Friday, July 31, 2009

Bad day

Did I mention some days are better than others? Well today was horrible. Emmie had such a hard time today with everything. Everything I said had to be repeated, often more than once. We went shopping for shoes since summer is coming to an end and school is around the corner. Emmie seemed to fumble with every pair she tried on. She missed most of the conversation in the car and instead sat in the backseat singing to herself. She struggled to interact with anyone. You know how it is when you go to a restaurant, you sit down and the waitress comes over to tell you the specials, but she is talking so fast you barely got her name? That's how today was for Emmie. Everything seemed to be going too fast around her and she just wanted it to slow down. I could feel it. And socially, today was just as hard. Carrington and Jensen are typically very patient with her. But with her difficulties she often tries too hard to fit in. Emmie wants you to know she can do what everyone else can do. And today, they had it with her before breakfast. She often tries to hard to play with them. They would be happy to include her (okay, sometimes they just want their baby sister to go away and play dolls) but for the most part they're cool with her tagging along). Today she was loud and in their face. They went outside to ride the ripstick, this clever little skateboard, and Emmie was tagging right along. "Hey guys, Hey me, watch me". They tried their best to humor her and be patient, but it didn't last long. Finally, Carrington said to her "Emmie, we just want to ride and play before dinner". She was nice, but I know Carrington just wanted to yell at her and actually I was surprised she didn't.

Everyone has a bad day and today was Emmie's. I'm not sure what triggered it or if I should just chalk it up to "just one of those days". I can't help but feel sometimes the days are too over stimulating for her, she goes on auditory overload? Am I totally screwing this up? What should I have done today? She needs to be included in the everyday "life of a family", but should I have just stayed home with her and seen what happened? Maybe next time we'll try that. Maybe we'll try to ride in the car with the radio off, maybe I'll make conversation cards for her-something visual for her to see and follow along like a game? The Boardmaker program would really come in handy, but we can't afford it. (More on that program later!!). What do you think?

It was a long day and I'm exhausted. I can only imagine how Emmie feels. Hopefully tomorrow will be a better day.

In her own words

Tonight I asked Emmie what I should write about. She has been the inspiration and the reasoning for this blog after all. Emmie said I should write about her. Okay, sure, I responded. Here's our conversation:

Emmie: Mom, can we have a snack?
Mom: Yeah, a small one.
Emmie: Can I have four cookies?
Mom: What kind of cookies?
Emmie: Animal cookies
Mom: Sure

Two seconds later..

Emmie: Mom, what are you doing? Checking your EEEE-mail? (she always puts too much emphasis on the E part!)

Mom: No, logging into your story. (that's what I call her blog)
Emmie: what are you writing?
Mom: Not sure yet. What should I write?
Emmie: Ummm...something about me. I got a new haircut.
Mom: I know you did! It is very cute. What else should I write?
Emmie: Well, who is gonna read it?
Mom: Mom's friends, your daddy, Me-maw, and maybe a few more people
Emmie: Wow
Mom: So, come sit with me.
Emmie: With my cookies?
Mom: Sure. Now, if you could tell everyone something about yourself..what would you say?
Emmie: Let me think.

Of course there is a pause while she sees how many animal crackers will fit in her mouth...bye bye lion, see you later monkey (and she tosses aside the piece that looks like the bum of an elephant)......

Emmie: Okay. I'm ready.
Mom: If you could tell me about you, what would you say?
Emmie: I would say I got a haircut.
Mom: And?
Emmie: And, I'm making daddy a picture to show him. Oh, I like to color and I am eating cookies. I looove cookies.
Mom: Is that all? What else do you like to do?
Emmie: I like to dance (as she throws her arms in the air). And I like to read.
Mom: You like to read?
Emmie: Yeah, I'm getting good at it. I wasn't good before.
Mom: You are getting really good!
Emmie: Yeah. It is HARD work. I like to read but it is hard.
Mom: So you want me to tell everyone that you like to read?
Emmie: Yes. But don't tell anyone I can't do it very good.
Mom: Don't worry, you are great at it.

