord said to him, “Who has made man’s mouth? Or who makes the mute, the deaf, the seeing, or the blind? Have not I, the Lord12 Now therefore, go, and I will be with your mouth and teach you what you shall say.”

 

 

 
 

Sunday, November 24, 2013

Review: Merry Larry & the True Light of Christmas

Our family LOVES Ducks Dynasty. 

We also like Veggie Tales. 

When I heard that Si Robertson from Duck Dynasty was in the cast of this years Christmas DVD, I knew I wanted to own it. 

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Movie Description: 

"Larry The Cucumber stars as "Merry Larry", an enthusiastic employee of the Spring Valley Mall who serves as "Head Elf" during the Christmas season. Each day he hears countless children's requests for what they'd like under their Christmas trees. But one little girl's request catches his attention - Little Christina just wants to help her friend, Mrs. Crespie, who lost her house in a fire, get a new house for Christmas! Merry Larry sets off on a caper to create the biggest light show EVER to bring attention to Mrs. Crespie's situation. Meanwhile, the mall manager, Philip Fleagle (Bob the Tomato) finds he has NO lights and no head elf for the mall's spectacular Christmas display - right on the day the owner of the mall is supposed to visit! Will Philip realize what the "true light of Christmas" is really all about and help Merry Larry rally the community to get Mrs. Crespie's in a home by Christmas? Find out in this all new VeggieTales story where kids learn that "Christmas shines most bright and true, when you give the love God gave to you."


Review

As soon as the DVD came in, the kids and I tore into and watched it together. 

We liked it.

I love that they cast Si Robertson as the narrator, I mean seriously, who does't like listening to this man talk? The fact that he was in this movie made it an instant attraction for us. 

The ages of our kids range from 8 years old to 1. Titus (our 1 year old) obviously could care less about which movie is on, but the other three all like the movie. Treyton has in many ways "outgrown" the Veggie Tales season of his life, but he is a duck dynasty fan, and because of that, I think he's given himself permission to enjoy this particular Veggie Tales movie. 

The kids are not given too many opportunities to watch movies, but since getting this DVD, this has become a highly requested one to watch, when they are allowed.

We also really liked the theme song by Owl City, featuring Toby Mac (which you can watch on youtube here). It was really catchy, the kids and I actually sat through the ending words of the song to listen to it. 

Overall, I would recommend this movie for a fun clean family movie that has a good message about the true meaning of Christmas. 

My only "complaint" would be that I wish that they had even more Uncle Si!! 

 

Disclaimer

I received this DVD for the purpose of review. The opinions expressed are my own. 


Monday, November 11, 2013

Review & Giveaway: The Sparkle Box

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The Sparkle Box written by Jill Hardie 

Book Description: 

A Gift with the Power to Change Christmas 
Sam is so excited about Christmas! He's thinking about his Christmas list, looking forward to holiday parties, and puzzling over one very mysterious gift: a sparkly box sitting on the mantel. In the midst of the festivities, Sam and his family participate in various acts of kindness to others. On Christmas morning, when Sam finally opens the Sparkle Box, he finds only slips of paper that record the family's good deeds. Sam's mom explains that the things that they've been doing are, in fact, a gift for Jesus, for Jesus said that whatever we do for those in need, we do for Him. 

Book Review: 
I originally read this book to my three year old, who sat through the entire book pointing at the beautiful illustrations and asking lots of questions. When we got to the end of the story, she asked to read it again. And then again. 
The next day I read it to all the kids (ages 3, 5, and 8) they each enjoyed it, and it "sparked" lots of great conversation. 
The kids and I assembled the included sparkle box (which, by the way, we all were fascinated by…. and who wouldn't be, with all that glitter/sparkle!??!) and talked about ways that we might serve Jesus during this holiday season. The older two kids each made a list or drew pictures of ideas that they had, some from the book, others, I was delighted to see were ideas of their own.
Since then, we have worked at making a few of their ideas a reality, one of them was to give warm clothes to kids who might be cold - we had the kids pick out a few of their gently used coats to donate, and 1 new coat that we had gotten last year on clearance, that we really didn't need, the kids delivered them themselves to the drop off locations. There were several other ideas that our family is excited to do this season and we plan on taking the time to fill the sparkle box which now sits on our mantle. 
The great thing about this book is that it's not just a good book to read, but its a practical way to work together as a family to not only create a lasting tradition to come, but to also to serve Jesus and others during the holiday season. 

Book Giveaway: 
Flyby promotions is offering one of my readers a free copy of this book!! 
To enter the giveaway submit a comment of an act of kindness or generosity that you and your family would like to do this holiday season. Please be sure to leave your email address so that I can contact you. 

This giveaway is open to US and Canada only 
The giveaway will end Monday, November 25th at 12:00pm 
I will select a winner using random.org 

Disclaimer: I received a copy of this book to review, the opinions expressed our completely my own.