tag:blogger.com,1999:blog-25890266471663057412024-02-07T06:12:22.687-08:00My life in huh?Our journey through the curious case of Auditory Processing DisorderUnknownnoreply@blogger.comBlogger99125tag:blogger.com,1999:blog-2589026647166305741.post-32049854228548562652012-02-03T07:26:00.000-08:002012-02-03T07:31:41.057-08:00Can I get an Amen?I think a blog update is in order, maybe change the font or photo. Who knows? I guess I should update it since we are now going through a curious case of CAPD and Autism Spectrum Disorder. Sprinkle it with rainbow sprinkles and it's a party, huh?<br /><br />I have this friend named Holly. She's the most remarkable mother, wife, and friend. I can honestly say there was some higher power that aligned everything just right to put her in my life. She has been supportive and loving and always gives me one heck of a laugh through our process with Em. She recently moved to Virginia (sad face) and has an amazing community for her special needs children. One of her doctors wrote this and I had to share it. "Here's the main problem with the proposed re-definition of autism in DSM-V: autism shouldn't even be in DSM-V. This is the diagnostic manual used by psychiatrists to define psychiatric disorders. Autism is not a psychiatric disorder. It is a systemic disorder that affects the brain as well as other organ systems including the gastrointestinal system and the immune system. Don't take my word for it. Ask Dr. Martha Herbert, pediatric neurologist at Harvard and Mass General. Defining autism according to criteria established by psychiatrists is nothing more than a historical relic. Psychiatrists are infrequently involved in the evaluation and treatment of individuals with autism, unless of course that individual has a co-existing psychiatric disorder. Much more often, the evaluation and treatment of individuals with autism is managed by neurologists, developmental pediatricians, and yes, primary care physicians. We should be the ones who establish the diagnostic criteria, not the American Psychiatric Association."<br /><br />No other words needed...other than AMEN!!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2589026647166305741.post-35565031840122724632012-01-31T15:31:00.000-08:002012-01-31T15:41:54.307-08:00Knock Knock..anyone home?I haven't drown yet. Some days it feels like I have, some days a friend throws a life vest, and some days I feel like I'm walking on water. Yep, it's a roller coaster ride over here! <br /><br />I'm almost afraid to admit how long it has been since I have posted on here. But then today, a new friend mentioned she read my blog. How embarassing that I haven't posted since the middle of last year. Hey, at least there is a reader though right? <br /><br />Our journey began with Central Auditory Processing Disorder. It was a journey we started with no map or snacks. It was one heck of a trip. A fork was in the road and Emmie was diagnosied on the autism spectrum last year. Now our bumpy journey is like a jerky train ride. <br /><br />I have so much to say about the autism spectrum, about our daughter and her sensory issues, and about our life in general. For now, I have to go get her out of the kitchen floor where she is currently standing on her head singing. <br /><br />My life in huh is now my life of everyday surprises.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2589026647166305741.post-66945140812594191562011-06-24T09:09:00.000-07:002011-06-26T20:00:11.935-07:00SubtitlesAs many of you know, we are on a never ending waiting list for a Neuro Psych eval. I say never ending because each time I call Sutter to follow up on where we are on the waiting list, we seem to be pushed back a few months. Now, they tell us it'll be September. Nice huh?<br /><br />Enter the special needs playgroup~a group of moms with children with various needs that come together during the week so the kids can have some social interaction time and the moms can talk to someone other than Elmo. In Elmo's defense, he is obviously a great talker but sometimes there's only so much you can take if you are over the age of 5! Anyway, one of the moms recommended another doctor who not only would do the Neuro Psych eval she would also file all the paperwork with our insurance company. I wouldn't have to go see the moron pediatrician for a referral! SCORE! I called her and it seems she can see Emmie in JULY!!! The doctor sent me the intake forms and it took me nearly three hours to complete! But, the "Book of Emmie" is now in the mail to her and we are all ready for a July eval. I seriously can not tell you how excited we are! <br /><br />Lately, Emmie has been having some real off days. A few days ago we went to the library to pick out some summer reading books and the kids picked up movies. Emmie loves watching movies! She came home and watched her movie