Monday, January 25, 2016

Our Journey Towards School

So apparently you guys do still read!! I was completely blessed by the number of emails & comments that I received in response to my last post "Choosing to Obey by Laying It Dow
A couple of you asked the unanswered question of "why" we needed to put the girls into a school, other than homeschooling. 


The short answer (which is never really short with me) is that because Audrey is receiving speech services through the school system, according to the State of Wisconsin, in order to continue receiving services after she turns 6 (which happens in March), she must be enrolled in some type of school other than homeschool (meaning public or private). Furthermore, for her to receive services from the specific speech pathologist that she has been working with (and that we LOVE) she needs to be enrolled in private school. 
Truthfully, our preference would have been the private schooling either way so this was one decision we didn't actually have to make, and really we saw as a sign from God that He was working out the details of this entire thing, long before we knew anything about it. 
We chose to put in both of the girls because their grades were both in the same classroom (at the private school we chose) and because Audrey is more of an introvert and the most "mommy dependent" (as far as wanting to be with me at all times). Alexa, on the other hand, is more outgoing and confident and yet fairly nurturing and protective of Audrey. We thought that by putting them both in, they would at least have each other. 


Audrey's speech issue, which is called Childhood Apraxia of Speech (CAS) is something that requires speech therapy. It is a motor speech disorder that people much smarter than I am, understand a great deal better than I do, but to say it simply, it's a speech sound disorder that signifies a lack of "planning and programming movement" for speech, it is a "neurological inefficiency" (not my words). To put it even more simply, when the brain sends the messages to the mouth to say something it involves messages to the jaw, the muscles, the tongue, etc. with apraxic children (or adults) those messages are not received properly, and therefore they are not able to make the proper sounds for speech. 

I recently read an article written by a young lady who lived with CAS and she does a great job at describing what exactly that means and what it feels like from the side of the one actually experiencing apraxia. As a parent, her article has actually offered me a lot of hope. If you have the time, it's a good read. 

Audrey was about 2 when we realized she had difficulty learning to speak. We weren't sure why, though we had had seen some similar struggles with Treyton, which he received minor speech therapy for, but then eventually overcame. When she was about 2.5 we contacted birth to three to have her evaluated and to hopefully receive services. By this time I had started doing a lot of research starting with with I already knew from Treyton and from what I could "see" Audrey struggling with. I was pretty sure she had Apraxia. 


After she met with the speech pathologist we were assigned and went through the speech evaluation she was diagnosed with some "phonological delay" (or something like that). The speech pathologists was really sweet, and Audrey liked her, so after birth to three ended we continued to use her privately for services (at $60 a session, twice a week). 
After almost a year we saw some but very little improvement. By this time we were realizing this was going to be a much longer process than what it had been with Treyton and we decided there was just no way we could continue paying $120 a week, so with the blessing of our current therapist, we contacted our school system. 

A few weeks later Audrey was being evaluated yet again by her "new" speech pathologist, Mr. G. He diagnosed her with Childhood Apraxia of Speech and within the week started her on a more specific therapy to address the specific needs of apraxic children. He did warn us that she had a pretty severe form of Apraxia and that it would probably take years, but that eventually, Audrey would grow up to speak completely "normally" and that people would never know that she had had such difficulty early on. 

Mr. G started meeting with Audrey twice a week right away and we saw a difference soon after. Mr. G. has been a great gift from God for our family. He's been supportive of our decision to homeschool, he keeps Tim and I well informed and even makes sure we have all the tools we need to be working with her as much as we can at home. He's met with us during summer break to check in, he calls to update us on progress, he has encouraged us when we've been discouraged, and basically attempted to train us to be "unofficial" speech pathologists. He has a great "fun" relationship with Audrey, she always looks forward to seeing Mr. G and has since the beginning has viewed speech as her "special thing". 

We've been with Mr. G now for 2 1/2 years, and Audrey has progressed tremendously. In short, we LOVE MR. G!!! 

Towards the end of last year, by kind of a chance happenstance involving a friend at church seeking services from the school for her homeschooled child, we began to realize that homeschool children were not eligible of services once they reached a certain age....  we had no clue.


So we started by asking Mr. G, then we spoke with his boss, and yup, sure enough.... by law in the state of Wisconsin once Audrey turned 6 she was no longer eligible for services. I was..... devastated. 

Personally, I didn't want to lose Mr. G, he has always worked very closely with me and I know this is not always the case. 
I didn't want Audrey to lose Mr. G, they have a great relationship and he has gotten to know her well. He knows her quirks, he knows her moods, he knows when she's trying, and when she's not. He knows her. 
I didn't want Mr. G to lose Audrey, not that he's ever said anything to us or tried to persuade us in anyway, but he's gotten her (us) this far. He deserves to see her all the way through!! 

There was no way I was okay with losing Mr. G, but at the same time, I didn't know what to do. 
Our options were fairly limited. Audrey still very much needs therapy. So we could (1) hire a private therapist again once she turned 6 (2) place her in public school so she could continue services from the public school (3) place her in private school where she could also receive services from the public school. 