And that's Emmie, in her words, right now. She loves what other little girl loves. She wants to read like they do to. She tries really hard and sometimes she gets the words right. But most often, she stumbles over them. Often she looks at the pictures on the page and tries to put the words together. Sometimes it works, sometimes it doesn't. But don't tell her that I told you, otherwise I may get stuck eating the elephant's butt!


Wednesday, July 29, 2009

My boat is sinking

If I would have started this post a few hours ago, I have to admit, it wouldn't have been a family show! I am so frustrated by the lack of support we are receiving. Last Friday I called the appointment hotline to schedule three "well child" appointments for the kids. I also explained to the lady at the appointment line that I also needed, for Emmie, to ask the doctor questions about a referral for speech therapy and get a medication refill. "No problem, we have your children booked for July 29th from 3:00-3:45 pm". "GREAT!", I said! After all, carting three kids back and forth to the doctor is a hassle it was great to have them back to back. On Tuesday, I received a message from the Pediatric Clinic. They wanted to cancel my son's appointment because he had a "well child" appointment in Jan. Actually, he did have an appointment but it wasn't a well child check up..the boy was sick. And they also wanted to cancel Emmie's appointment because she had a well child appointment in December. Umm, again, no. She did have an appointment in December, however it was yet again to clear up the hearing screening mess that they started. Knowing I wouldn't be awake at 7:30 am to return their call when the clinic opened (hey, it's summertime after all), Doug agreed to stay at the office late and call them for me from Germany. He called them and called me around 8:30 am. He said he canceled Jensen's appointment (I'll deal with that later, thank God he's a healthy kid!) and they were going to work Emmie's as a 30 minute appointment since the time slot was already booked for the family. Apparently during well child appointments, they refuse to do medication refills or anything that requires them to actually do their job. It's a 15 minute, shuffle you in and out, appointment. Fine, they worked with us...I'm okay with having to reschedule Jensen. I get to the Pediatric Clinic, with Emmie's binder of information in tow, only to have the receptionist, who we will call Little Miss Sassy pants with the major attitude, tell me that is NOT what she told my husband. She told him she would have to speak with the doctor and as of 2:40 when we arrived she had yet to get off her fat butt and speak to the doctor. She was obviously making it up as she was going along. Call it years of living with a Mental Health Tech, but I can read people. Me and her exchanged some words, obviously my husband isn't a liar, the poor guy works at the hospital and knows a thing or two about booking appointments and why in the word hasn't she already spoken to the doctor? So, she asks me what I needed to see the doctor for. I explained to her I needed to get a medication refill, told her the medication, and she hoped on the computer and said she could take care of it for me right now. Awesome! So, I then went to tell her about the referral I was going to ask about. Emmie is receiving speech therapy at school, but I would love to have supplemental therapy at a private therapist in the hopes of working with the Fast Forward or Lindamood Bell programs. I explain that Emmie was diagnosed with Central auditory processing disorder and I would like to see about getting a referral for speech therapy. She jotted down the word "Audiology" on her note pad. and said, "So, she needs to see Audiology." "NO, she doesn't need to see Audiology. She has had several pure tone hearing screenings and when you process that referral Tri Care is going to order another one." Again, she repeats herself. Frankly, I wanted to jump across the desk and pop her in the mouth. For those who know me, you know I can get a little...redneck...especially when it comes to the kids. I reached across the desk, grabbed a pen and marked Audiology off her her list. She wasn't getting it, like most so far. I repeated myself again about the speech therapy and finally she wrote "speech" on her notepad. Anyway...height and weight for Carrington were taken and off to the doctor we went. I have seen this doctor before and really liked her, but today, sporting a new name and dress that really should have been a little bit longer, she came in the room. She saw Carrington and her appointment went well. Next we come to Emmie. Very pleasantly the doctor asks what sort of referral we are requesting and I explain the whole situation. I am not sure what the point of having medical records are as the doctor never seems to review them. Mind you, this is the same doctor who finally got the referral for CAPD assessment correct. I explain to her the nuts and bolts of Emmie, quickly as I could tell she was done with us and it was barely 3:15, and why I want additional speech therapy. Her response is "don't they do that at school?" "Yes! She does receive Title I instruction, Speech Therapy, and Resource. However, I am seeing minimal improvements in her auditory memory and cohesion. I would also like to explore more options to increase her phonemic awareness...." and on and on. I seemed to lose her after I said Yes! I went on to tell her about the last referrals and how the words have to be chosen carefully or more hearing screening referrals would arrive in my mailbox. She agreed to put in the referral but only if I understood Tri Care only covers speech therapy for children under the age of 3. Seriously? I don't care if I have to work at 7-11 as the Slurpee machine cleaner, I am going to do what I have to do to ensure my child will succeed. "Fine. I don't know why you need a referral, but I'll put one in". Never once did she ask where the diagnosis came from, how long we have known of her struggles, major concerns, her school performance, to see her hearing screenings, or any other "important" questions. Nor did she say one word to Emmie or try to watch her as she ate her cookie and flip through the "If you give a mouse a cookie" book. Never a "so, Emmie, how old are you?" or a "What book are you reading". NOTHING! Emmie didn't speak during our time in the doctor's office. And I do use simple sign language with her and during this visit I used two signs. Why sign language? Emmie is a verbal child (oh man, is she!) but the extra visual symbol allows her to put the picture with the word and improves her visual spatial memory. Anyway, she was eating an animal cookie and I made the sign for "finished?" because I could tell she was looking around the room for a trash can. She nodded and handed me the bag. I also made the sign for "listen", as I wanted to her pay attention to the doctor in case the doctor spoke to her when it was her turn. Emmie knows if she sees the sign for listen to stop what she is doing and look directly at the speaker (we also use a verbal command, but in some situations a sign is more appropriate). To be honest, this doctor has no idea if my child is a verbal or non verbal child. I don't feel like she treated Emmie as a person or even patient and more like just something she had to be bothered with. We left the clinic at exactly 3:34. We still had another 11 minutes of appointment time. So what was the big deal in the first place? We didn't take another person's slot?