in her room. Later that night at bedtime, she was watching the same movie, this time with subtitles. I thought maybe she turned them on and didn't know how to turn them off. So, I asked her. Nope, she said she couldn't hear what the movie was saying if they mumbled or moved a lot. I asked if she could read what the words said and of course, not really. Now, anytime she watches a movie she watches with subtitles. This is a new development and although she has had several normal hearing screenings, we will be making her an appointment for another one just to be sure. I'm hopeful this Neuro Psych eval will shed some light on what in the world is going on!!! <br /><br />Anyway, we are going on vacation soon! YAY! New post on traveling soon :)Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2589026647166305741.post-4142061573474243612011-06-13T23:03:00.000-07:002011-06-13T23:11:06.006-07:00A day in the life..<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0Nycyo4GTCPibw96p9tRrb_YKxZJiXQKKwJ5Y8yRqbaYV_oi83f7K08gc6LA4O76umJvJzHh7mSnDjNz-PoHxVtRJHYaA0aWPZIobjcrdDMUrzdpL3Sb-fUShL7BjQIY4aKrse9czGNfd/s1600/emmie6.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0Nycyo4GTCPibw96p9tRrb_YKxZJiXQKKwJ5Y8yRqbaYV_oi83f7K08gc6LA4O76umJvJzHh7mSnDjNz-PoHxVtRJHYaA0aWPZIobjcrdDMUrzdpL3Sb-fUShL7BjQIY4aKrse9czGNfd/s320/emmie6.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5617954058316302178" /></a><br />As much as I say I'll blog regularly, it just doesn't happen. I have really good intentions, but life somehow, always gets in the way. <br /><br />Emmie had her first sleep over, well first one without her big sister there, over the weekend. I can not tell you how excited she was. I mean, the sleep over was on Saturday and she was packed on Tuesday. I, of course, had to re-pack her because I think she thought she was going for a year! I took her to her friends house around 5 pm and saw her around noon the next day. Her friend had a sporting event and I came along to cheer her on. After, we had lunch then swam at her house for a few hours. Although Emmie got 8 hours of sleep at the sleepover, she slept an entire 15 hours last night. Any sort of change or over stimulation like going to a sleepover completely and totally exhausts her. She had a blast though and I know we'll be having many more sleepovers in the future, but it breaks my heart to see her so tired over the situation. There is nothing that could have been done...you know, it's just part of having a special need. <br /><br />Which brings me to how our night ended. Emmie came down from her bath sporting white and blue capri pants and a pink and white striped shirt. She always chooses comfort over fashion and could simply care less if she matched. I rolled my oldest daughter's hair with her dad's dress socks. Yes, you read that right! Thank you YouTube! LOL And had one sock left over. Emmie decided it MUST go with her outfit and put on the one sock. I wanted to take her picture, however asking her to take her picture lead to a complete meltdown. Another day in the life I suppose....Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2589026647166305741.post-88506232473253228172011-05-21T16:05:00.001-07:002011-05-21T16:13:15.691-07:00Hello!I could write a novel over everything that has happened over the last few months. But, if I don't have time to really update here I certainly don't have time to write a novel! One day..perhaps.<br /><br />Emmie has had a rough school year and sadly we have NO idea what we are going to do next year. Education in California is just plain awful. She's struggling in so many areas, but those that make the laws seem to think shoving more kids in a classroom and cutting the school year by 30 days is the answer. <br /><br />We have also had two trips to the Neurologist and an EEG since I last updated. We think she's having absence seizures, although the EEG was normal. It actually wasn't a clear picture of her day because the process was so exhausting for her that she slept the next 24 hours while she was wearing it! We are currently waiting 8 months for a NeuroPsych evaluation before an MRI can be ordered. I have spent the last few months thinking over and over that she was misdiagnosed in the first place. But thanks to the awful Pediatrician we have, no one will listen.<br /><br />Finally, any change in her schedule now makes her ill. For example, this morning I had to take her older sister to school at 5:45 am for a Band event. I woke her and her brother up because my husband is on night shift. We came home and the kids went back to bed. But because this was a change in her routine, she has been sleeping all day. Right now, she's curled up under a blanket with her koala pillow pet sound asleep. She woke up long enough to run to the store to purchase a birthday gift. But, she spent the time huddled inside the shopping cart. <br /><br />I'm not sure what the summer is going to bring us. But, I'm pushing for the lazy Pediatrician to do more. After all, the only thing I need her to do is write a referral..she doesn't even have to talk to my child. Oh yeah, she doesn't anyway!