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 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.”





Amy Kolbe said...

On Wednesday aryssa and evaleigh were practicing dance and grant asked Audrey if she danced too "no I 2 speech classes" she was very proud! We have a birth -3 eval for carson soon so any tips I am all ears!

Ashley Skye said...

This brings me to tears especially the part about her praying. Thank you lord for putting Audrey in our family. For perfectly matching her with her parents.