I left the clinic and went to the pharmacy. Little Miss Sassy pants did not put her allergy medication into the system. I was so frustrated by that point, I said forget it. I'll buy it over the counter (Thank God Zyrtec can be purchased over the counter for children). Then, straight down the hall, around the corner to the Tri Care office. I sat down and explained the situation again and a few clicks on the keyboard and the representative told me she wasn't sure where the doctor received her information but speech therapy is indeed covered. No, age 3 limit. She even jotted down on a pink note card where I could find the information and print it out, just in case. Bless her. She could tell I was not having a good day.

So, here I am. Again in the same boat I was before. Most days, it feels like I am the only one fighting this battle for Emmie. I know Doug tries, but he's too far away and gone too often to be as involved as he wants to be. Again I am here paddling and praying that we stay afloat. And has anyone opened the phone book or surfed and tried to find a speech therapist in this area? The search is coming up pretty dry and I still can't figure out how our EFMP reassignment landed us back at Travis where our child still isn't getting what she needs. I hope I can hold this boat by myself....where did I put those life jackets?


Tuesday, July 28, 2009

Never judge a book

Over the last few days I have covered the basics of how we found out Emmie wasn't a typical 8 year old. Now, how does CAPD affect our daily life? That's a question that I can't answer in just one post. You see, on the outside, Emmie IS the typical 8 year old. She is tall, long brown hair (which drives me batty!), big eyes, silly smile, and luckily at the moment her clothing matches! She can be found digging in the dirt, dancing in the bathtub, or coloring a new picture to send to Daddy. If you were to run into her at school or stop by for a glass of tea, you would never know Emmie was different. You know the old saying, "Never judge a book by it's cover"? Well, that saying ring true when you meet a child with CAPD. On the inside, Emmie is a multitude of wonder. She's healthy (although she is allergic to banana boat sunscreen, four types of grass, a few trees, and dogs) and a happy-go-lucky kind of kid. But there are also wires that get crossed and certain things that I have to do on a daily basis to ensure I am providing the proper language environment for her development. Take this example of Emmie, mind you this was only about 10 minutes in our day, but it will give you a general idea.