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2589026647166305741.post-65683890129017166392011-01-28T23:06:00.000-08:002011-01-28T23:07:36.121-08:00I didn't forget you..So, you are thinking, "wow, she totally forgot about this little blog!" I promise I didn't. I will update this weekend with all the adventures of life with Emmie. Trust me folks...it's never a boring trip!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2589026647166305741.post-85418679132353660072010-09-22T20:36:00.000-07:002010-09-22T20:38:04.170-07:00No wordsI have sat here for over an hour trying to figure out the "nice" way to begin this post. I can't find it in me to say anything positive at this time. We have had some major regression, frustration, and little understanding. Major.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2589026647166305741.post-66378125869651280032010-08-30T23:11:00.001-07:002010-08-30T23:18:07.993-07:00The more later...I am on another roller coaster ride. Tri-Care approved the 50 visits. However, what they approved was 50 twenty minutes visits. Em's speech therapist has recommended 45 minutes visits 2-3 times a week. Tri-Care will not allow us to bill two visits at a time and have a 40 minute instead of 20 minute visit. We are trying to figure out what our plan Y is...I think we have been through the rest of the letters of the alphabet! <br /><br />We are in full swing at a new school. I'm not sure what to think yet. It's educating a new staff on Emmie's disorder and it's overwhelming for me. The Resource Specialist and Speech Therapist have experience with CAPD, which is a bonus for us. The classroom teacher, however, does not. I am really trying to be patient. She is a very nice lady and seems to be willing to learn how to teach Em, but I am so use to people who already know her. We'll see how it plays out. We do have a plan B for this one!Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-2589026647166305741.post-56187754762454858792010-08-18T12:10:00.001-07:002010-08-18T12:13:19.237-07:00More coming...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUfbHvLlZnkKBMSEEVrENe6c1iFfYEGhv0wlmVYrIxi5jkgxrR1IlXXDSwb4_DL3B9oDQJrbxViWfqqfvOOQoNOoc3IpvV-e3FFJvEbT_X4rK-cEsJaRYV7t-W9QWDxMOnEpQsGpaP6ZNX/s1600/008.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUfbHvLlZnkKBMSEEVrENe6c1iFfYEGhv0wlmVYrIxi5jkgxrR1IlXXDSwb4_DL3B9oDQJrbxViWfqqfvOOQoNOoc3IpvV-e3FFJvEbT_X4rK-cEsJaRYV7t-W9QWDxMOnEpQsGpaP6ZNX/s320/008.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5506830069410479250" /></a><br />I have so much to tell you. First, we did finally hear from Tri-Care. We have been approved for 50 therapy visits. It amazes me that it took this long. The only reason we were approved now instead of a year ago is in Emmie's latest report are the words "receptive language"...are you freaking kidding me? I think as a society we are getting dumber with each passing day. Now, we are working out the logistics of the visits and she'll be starting therapy soon! Yay!<br /><br />We decided to move Emmie and Jensen to Travis Elementary. I'm not thrilled with that decision, but a lot of tears went into it. More info on that later. <br /><br />Today was their first day of school. Emmie didn't want to go and I stayed for a few minutes to get her settled. I'm picking her up in an hour....God please tell me she had a good day. <br /><br />More coming...Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2589026647166305741.post-51409208176515622502010-07-26T00:43:00.000-07:002010-07-26T00:47:33.872-07:00I hope you are listeningStill no word from TriCare...<br /><br />I have had a horrible headache for two days now and I honestly think it is because I am so stressed about what will happen in 4th grade. The decision has been made to allow Jensen and Emmie to attend Travis Elem. I'm not excited by this decision by any means, but I can't see putting her back at Center. I am going to miss her Learning Center teacher like you would not believe. She has been such an important part of Emmie's development and I can't tell you how many tears have been shed over this decision. But, I have to take the step forward and pray to God that it was the right choice. <br /><br />So, the process begins of taking Emmie's "binder" and recreating it for the new school. If the transfer of records goes as it usually does, the new school will have no idea of any allergies, medical information, or about her disorder. So, I am prepared to share this information within the first few days of school with both the school office, Resource and Speech Teacher, and her classroom instructor. I pray I will get the support needed to make Emmie's year a success. I hope God is listening to this prayer.