The only option that kept us with Mr. G was option #3, and truthfully it was the only one we were ultimately very comfortable with. 



About 6 months before we had begun to realize all of this, I had stumbled across a private school in the town we live in through their VBS program. I loved it - it was this little 2 room school house with a total of like 20 kids from K-8th grade. I had jokingly said to Tim "Well, if we decide not to homeschool, I think we found our school." Ha Ha!! Jokes on me. 
(Interesting back story - I had made a very similar joke the Christmas before we moved to the Fox Valley from Madison.) 

September 2nd of this year, the day the public school started (I think) I get a courtesy phone call informing me that Audrey, as of March was not going to be eligible for services, something we had already figured out almost 6 months earlier. 

I love looking back over our journey to this point because I see how God had so many of the details worked out, long before we realized what was going on. I mean He had even given us time!! He had given us an extra 6 months with this information, and I'm not kidding when I say I needed every hour of it! We needed that time to process; to process what this would mean: for Audrey, for us, for the other kids. The time to weigh out all of our options. The time we needed to pray. The time we needed to prepare our hearts. 



Again, I'm not trying to be melodramatic here, but this was a big adjustment to us, on a lot of levels. 

We fully understand that Audrey's struggles pale in comparison to other's. She is a beautiful, healthy, smart little girl who is overcoming a struggle but that straggle will not take her life, or cause her physical harm. We are blessed, and we know it. 

But when did we get so caught up in comparing struggles or thinking that because our struggle isn't as bad as someone else's that it makes it any less of a struggle? No, I don't want to be dramatic. I never have (it's actually a little bit of a pet peeve of mine), but I do want to be real. And sometimes being real means sharing struggles that may seem trivial to someone else, or that may seem over exaggerated to someone who hasn't walked through it. 

I'm okay with someone feeling this way. And I certainly don't want anyone to think that our entire life revolves around this one thing. This one struggle. It doesn't. Not even Audrey's life revolves around her apraxia. 



But. 
A big part of our life does revolve around it, from the miscommunications, the frustrations (on both ends), the "translating" for other people, the never-stopping-alway-happening "therapy" and reminders we do with her, the twice a week appointments, the more structured therapy we do with her at home, the mistakes we've made because we thought she said something she didn't actually say, the looks from people who don't know her, the reality that because people can't understand her they think that she isn't developmentally "normal", the tears I've cried into the shoulder of my husband because I'm not sure what to do or how to help her overcome a particularly rough patch, the tears she's cried because she was misunderstood.

It isn't our whole life, but it is a part of our life. All of us, all 6 of us live with this and it affects all of us in some way or another. But it's not all bad. 

Audrey has never felt "different" in a way that made her sad. She's noticed she doesn't talk the same, she knows people don't always understand her. Her siblings do not think negatively towards Audrey or her speech, it's just a part of our world, and they have never known anything differently. Especially Titus, who has had to relearn a few words a phrases after having Audrey "help" him pronounce something ;) Nicknames have been given because of the apraxia and I love them (Treyton is Treytee, Alexa was duck-duck from a long time, Titus was Ty-tee). 



I mentioned that I cry, and sometimes I do, but not very often. I'm actually far more proud than I am sad. 
I'm proud of how hard she works. Of how much she has overcome. Of the disciplines that she's developed. When Alexa or Treyton step in to "interpret" what she's saying. The way Alexa stays close to her, and wraps her arm around her shoulder when they're in a new place. There's so many things that make me proud. 

Audrey's journey isn't over, praise God, and neither is ours. We're not sure how long Audrey is going to need therapy. We're expecting at least another year and half if not two years, and honestly, maybe more. This isn't an exact science, we don't really know for sure. 

But we know that One that does. 

p.s. I obviously lied about this being a short story :) 


2 comments:

Erika Daniels said...

Our Keziah has a speech disorder too. I hear and know your struggles...my heart breaks too often...to see my daughter's beautiful social self not being understood...I hate to hear other kids say "why do you talk like a baby?" She has soo much love and kindness for others, i dont want her to lose that...she starts kindergarten next year and my biggest fear is that she will feel less-than, not smart, or lose her joy in any form. I want to put her in a bubble, but instead I lay her in God's hands which is the only way this mama has peace. He makes us strong...He is a constant rock, peace and love in this time of need. All this to say, I'm with ya honey, and pray both our girls are blessed with a miracle from heaven soon. ;)

Erika Daniels said...

Our Keziah has a speech disorder too. I hear and know your struggles...my heart breaks too often...to see my daughter's beautiful social self not being understood...I hate to hear other kids say "why do you talk like a baby?" She has soo much love and kindness for others, i dont want her to lose that...she starts kindergarten next year and my biggest fear is that she will feel less-than, not smart, or lose her joy in any form. I want to put her in a bubble, but instead I lay her in God's hands which is the only way this mama has peace. He makes us strong...He is a constant rock, peace and love in this time of need. All this to say, I'm with ya honey, and pray both our girls are blessed with a miracle from heaven soon. ;)