We sat on the couch together watching the Tinkerbell movie. Carrington was in her room with the phone attached to her ear and Jensen was building a new Lego creation. There is a scene in the movie where they show fairy dust, a lot of it! Our conversation went like this:

Emmie: Look! It's fairy dust!
Mom: Oh wow, that is a lot of fairy dust.
Emmie: We should get some.
Mom: What would you do with fairy dust?
Emmie: I would fly.
Mom: Is that what fairies do with it? Hmmm.....Maybe we should make some fairy dust so we can sprinkle it on your fairies that you got for your birthday. I bet they would love to fly!
No response.....
Mom: Can we make them fly?
Emmie: Sure, can I make an apple one?
Mom: An apple what? Fairy Dust?
Emmie: An apple pie.
Mom: An apple pie? What are you talking about.
Emmie: You said we should make some pie.
Mom: No, I said we should make some fairy dust.
Emmie: Oh. Can I have pie?
Mom: We don't have pie.
Emmie: Well, rats!

I know exactly where and how our conversation went wrong. I should have used smaller sentences and she should have been looking at me when I was talking. Her auditory memory is less that nine words long, meaning after about the ninth word, I lose her. She also has trouble remembering words or sentences if there is a pause of longer than 15 seconds. So, when I paused then told her we should make our own fairy dust, she lost the part about flying all together. Often, you will find her looking at your mouth and how the words are formed while you are talking. While she is looking at your mouth, you will notice two things. One, her mouth and tongue are slightly moving trying to mimic the words you are creating. And two, she is subvocalizing certain words. Meaning, she is saying them out loud (often low enough where only she can hear it) to help keep them in her working memory. She didn't do any of this during this conversation because I wasn't facing her. Now, would you know that if you looked at her playing with her barbie dolls? No, her cover says she is a typical 8 year old girl dressing her dolls and making them walk and talk. It's what's inside the book that you have to look out for :) This girl is a complicated read!

Later folks,

Monday, July 27, 2009

You are moving where?

Right after Christmas we began preparing for our move back to Germany. We had received orders for a small NATO base on the border of Germany and the Netherlands. Of course as a mom of three school age children, my first and only goal was to ensure the school was "up to par" for all three of my children. They each have their own strengths and personalities. Carrington is an all around A student, she loves to learn, kicks butt at math and science (although she will never admit it!) and plays the clarinet. Jensen is a great student, loves math and any new biography, and wants to play baseball. Then there's Emmie, which is the artsy kid in the family, but also needs the extra educational support. So, I emailed the only American elementary school that we are allowed to attend. There are actually two American elementary schools in the area however time and time again I was told that the Air Force children attend only one of those schools, the Army kids got the other. I'm not sure their reasoning and went all the way through the District and never received an answer. Anyway, I emailed the school and waited. The Resource Specialist there responded with a simple, "we can handle your daughter's issues". The next few months our emails went back and forth, me sending a list of questions and her responding with the typical "we can support you". Never once did she answer a question or give me information on what programs they had to offer. She even lost part of the IEP that was sent to her.

During this time, we made the decision for my husband to travel ahead of us and me and the kids would stick it out in California until school let out. My husband made every attempt to go to the school and give the lady another copy of the IEP, a copy of the 16 page report from Dr. Swain, and another copy of the questions I had. When he didn't receive a response from her, he went to the Principal. The Principal listened to him and said he would provide a list of their available programs. A few weeks later, the Principal handed him a form letter containing no real "information". It was then I knew I would not send my children to that school. Period.