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2589026647166305741.post-22001050827667798512010-07-20T14:08:00.001-07:002010-07-20T14:20:59.385-07:00Invitation, no thanksI was hoping the next time I posted we would be beginning private speech therapy. However, still NO word from Tri-Care about the approval of services. The Case Manager emailed me a few days ago to assure me he was keeping up with the case and he would call or email as soon as he heard something. Luckily, I have a solid full time job lined up for the fall because we'll have to start paying for therapy for Emmie to be successful in the 4th grade.<br /><br />It's so frustrating these days having zero support. Which brings me to another problem...invitations. Em was invited to a local Vacation Bible School. I'm not letting her go for many reasons. One, I don't know the people and/or church (it was a neighborhood kid that invited her) and two, I don't like putting her in unfamiliar social situations. I know they will come up, trust me, these days the world is ONLY about social situations and how you react to them. But, right now, I can control most of her environment. Putting her in that situation could be a positive or a negative...and it's a chance I don't want to take right now. Not a few weeks before school starts! I know when the mother came down to ask if I had any questions, she probably thought I was being a pain. But, I didn't have any questions because Em isn't going to attend. It's hard for people to understand why, so I told her we had family coming into town (which we do! The Mother in Law, her boyfriend, and Doug's Grandmother is coming). But the real reason I won't let her go is the uncomfortable feeling I have about putting her in that situation. I didn't explain this to that mother although I probably should have. Maybe when the time is right. I should make Em wear an advertisement for her blog on her shirt everyday so people will visit her blog and understand what our life is like in "huhs". <br /><br />Carrington and Jensen are doing fine...enjoying everyday of summer vacation outside riding bikes, talking to friends, and eating their weight in ice cream! They aren't ready to start getting up at 7 for school!<br /><br />Since my last post, we found out that Doug is getting promoted! We are so excited for him and his accomplishments. He has worked so hard for us and he certainly deserves this promotion! We are hoping the promotion comes with better work hours (and secretly PCS orders!) but we'll see.<br /><br />As for me, there is so much going on. We still aren't sure where the kids will go to school. I have been offered the job with the County, but still not sure which site. That will determine where the kids go...but it's still the hurry up and wait game. I will be working my butt off (literally) and transferring to Kansas State University hopefully next summer. I'm excited! There are many reasons why I am transferring and even more reasons why the major is changing. These reasons are mine and not something I'll post here for all to read..well..all three of you! LOL<br /><br />Anyway...off to enjoy the day!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2589026647166305741.post-568794391395610052010-07-10T15:25:00.000-07:002010-07-10T15:43:08.298-07:00It's been awhileIt's been awhile since my last post. I hope you enjoyed seeing Emmie! She loves her shirt and wears it often.<br /><br />A lot has happened since my last post. We received the full report from Carol Gray, the Speech & Language Pathologist, that completed Emmie's most recent evaluation. She was given the SCAN-C, Lindamood Auditory Conceptualization Test, Comprehensive Assessment of Spoken Language, Woodcock-Johnson III Cognitive Abilities-Verbal Comprehension sub test, and the Token Test for Children. Mrs. Gray also completed a parent interview, reviewed Emmie's previous eval, and observed her during a clinical observation during the three day long adventure. Most test were administered during Emmie's first eval with The Listening Center and some were new. Either way, the results were not surprising. She obviously needs speech and language pathology...intensive speech and language. It was the conclusion of Mrs. Gray that Emmalyn has a Receptive Language Disorder. <br /><br />TriCare has been given the updated IEP and report from Mrs. Gray. According to the Pediatric Case Manager, we now have a strong case. Apparently TriCare doesn't recognize CAPD, but does recognize a Receptive Language Disorder. Hello TriCare.. CAPD IS a Receptive Language Disorder. I think trained monkeys are running our insurance company. According to the Pediatric Case Manager, we should know something early next week