I need to carry PECS!

So, since my last entry, we have had part one of a new Speech and Language Evaluation. I say part one because when Tri-West processed the eval, they only approved half of it! What? So, this coming Wednesday, I will be paying for the rest of the evaluation. Tri-West has denied our request for speech therapy. Go figure. I am hopeful that this new evaluation will provide us with another way to show Tri-West that they NEED to cover, at least partially, speech therapy for CAPD. Sometimes it feels like I'm the only one in the world that GETS IT when it comes to CAPD and the treatment that she needs. I know there are more people out there, hence the release of a new book called "The Sound of Hope"...HELP, throw me a preserver....someone.

We have also had our last IEP for this school year. Some of her goals were updated and I have to admit she is struggling more than a lot of people see. But that's okay. The summer provides me the uninterrupted opportunity to help maintain what she learned throughout the school year.

Today I was reminded, again, of what Emmie's abilities are. She has been sick for the last few weeks. At first, I figured it was her allergies..she has horrible allergies. I really think she is allergic to California. But after a few days of medications, no change. So, hmm..maybe a cold. A week and a half of cold meds and nothing. We took her to the Pediatrician on Friday who assured us it was a cold. The family hasn't been sleeping because Emmie wakes us up with her coughing and she's just miserable. Today, I took her to the ER. Her heart rate was high, pulse ox was low and guess what? She has bronchitis. Just a cold, huh? But, that's not the part that frustrates me..although I think if a Pediatrician can't recognize a child with obvious problems...well, where did she get her medical degree? Anyway, the nurses, tech, and doctor all speak to Emmie like they would anyone else. Emmie isn't hearing most of what they say and can't answer fully because she didn't process what they just said to her! I think when someone has a language disorder, it should somehow come up in their medical file! A little pop up of some sort when they log in to say "Language Disorder" so they know to speak slowly, rephrase, or even use pictures! I don't think that's too much to ask a medical facility. I guess I need to carry PECS everywhere. We left four hours later with two medications. She's sleeping right now and I should use this opportunity for a nap!

News

I spoke too soon yesterday, although we have some news, it still isn't good news. I heard from the Case Manager today. He said he spoke to the Pediatrician and they put in a referral for speech therapy for the Aptitude Habiliation Service program with the speech therapist I have requested. However, we also have a roadblock. The Aptitude Service is not listed under our insurance company. There are two speech therapist listed under our insurance company. Tri-West has a fifty mile radius, so if there is a speech therapist within that fifty miles..that is who we will see. There are two problems with this. First, out of the two offices listed only one has experience and resources to handle CAPD. Second, the Tri-West website lists these offices as "49.99" miles away. Nice try, Tri-West. They are actually OVER sixty miles away from the base! So, I certainly don't have my hopes up on getting this referral approved. The waiting game continues....

No news is good news?

Emmie's binder of information has been turned over to the Pediatric Case Manager. I included information on CAPD, emails from a speech therapist who wants to work with Em, IEP, and all of her evaluations, tests, and results. Now we play the big fat waiting game. I am beyond frustrated with the waiting games. I have to prove my daughter needs assistance. I feel like I'm always fighting. And with each fight, I fight it alone. We have no one on our side. I have heard from the Case Manager once, to ask a few questions. Other than that, no news is good news, right?

On another note, I think we are going to have to go back to the intensive multi-sensory work with Emmie. She was making great progress, however, we are on that wonderful roller coaster and right now it's all up hill. She's struggling and we need to come up with a new plan, maybe hop on a different ride. Maybe this time I should wear a helmet.

It's her birthday!

Emmalyn celebrated her 9th birthday today. For her birthday, she wanted clothes for Dexter, the quirky Koala. Of course she wanted other things, her list was like a novel, but number one was clothes for the poor naked Koala. As you can see, Dexter is now sporting a knit sweater and matching cap. He's a happy little fellow. Dexter is an unusual friend. He apparently loves to travel and often, during the day, goes on little trips around the house. Emmie will leave him on odd places for his "adventures." He has traveled in the closet, in my computer bag, on the stair railing, and under pillows. He's very worldly. For her birthday, she also wanted to go to lunch. She choose Hometown Buffet because she could pick whatever she wanted, plus they had ice cream! Off to lunch we went, complete with Dexter in her bag. She ate so much she said if we didn't leave at this very moment, "I am going to explode and you'll have to clean me off the walls." Yeah, she's weird :) She had chicken and jello, fries and pizza, ice cream and a cupcake. And, of course, Icee's! She drank nearly three of them! You only turn 9 once in your life after all.