My husband applied for an EFMP reassignment, in the hopes the Air Force would find a location for us that could support the educational needs of our child. He landed in Germany in March and it wasn't until the first week in July that we received an answer. They were going to send us to Washington. Okay, I can live with that. Schools are great, area is nice, I'm good with Washington. Two days later, we were informed that Washington was off the table and we would be staying in California. My husband will be returning in August.

I'm not exactly sure how this process takes place. How the Air Force decides what is best for our child based on what is written on a piece of paper? Obviously the system is broken as we have been through more hassle than help in the last few months. Now, we are stuck in California. A place where the budget is being thrown down the toilet. Where education is as important as the trash on the side of the road. Money keeps getting cut, classroom sizes are getting bigger, teachers are getting laid off. In the upcoming school year, I am scared to death to send my child to school. I am afraid she will not have what she needs with all the cuts being made. She is a special needs child but she also is in a traditional classroom setting. I can not imagine her in a classroom with 24 other children, no health, no PE, no break from the day to day auditory overload. My fingers are crossed, but the Air Force certainly consider the family in this instance. I hope the EFMP process is more helpful to other families.

More later as dinner is calling,

Sunday, July 26, 2009

Finally, an answer

Remember when I told you my first meeting with the Student Study Team the Psychologist used the word "auditory processing" difficulties? For some reason that term, even though I had no clue what it meant, stayed with me. I came home and typed in any form of the word possible and let me tell you Google has a million plus links for "auditory processing"! Wow! It was insanely overwhelming, but I finally found the National Institute of Deafness and Other Communication Disorders. This site described a disorder known as Central Auditory Processing Disorder (CAPD) or Central Deafness. I read over the description and printed it for future reference. I finally had what I hoped was an answer. After all, education begins when you can put a name to it. I called my step-mom and read the symptoms to her over the phone (I would have called my husband but he was in the middle of a war zone in Afghanistan!). It was almost as if the description was written JUST for Emmie. She was having trouble paying attention to and remembering information presented orally, carrying out multi step directions, poor listening skills, needed more time to process information, had language difficulty (e.g., they confuse syllable sequences and have problems developing vocabulary and understanding language) and, have difficulty with reading, comprehension, spelling, and vocabulary. Of course I spoke with the Superwomen of the Student Study Team and they requested I have a hearing screening done just to ensure there wasn't any "hearing related" issues. We had one performed at a local school equipped with a sound proof booth and it was concluded that Emmie had normal hearing.

There is no cure for CAPD. I spent the next few months trying to help Emmie on my own. Trying to make things "click". Finally I realized we couldn't get the help we needed until we had the "label" on her medical record. I made an appointment with her Pediatrician in the hopes of getting a referral to an Audiologist for testing. We are a military family, so when you make a doctor's appointment the odds of seeing the same doctor twice has worse odds than playing the lottery and winning a fortune. The first doctor we saw was actually the Flight Commander for the Pediatric Flight. I explained the situation, she gave me the "oh yeah, I understand" nod and claimed she would place a referral in the system. A few weeks later, I received a referral for a pure-tone hearing test x 3. Through my research I had learned that a child with CAPD isn't deaf, they hear you fine, the problem becomes when they process what they heard...wires get crossed! I went ahead and scheduled one pure tone hearing test at the Audiologist we were referred to, again to ensure there were no hearing related issues. And again, her hearing screening was within normal range. Back and forth to the Pediatrician over the following months only gave us a total of 9 hearing screening referrals. But mixed in with one pure-tone screening referral was a referral for a place called The Listening Center in Walnut Creek, California. I jumped at the chance to finally get an answer as this Center had the ability to test for CAPD. I visited our insurance company Tri-Care and was assured the $450 evaluation was covered. I scheduled an appointment for the screening.

After scheduling the appointment, I was told the billing code on the referral was incorrect. Tri-Care had written a billing code for a consult and the Center provided free consults, so we needed a code for the actual evaluation. Again, back and forth with the insurance company only led to conclusion. Anytime I said the word "auditory processing disorder" and received that nod of understanding, the person had no clue! The Tri-Care nurse actually told me, as I sat there trying to find a way to get them to understand, that when they saw the work "auditory" they automatically processed every one of her referrals as a hearing disorder. That was the reason for all the pure-tone hearing screening referrals. I wanted to slap them in the forehead and throw a V8 in their face!