about the approval of services. According to Mrs. Gray, Emmie needs 2-3 times a week therapy. My luck, TriCare will approve once a month. We'll see. I have hope, but it's slowly fading. <br /><br />Emmie, now, is limited on her dairy intake. I noticed she was having digestive problems when she consumed most dairy products and took her to the Pediatrician. The doctor, based on Emmie's symptoms, thinks she has a pretty severe case of lactose intolerance. She doesn't have an allergy, but she is intolerant to dairy. She is on a daily medication, which the doctor recommended. However, the company that manufactures the children's version is no longer making it because they didn't find a huge need for it on the market. Supply and demand, you know how that works. So, I purchased 6 months worth from the company in the hopes of locating something else that will work for Em. I now monitor her dairy intake..which is difficult because EVERY thing has dairy in it in some form. Some dairy items she can ingest with no problems, but others we have had to change. It's a trial and error process. The problem I am having is when she goes places..for birthday parties, or when someone in the neighborhood offers the kids a treat...they don't know she can't have dairy and obviously if you are offering her a cupcake...she's 9..she wants the cupcake!! It's a learning experience for all of us. <br /><br />I don't want her to feel different. She is obviously different and knows that she isn't like her friends. Which, when you are 9, is a problem because you want to be just like your friends! So, I have tried my best to make her feel special, not different I guess. She gets her own special shopping trip to Trader Joes, or The Nugget Market. She gets to pick ice cream JUST for her or try different milks because SHE has to pick a special one just for her. So far, it's working!!! I have found a "milk" that she will drink and she enjoys. We are using Lactaid regular milk, and Trader Joe's Soy milk. Trader Joe's brand is the only soy she likes. She will also drink almond milk, which has always been a staple in my house! We have found a few "treats" that she enjoys and Carrington and Jensen will also enjoy! The tofu ice cream is non dairy and all three kids LOVE it! SCORE one for mom!!! <br /><br />Summer is fading fast and 4th grade is on my mind everyday. I was offered a job with the County as Paraeducator, but not sure which site. If I'm offered a job at Center, that's where Emmie will be and I pray the extra speech and language that TriCare may approve will help us get through 4th grade. If not, Emmie also has a spot saved at Travis. Although I'm not excited about Travis, we'll see. Scandia is certainly NOT an option and I'll homeschool her before she goes there!<br /><br />More later :)Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2589026647166305741.post-32015549769219830312010-06-07T13:42:00.000-07:002010-06-07T13:43:35.768-07:00<div style='text-align:center;margin:0px auto 10px;'><a href='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZt9_XJbtv0eC-Qv5rKiBNSrObOZqUN6rhSp712jyxMj_0OQC8XiUVK7sF0ucder_NtVHkPAgys77wwkFlR9uhvYq-mIL4BhrtO0YooX8MTQmgxUUuB_DTd9Z7WRgMNGiS9pj5HM7rcIvH/s1600/004.jpg'><img src='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZt9_XJbtv0eC-Qv5rKiBNSrObOZqUN6rhSp712jyxMj_0OQC8XiUVK7sF0ucder_NtVHkPAgys77wwkFlR9uhvYq-mIL4BhrtO0YooX8MTQmgxUUuB_DTd9Z7WRgMNGiS9pj5HM7rcIvH/s320/004.jpg' border='0' alt='' /></a> </div><div style='clear:both; text-align:CENTER'><a href='http://picasa.google.com/blogger/' target='ext'><img src='http://photos1.blogger.com/pbp.gif' alt='Posted by Picasa' style='border: 0px none ; padding: 0px; background: transparent none repeat scroll 0% 50%; -moz-background-clip: initial; -moz-background-origin: initial; -moz-background-inline-policy: initial;' align='middle' border='0' /></a></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2589026647166305741.post-38902543519085784522010-06-05T00:03:00.000-07:002010-06-05T00:10:19.072-07:00Summer has begun!Today was Emmie's last day of Third grade! She enjoyed a fun and fattening ice cream party in class today! I am hearing she can eat her weight in caramel syrup and sprinkles! She also received her report card today. The report card is no surprise, "Emmie is helpful and caring.....Emmie tends to rush through her work...her scores are inconsistent....." blah blah blah. I have never liked report cards. To me, they don't show what my daughter is capable of or really where her weaknesses are. I just receive random numbers on a page. For example, in the section of Language Arts it says, "read grade level text fluently" and she scored a "2" for approaching. What exactly does that mean? It has never really made sense to me. <br /><br />We have had a lot of huhs and whats lately. But I'm going to chalk that up to the over stimulation of the last weeks of school. Those last weeks are nuts! So, we'll see what the next few weeks bring us.