I think, overall, she has had a nice birthday. She got things she wanted, including a trampoline, ball for her zhu zhu pet, a wizards blanket, purse and hat from Claires, and a new design sticker for her wall. And of course, she got to eat whatever she wants...which never happens when Mom's around!

And I know you are thinking..what in the world is she wearing? Well, if you know Emmie, then you know she wears whatever is comfortable. She doesn't much care about it matching. This is actually her third outfit of the day. She started with a lovely pink dress, complete with purple pj pants and little mermaid socks. Outfit two was cammo capris, a brown shirt, and zebra print socks (which she wore to lunch). Now, she is wearing a brown shirt, blue plaid pants, a polka dot jacket, the same zebra socks, and black shoes. She has her own style :)

So...Happy Birthday Em! I'm so glad we didn't have to clean you off the walls :)

Frustrated.

I'm frustrated to say the least. A friend referred me to the Pediatric Case Manager at our hospital. I had heard that he works hard to help our children get what they need from the insurance company, community, and school. I called him today. Although he seems to be a nice gentleman and really seems to want to help, he was honest. He said not to get my hopes up on getting Speech Therapy covered for Emmie because CAPD is a hard one to get our insurance company to recognize. I appreciate his honesty, but I'm so frustrated. I don't ask a lot from our medical facility and insurance. I'm not a problem child! My children (knock on wood) are rarely sick and require treatment, usually we only need a once a year check up. We don't use off base providers or require the insurance company to pay for anything off base. My daughter has a known disability and I don't understand why it's so hard to get her speech therapy! I'm not asking the insurance company to fully foot the bill, but geez people.

So, now I am suppose to submit all the paperwork I have on Emmie to this Case Manager and see what happens. I can't help but feel like it's a waste of time. I don't think I'm being unrealistic, asking for assistance in paying for speech therapy. I know the school is doing the best they can, but let's face it, with budget cuts and higher class sizes...she's wasting her time by being pulled out of class. We should all be in it for the children, and yet, California's government could really care less. It's about money.

I am just so damn frustrated with the Air Force, the insurance company, Doug's command, and the school system. I don't want an easy fix, I just want ONE person on our side!

In 15 plus years, our children will be the ones running this country. We should be scared.

Short and sweet

The winds are blowing in California, as we welcome Spring with blooming flowers and trees. A lot has happened since my last post to you. First, I passed my No Child Left Behind exam to become a Para educator. I haven't had any sub jobs yet, but am very excited to learn more about the field including ways that I can incorporate learning modalities at home too.

Tomorrow Doug has an important meeting, which I can't tell you about yet. Let's just say that we aren't happy and hopefully we will have some closure soon.

Anyway, we are continuing our program at home and hoping everyday for more awareness of Central Auditory Processing Disorder. CAPD is real, people. It affects so many children and so many go misdiagnosed. Em is making progress, but I know in my heart that she could be further along that she is. So many budget cuts and the people that are in charge of those very cuts have no idea how it's affecting the children. These children, in ten plus years, will be the ones running this country. We should be scared. They are not getting the education they need and deserve.

Test

I was hoping to get new photos of the kids today, but I will admit we were super lazy today and it was great! I am so overwhelmed lately and we all needed a day of nothing.

Time is going by super fast and before you know it the time will come for state testing. I do not like state testing, although I understand the need for it. I mean, you have to know where students across the board are ranking in order to ensure the educational system is "working". But, I always think that I know my children and I know there is no test score on a piece of colored paper that is going to change that. This year, I am excited about the testing. See, my oldest has never had a problem with test taking. The bar graph always exceeds the above average category. My son, ha, could really care less and feels it's just more work and his teacher is out to get him and that is why she is making them take this never ending test. His little bar graph is also usually high. Then there is Emmie, her bar graph is sometimes barely a bar. Test taking is overwhelming for her. It's too much all at once and it drains her.

This year, however, her wonderful Superwoman of a Resource Specialist approached me about a different test. Same basic grade level material, just set up a little different! I am so excited to see how she goes this year! Usually, I open the test scores when the kids are not around, read them, and then tuck them away. We don't discuss them or really put any sort of weight on them. They are what they are and certainly not a test to show me my child! Anyway, this test is called the California Modified Assessment. Larger fonts, shorter passages, extra white space so it's not overwhelming...the whole design is actually something you can tell someone with knowledge of how a special needs child thinks put together! Check it out and let me know what you think.

http://www.cde.ca.gov/be/ag/ag/yr07/documents/bluenov07item14a6.pdf

Later taters!