So, I paid the $450 myself to have the screening done. I checked Emmie out of school and drove her the hour plus way to Walnut Creek where we met Dr. Swain. Dr. Swain is a petite woman with beautiful blond hair and she has such a kind demeanor that Emmie didn't hesitate going into the room with her. Two hours later, my little girl emerged visually exhausted. She went into the playroom and curled up in a hanging hammock swing while I met with Dr. Swain. As I walked in her office and sat down the first thing out of her mouth was "Your daughter certainly has auditory processing disorder". I cried. Finally someone believed me, finally we had that rubber stamp of approval, and finally we could start to help her. The next 45 minutes was spent explaining what areas Emmie struggled, her basic test scores, and examples of how she answered some questions. A full 16 page report arrived 6 weeks later, but not before the Air Force decided we needed to move to a remote location overseas where Emmie would not receive the help she needed. More on that later as I am still boggled by how they came to that conclusion.

Anyway, bottom line, we had a name. We had a starting point for Emmie. I now felt like no one could stop her! It's silly how it took all those months to get someone to test her and tell us that this was real.

Tomorrow ya'll,

Saturday, July 25, 2009

Second grade

The summer before second grade was a busy one. Promoting Emmie or having her repeat first grade was constantly on my mind. I didn't want to make the wrong decision. In my mind, I felt if I made the wrong decision now it would affect her for the rest of her life.

Luckily, our Principal was understanding. She was new to us and began her term during the summer before Emmie's second grade year. She allowed me to hold a spot in both grades with the option to have her tested to ensure she met second grade standards before school began. The summer was spent with sight words, basic reading concepts, math facts, and so much more. My poor child worked her butt off!

Another summertime hurdle was I had to get a second grade teacher to agree to take her as a student based on her test scores. I thought it was going to be hard. After all, a child is so much more than what is written on a test score. The test didn't show her personality, her caring heart, her creative ways. The test just showed she was behind the other kids. That she couldn't read even basic sentences on her own, and first grade sight words were still too challenging. My son had a wonderful teacher for his first grade year and the same teacher moved up and also taught him second grade. She was still a second grade teacher and for this blog we'll call her Mrs. Paris (Emmie picked the names!). It is hard for me to explain to you how wonderful Mrs. Paris is. There are simply no words that I could write that would paint the picture of how beautiful of a person and how special of a teacher she is. There is something special in her and she will always be a part of our lives. Mrs. Paris looked over the test scores and having known Emmie was able to look past the bleak numbers and writing samples. She was honest in telling me Emmie would have to work twice as hard, but she had hope, and agreed to be Emmie's second grade teacher if we chose to promote her. HOPE! Sometimes that's all a parent needs when they are dealing with learning difficulties is someone to give them hope.

We worked and worked over the summer and a week before school began Emmie was instructed to be at the school in the afternoon for testing. Her Title I teacher would be giving the test. When we arrived, the Principal met us at the door and Ms. Title I whisked Emmie away to the library. Now what? My daughter's future hung in the balance and I'm left standing in the hall. Okay, it wasn't her "future" but in that moment it felt like it. I walked around and in the staff room found the group of custodians. What lovely people they are! They certainly made me feel comfortable and less anxious about Emmie's test. I don't think I ever thanked them for taking a moment out of their work day to chat with me, I don't think they realized how important it was, at that moment, for them to be there. Time seemed to past at a snails pace, and finally Emmie emerged standing in the doorway. "Did I do good?", she asked as we walked to the van. "Of course you did!", I proclaimed as I handed her a package of gummi bears from my purse that I purchased just for this occasion. I have never wanted her to feel as though she has failed at anything when it comes to her education. I know it's important to teach your children about failure and trust me, we have all felt our share. But I also think it's important to judge each child on their own scale of success. This test wasn't a pass or fail, it was a "measure of her progress" and in my eyes her determination and courage through her work was better than any gold star. The test showed she did make progress and we were on our way to second grade.