<br /><br />On another note, Emmie has completed her second evaluation for Speech and Language. We met with Carol Gray, a speech pathologist, and over three days she completed a full battery of testing on Emmie. We are waiting for the report from Mrs. Gray in the hopes of resubmitting that to the insurance company. If you have had children in California schools then you know fourth grade SUCKS. I'm not sure we can survive fourth grade without the extra speech therapy. We'll see what happens.<br /><br />Summer is here!!!!!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2589026647166305741.post-33797067479207247822010-05-23T15:04:00.000-07:002010-05-23T15:13:29.691-07:00I 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.<br /><br />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. <br /><br />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!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2589026647166305741.post-82937381753505541672010-04-19T10:09:00.000-07:002010-04-19T10:13:59.829-07:00NewsI 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....Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2589026647166305741.post-50839816716734322892010-04-18T13:18:00.000-07:002010-04-18T13:32:35.655-07:00No 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?<br /><br />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.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2589026647166305741.post-60542309176618883102010-04-10T16:06:00.000-07:002010-04-10T16:06:57.221-07:00It's her birthday!<div style="TEXT-ALIGN: center; MARGIN: 0px auto 10px"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie_WqkfQiaJ6h4BEoA6cxPZiGrlLt7YQhiXTVG5s5WNua3HuPp1VP9nttT_iNC9V4VKKiMRd0V5pwYRYG89SQTA_BmL6C_iSjktH0UCpwAuf6H31MCoC5qt-WQGPMLESTWBPmhaIynU17t/s1600/004.JPG"><img style="WIDTH: 164px; HEIGHT: 320px" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie_WqkfQiaJ6h4BEoA6cxPZiGrlLt7YQhiXTVG5s5WNua3HuPp1VP9nttT_iNC9V4VKKiMRd0V5pwYRYG89SQTA_BmL6C_iSjktH0UCpwAuf6H31MCoC5qt-WQGPMLESTWBPmhaIynU17t/s320/004.JPG" width="179" height="320" /></a> </div><br />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.<br /><br />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!<br /><br />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 :)<br /><br />So...Happy Birthday Em! I'm so glad we didn't have to clean you off the walls :)<div style='clear:both; text-align:CENTER'><a href='http://picasa.google.com/blogger/' target='ext'><img src='http://photos1.blogger.com/pbp.gif' alt='Posted by Picasa' style='border: 0px none ; padding: 0px; background: transparent none repeat scroll 0% 50%; -moz-background-clip: initial; -moz-background-origin: initial; -moz-background-inline-policy: initial;' align='middle' border='0' /></a></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2589026647166305741.post-56915392053221930802010-03-26T22:28:00.000-07:002010-03-26T22:39:32.165-07:00Frustrated.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.<br /><br />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.<br /><br />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!<br /><br />In 15 plus years, our children will be the ones running this country. We should be scared.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2589026647166305741.post-25159256929597156772010-03-22T00:48:00.000-07:002010-03-22T00:49:04.945-07:00Short and sweet<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDpMg7TyiRMy5UxCczK5_fgyJcHFi19h_iMeHIIBJf4GO9Dd5Nxd2l1-pmHca5T86yq5fK8lEpDuA7byg-y-T2rkHgHcGouFlvIOEzdG875IoAutyO74Kzsjtsnf4B749BmCDW5-MFFS2z/s1600-h/061.JPG"><img style="MARGIN: 0px 10px 10px 0px; FLOAT: left; CLEAR: both" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDpMg7TyiRMy5UxCczK5_fgyJcHFi19h_iMeHIIBJf4GO9Dd5Nxd2l1-pmHca5T86yq5fK8lEpDuA7byg-y-T2rkHgHcGouFlvIOEzdG875IoAutyO74Kzsjtsnf4B749BmCDW5-MFFS2z/s320/061.JPG" /></a> <br /><br />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.<br /><br />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.<br /><br />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.<div style='clear:both; text-align:LEFT'><a href='http://picasa.google.com/blogger/' target='ext'><img src='http://photos1.blogger.com/pbp.gif' alt='Posted by Picasa' style='border: 0px none ; padding: 0px; background: transparent none repeat scroll 0% 50%; -moz-background-clip: initial; -moz-background-origin: initial; -moz-background-inline-policy: initial;' align='middle' border='0' /></a></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2589026647166305741.post-74296152789886116122010-03-01T00:13:00.001-08:002010-03-01T00:21:14.077-08:00TestI 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.<br /><br />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.