Emmie began the year with Mrs. Paris. I still feel the year went to fast! She continued to not only struggle, but also make progress. Her math skills continued to strengthen. Her writing improved. And we also finally figured out ways to help Emmie learn, ways to use her skills to help her soar, ways to make reading fun! It was during this year Emmie read her first book! It was a "Biscuit" book and she ended up reading every one her teacher and the library had. She had found a "voice" and confidence! Mrs. Paris was so encouraging and I feel she made the most difference in her little life so far. I am proud to say that Emmie made 60 points from the Accelerated Reader program! Second grade was the best thing that happened to us and it wouldn't have been possible without Mrs. Paris and her Team (her resource, title I, speech therapist, and psychologist became known as her Team). We also received a specific diagnosis as well (more on that tomorrow).

The most important part of second grade was Emmie had confidence. That confidence allowed her to try to sound out more words, try to answer questions, just TRY in general. And sometimes the courage to try is worth more than the ability to do.

Until tomorrow ya'll,

Friday, July 24, 2009

R is for Rabbit

Emmie started kindergarten at Center Elementary. On her first day she was dressed in a multi colored skirt and purple shirt and carried a backpack that she picked out herself. Kindergarten was only a half day and she felt excited that her brother was in the first grade classroom next door. She showed some struggles through the year. She had problems memorizing letter sounds, sound blending, and overall phonics. Her teacher, who also taught my son and I loved her dearly, had complications through the year with her pregnancy and half way through the year we found more often than not a substitute would be present. Emmie's struggles could very easily be chalked up to the lack of stability in school. At home there were no changes, every afternoon we would open her folder and work on the homework provided. On "Math" days, homework was a breeze and she could easily could the butterflies on the paper or add the blocks. On days where more reading skills were required, it would take us hours to complete a simply "fill in the blank" worksheet. Towards the end of the year, she was labeled as "at risk for retention". After many tears and headaches, I decided it would be best to promote her to first grade.

Over the summer, we worked on her phonics. I made flash cards, puppets, and even turned the kitchen cabinets into "phonic soup". The repetition seemed to help her and I felt we were making progress. Emmie's first grade teacher had moved down from 6th grade. She was a gentle lady and I looked forward to her patience and excitement! First grade wasn't any different than kindergarten. The struggles were still present, despite the stability in the teacher. Emmie was certainly a smart cookie, finding ways to draw attention from the fact she hadn't completed her work. She would offer to help the teacher, offer to take care of the recycling, or offer to help another student. What worried us the most about Emmie was she wasn't able to remember or recall things easily. One minute, she would know her spelling words perfectly. But a few minutes later, or even the next day, it was almost as if they were completely erased from her memory. She had no recollection of them and we would have to start over again. She was enrolled in Title I services with the hopes of helping her reading skills. Some days I felt like it was helping, others I just felt like she was being pulled from class and making zero progress. Finally, it was requested that a Student Study Team review and meet with Emmie.

The Student Study Team consisted of three of the most amazing women, a Resource Specialist, Speech Therapist, and School Psychologist. Emmie would like to come up with names for these superheroes, but right now she's sleeping :) This team reviewed Emmie's classwork, met with her teacher and me, and even met with Emmie. After some testing, it was concluded that Emmie had a "specific learning disability" and would be receiving speech and language assistance, as well as Resource through her Individualized Education Plan (IEP). She would also continue her Title I services. But something the School Psychologist said during my initial IEP meeting struck a nerve with me. She noted during her testing that Emmie had auditory processing difficulties. This entire process was new to me, IEPs, Resource, was completely overwhelming and on top of it all my husband was deployed. I can remember leaving my first IEP and crying all the way home. These beautiful women were so patient and so interested in doing their best to help my daughter but I couldn't help feeling like a failure because I didn't know where to begin. Emmie, of course, was labeled at "risk for retention".

Tomorrow, I'll tell you about the summer and about Second Grade. Second Grade, which Emmie just completed, was a huge turning point for me and Emmie's education. I can't wait to share it with you.

Until Saturday,

P.S.-Thank you for your patience as I give you some background on how we ended up at this point in our path!

Thursday, July 23, 2009

As an infant....

Emmie was on April 10th in Landstuhl, Germany. There were no pregnancy complications, other than the fact we moved overseas in my 7 month, and no delivery complications (labor was only 13 minutes). She was 6 pounds and 7 ozs and the tiniest little girl I had ever seen. When Emmie was a newborn, she didn't sleep. I know parents say that, but trust me from the time she was born until she was about a year old, she didn't sleep and all she did was cry! We lived on the second story of a old German apartment with hard wood floors. I can remember on more than one occasion laying in the floor with her. We would lay blankets down and she would snuggle next to me. One way to soothe her was to put some sort of music on that, believe it or not, had a lot of bass. My husband enjoyed Enimen from time to time, so I would put in the cd on low, and in the floor we would lay where she was able to feel the vibrations. Just one of those quirks of our new addition. After all, ever child is different. She was breastfed and never once had a bottle or pacifier. At 8 months, she was diagnosed with Raynaud's syndrome, a disease that affects the blood vessels. Basically, her hands and feet would turn blue for no apparent reason. It actually runs in my husband's family, so again, no reason to be alarmed that our child was different. She just needed warm socks more often! No childhood ear infections and other than a common cold from time to time, she was the typical newborn. The toddler years were no different. As soon as she could hold a pencil, she was scribbling. She also seemed to lean more towards the art geared activities, finding joy in finger paints, smearing yogurt everywhere, or picking the perfect crayon. She played with baby dolls and her siblings. She crawled, babbled, and walked just like any other kid. She seemed to outgrow the Raynaud's in her toddler years, although even today she tends to get colder before anyone else and her little hands are typically ice cubes but no blue fingers! Her toddler time brought on a new illness, Vesicoureteral Reflux or VUR. Her VUR was a grade 3 out of 5, bilateral. This meant when her kidney's would empty to the bladder, some of the urine would not completely empty and would reverse back into her kidney's. We contemplated surgery, but the Urologist and I both decided she was young and we could stick it out and pray she would outgrow it. A few hospitals visits, overnight stays, and VCUG's later she did outgrow this as well with little scar tissue in her kidneys.

Overall, Emmie was the typical child. A move to California began the days of Kindergarten....then I began to feel like my child wasn't typical. There was certainly something special about her!

Wednesday, July 22, 2009

Technical stuff first

Before we take off on this road together, make yourself a snack and find a comfortable chair because it is important for you to understand what Central Auditory Processing Disorder (CAPD) is. The technical stuff comes first, and as our journey takes flight you will come to understand more about CAPD and about it affects our daily life.

Central Auditory Processing Disorder is to the ear as dyslexia is to the eye. Just as dyslexics can see the words, but some letters get jumbled in their brains, those with CAPD can hear, but their brains aren't able to process some sounds. (Carter, Dartmouth Medicine, 2000)

The explanation by the American Speech-Language-Hearing Association is as follows: CAPD is a sensory processing deficit that commonly impacts listening, spoken language comprehension and learning. CAPD is the inability or decreased ability to attend to, discriminate among or between, recognize, or understand auditory information. Most language is learned by listening. In order to learn, a student must be able to attend to, listen to, and separate important speech from all the other noises at school and home. When auditory skills are weak the student may experience auditory overload. This make learning more challenging and sometimes too difficult without special assistance.

All of this seems hard for anyone to process! There is more to come on the definition of CAPD, how Emmie was diagnosed, and what happens in our day to day life with CAPD. You must know I don't sugar coat, and some days are better than others. Don't worry, I'll warn you first!

Thanks ya'll,