<br /><br />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.<br /><br /><a href="http://www.cde.ca.gov/be/ag/ag/yr07/documents/bluenov07item14a6.pdf">http://www.cde.ca.gov/be/ag/ag/yr07/documents/bluenov07item14a6.pdf</a><br /><br />Later taters!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2589026647166305741.post-83385565670050100882010-02-23T23:34:00.000-08:002010-02-23T23:48:31.587-08:00MemorizingHello from rainy California! One day it's sunny and warm, the next it's cold and raining! California really has only two seasons, hot and wet. That's it.<br /><br />Today is Tuesday, although all day it felt like another dreaded Monday. I picked up a new Fluffy book..you all know I love that guinea pig! He's such a little smart mouth critter and I "heart" him! Emmie enjoys him too..bonus! You know, not all children's literature is created equal. Some days, she'll bring me a book to read and I dread it. It will be a book she enjoys, but it's blah to read. Other days, she'll come down the stairs with a gem of a story and I have to admit..I get a little giddy!<br /><br />Today, I showed her teacher a <strong><em>Jan Brett</em></strong> poster that the wonderful author and illustrated autographed for our upcoming PTA silent auction. She read a few Jan Brett books to the class to get them excited about the auction. Mrs. Brett has a way with words, but her art is breathtaking. She really thinks of EVERY detail and her stories jump off the pages! Her teacher also enjoyed a wordless book from another fabulous illustration, <em><strong>Robin Glasser</strong></em>. The art in a book is very important to me. It helps tell a story all on it's own!<br /><br /><em><span style="color:#cc0000;">Today wasn't all peachy</span></em>. I was annoyed this afternoon. A volunteer reads with the kids in the classroom for testing purposes. She told me today that Emmie did a good job reading with her and she knew all the "big" words. She also said that she reads it to Emmie a few times, then reads it together before Emmie reads it on her own. I was nice, which if you know me, you KNOW it's hard sometimes. But, I was annoyed. Emmie 101...she doesn't LEARN the words, she MEMORIZES the words. I have told her teacher this and her "Team" is aware. She is a smart cookie. If you read it to her the first time, she makes a mental note of the "hard" words. The words she thinks she isn't going to be able to pronounce. The more you read it to her or "with" her, the more she is able to memorize the word. So, when it's time for her to read it..usually, it's smooth as butta' (usually, there are times where she is still not able to memorize the word and stumbles through it). Some people think..well, at least she knew the word, who cares? NO!!!!! She still doesn't "know" the word. Because tomorrow, if you give her the same story she isn't going to know the word. She needs to <span style="color:#cc0000;"><strong>LEARN</strong></span> the sounds that word makes, the sounds you have to put together to make that word. Often, if she reads it a second time the word because another word in her memory that begins or ends with the same letter or letter sound..or sometimes it becomes something completely different. Tonight, the word, "rule" became "glue" when she read it. Memorizing the word is not what my daughter needs and I'm frustrated that despite my attempts to explain this to people, teaching her is STILL not being done properly!!!!!<br /><br />Jumping off the soapbox. Expect new photos soon...as soon as my Ark is built!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2589026647166305741.post-56784535210881632912010-02-21T22:52:00.001-08:002010-02-21T23:00:50.609-08:00ConferenceSo, I went to the conference. Nerves and all! I was actually very surprised and had a nice time. The conference began with a wonderful Key Speaker who not only has a special needs child but also works in the field of mental health. She brought a lot of great information and insight to the table and was a very delightful lady. After the speaker, we were given a short break to visit the informational tables. I have to tell you, I had NO idea there were so many resources in my own backyard! I'll tell you more about them as I plan to develop my relationship with each one I feel will be helpful. After a few minutes, we broke into two groups. My group began with the "Navigating thru Medical Systems-Tri West, DGMC, SNIAC, and North Bay". It was an interested workshop. I learned a few things about Tri-Care (our insurance company). I was disappointed with the SNIAC though. The rep made everything look good on paper, but I know that system is flawed and he seemed clueless on it. He wasn't very helpful or informative. Although, through the open forum and this one family that spoke..I had the feeling that if we wore our rank on our lapel, things might be different. After Workshop one, we broke for lunch, which was provided. During lunch was a funny little "stress and relaxation" session. The two ladies were Military Family Life Consultants and they offered advice on how to reduce your stress. It was light hearted and needed! After lunch, we went to Workshop two, which included "Navigating thru the Educational System-SCOE (our office our education), Parent Advocate, and STOMP". OMG! This workshop was great! Most of the speakers were military families or have worked with them for many years, so they actually KNEW what it was like to go into a school or to not see the same doctor twice. This was the best part of the whole conference! I even won a set of books! They are Special education law and advocacy books. One of them has been on my Borders wish list!! YAY!<br /><br />I wasn't sure what to expect with the conference. But the parents were great and the speakers were good. It was informative and I learned a few things..which is always nice!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2589026647166305741.post-55088955968309269972010-02-19T13:38:00.000-08:002010-02-19T13:53:04.799-08:00The same boatOn Saturday, our base is hosting a Special Needs Conference for the families enrolled in the EFMP program. EFMP stands for Exceptional Family Member Program and is basically a computer database program that labels the families as having a special need. Just in case we get orders to a new base, they can review our EFMP and see if the base can support the family. We all have read how that works in my previous rants about the program. It's a completely flawed system and sadly the people running it wouldn't know a special need from the man on the moon. Anyway, I'm excited about the conference. I am curious as to what the Conference has to offer, what information, what programs.<br /><br />I have to tell you that I'm hesitate to go. Often, disabilities like Emmie's, get the cold shoulder because it's not something you "see". You can't look at Emmie and tell that she has a need beyond most 3rd graders. And if you spend time playing with her, chances are, you won't notice either. But if you spend time with everyday activities, around the house and doing schoolwork, you'll notice somethings different. It frustrates me that disabilities like Emmie's get swept under the rug and not taken seriously. Our insurance won't cover any additional programs for Emmie. Not even a dime for anything that will help her be successful in school, help her auditory memory skills grow, help her processors move faster, NOTHING. But let's label her as ADHD and we'll have workshops for her, we'll have support groups. I'm sure you'll hear my ADHD rant soon, don't worry, I'll warn you first.<br /><br />I'm just frustrated. I am working my butt off, along with her teachers, to help keep her head above water. It would be nice to get support, nice to get validation, nice to get a "hey, we didn't know this was a problem..what can we do to help." Instead of looking at me like I'm crazy. But, I'm going to keep an open mind about the Conference. I'm going in the hopes of meeting other people who are in the same boat and can relate. I'm going with the hopes of finding a resource that will help Emmie. Reluctantly, I'm going to walk in the room and put on my pretend smile and see what happens.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2589026647166305741.post-40820990408704510472010-02-04T10:28:00.000-08:002010-02-04T10:32:45.204-08:00Lucy's operationYesterday was an exciting day. A dear friend had to have surgery on her back and neck..she pulled through just fine and didn't even lose any stuffing! You see, Emmie's turtle Lucy, sprung a leak! Remember, she got her turtle for her birthday from Build a Bear and the wonderful company also performs surgery if the stitches come out. So, yesterday Lucy got dressed and we drove her to her operation. The young man working was very nice and told Emmie he would fix Lucy right up! We, of course, shopped because the poor turtle needed a new outfit. After all, she was undergoing a medical procedure! A few minutes later, the young man brought Lucy to Emmie and explained that Lucy pulled through the surgery just fine. The back surgery was a success, but she may be sore and to be careful when you squeeze her. The next surgery was tricky, but Lucy was a trooper. Emmie was so excited to have her dear friend all stitched up! We left with a new Valentines dress and black high heel shoes for Lucy. That turtle has her own dresser drawer.<br /><br />We are all recovering from the <span id="SPELLING_ERROR_0" class="blsp-spelling-corrected">traumatic</span> event of Lucy's surgery. <span id="SPELLING_ERROR_1" class="blsp-spelling-corrected">ha ha</span> I swear that turtle lives better than I do!!Unknownnoreply@blogger.com0