The Exhaustion

I am so tired of fighting everything. It really gets old. I didn't realize that when you become a SNK mom you also have to turn into a prize fighter.

The whole school thing is really wearing on me. I talked to the lady at the state BOE yesterday. I am not too convinced that they will do the right thing. She was attempting to tell me that they didn't have to do certain things. That sent up huge red flags & set off alarm bells in my brain. It is CRAP! They are not above the federal law. I am just going to try to relax a bit & wait until I hear more from them. They were supposed to call today & so far, at 2:30PM no call. Again, not very convincing. I am mentally preparing myself to retain the attorney and go to due process. I am not sure mediation can help these yahoos. Ding-Ding Round 2

Insurance. What more is there to say? Can't live without it if you have medical issues, going broke paying for it. Now, my latest fight is with our dental insurance. Even worse, it is from almost a year ago that I am just finding out about this. Things they say they pay for they are denying. I was slightly embarrassed when we got to the dentist this morning & was told we had an outstanding balance. On the dentists behalf, they never sent me the bill. I would know if it did cause that is the only dental claim I made last year. WTH? (shame on me for not getting myself to the dentist) I am also still trying to get Ci.gna to pay for some stuff from my hospitalization too. Ding-Ding Round 3

Other things wearing me down:

My stupid job. Don't get me wrong, I love what I do. I am just sick of all the other BS. Just let me do my job & take care of the patients. Stop inundating me with all the extra junk you expect us to do. Also, don't tell me every little thing I do wrong & never tell me what I do right. I have taught MM to say Upper Managment Stinks. That makes me smile.

My rotten sinuses are requiring another surgery. Yep. Last one didn't take. This one is way more risky & kind of my last hope. Not too happy & haven't even scheduled it cause I don't want to deal right now. This also is not the ideal time of year for me since allergy season is about to kick in (hopefully, come on Spring).

MM needs to be sedated & intubated for a dental procedure. Her baby teeth aren't falling out & the permanent teeth are coming in like crazy. I believe he said 4 teeth will have to be pulled, possibly more. She will also get her xrays & teeth cleaned then too cause she wouldn't let them in her mouth AT ALL today. Well, she wouldn't let the yahoo hygienist clean her teeth. The girl was really a butt & it is a pediatric office! I just don't want to go into the way she acted, but I was actually glad my kid has a huge gag reflex & throws up at the drop of a dime. TWICE on her! LOL Serves her right for not listening & being inpatient with a child. Needing to go to the hospital for dental procedure = more insurance fights!

Like everyone else, all the doctor appointments come up at once. We have had 4 appointments this week alone. Bye-bye any extra cash we had!

Now, to end things on a good note:
I have started clipping coupons like mad. I have saved over $200 that last few weeks. There are some really cool websites out there to help you.

I have found a really nice community resource I wasn't aware of. It is an olympic sized indoor pool & the price for a membership is super, duper affordable! The guy was really nice & gave us a free pass to check it out tomorrow. Can't wait to take my little fishy.

I have time off in about 3 weeks!

Spring is on the way! We had a wonderful thunderstorm here today. The crocuses are blooming & the daffodils are starting to spring up.

A Letter to Insurance PART 2

Dear Ci.gna,


I don't really want to say thank you. I just want to let you know IT IS ABOUT TIME! You finally decided to do the right thing. It only took me 3 months, 3 appeals, multiple letters & support notes from myself and the doctors, lots of trips to the doctor for letters, a large amount of hoop jumping, too much stress and too many tears to count. I am sure you were hoping I would go away and not do all the work it required to get my daughter a simple lightweight pediatric wheelchair. WRONG!


After you had a meeting of your Medical Necessity Committee (which I opted to not sit in via conference call cause I let go and let God), you sent a letter to ME (not MM) telling me you will cover her chair. I am assuming the persons on this committee understood Spastic Diplegic Cerebral Palsy. I am quite sure this cost a large amount of extra money and time on your company's behalf. So, the chair will be whatever the price it is PLUS the cost of the 2 RNs & 1 MD on the committe, the cost of the letters (which were overnighted) and the appeals associates time. Not a very good use of resources in my opinion. I now know why my premiums keep going up and yet, you are paying for less. Sounds like your customers need to have a utilization review of your company and deny salary of certain people for creating BS work.


F#$k you very much for all of the added stress in my life. I am quite sure you will be denying my future claims for hypertension and anxiety.

Sincerely,

Meghatrons Mom

I will be writing to Variety, The Children's Charity, to thank them for covering the chair & the chair place will be refunding them their money. (I might need them to pay for her next chair)

Sometimes, it is worth the fight.

Brain Thaw

The sun has come out. I have my formal complaint filed, I am just waiting to here from the State BOE. If interested, here it is. Hope this helps if any of you ever have to do it, although I pray you never will. (all names have been replaced with *****) Let me know what you think, now that I feel I have a degree in special education law! LOL

Attachment to Formal Complaint

Note: Exhibits are attached with complaint. Recording is in minutes from the recording this parent made during the meeting.


#1 Failure to do Reevaluations in a timely manner.
--The District failed to not only provide but did not even begin the reevaluation process within the required time frame. The triennial reevaluations were due on March 8, 2009. (Exhibits A, B, C, D) The District did not even request for the reevaluations to be done until September 23, 2009 (Exhibit E). The District is out of compliance with IDEA part D Sec 300.303. Even being late, they were not done in a timely manner nor provided in a timely manner. The reports were still being done up until the IEP meeting on February 8, 2010. (Exhibit F.1) The District is out of compliance with IDEA part D Sec 300.301 (c) 1.i.
#2 Failure to comply with request to Review Records and Inspect Records in a timely manner
--The District failed to allow this parent to inspect and review any and all reports prior to the IEP meeting scheduled on January 26, 2010. An email was sent to *****, Resource & Case Manager, on January 20, 2010, requesting any of the reports, updates evaluations (which should have been triennial reevaluations) prior to the January 26, 2010, IEP meeting (Exhibit G) Only 2 reports were received, occupational therapy & physical therapy. The meeting had to be re-scheduled for February 9, 2010. Again, an email was sent on February 1, 2010 requesting the remaining reports (Exhibit H). An incomplete speech/language report was sent home with ***** on February 8, 2010 (Exhibit F.2). The District is out of compliance with IDEA 300.613 (a) comply with a request without unnecessary delay and before any meeting regarding an IEP
#3 Failure to comply with request to Review Records and Inspect Records in a timely manner
-- The District failed to allow this parent to review & inspect the psychology triennial reevaluation when requested. Emails were sent by this parent on January 20, 2010 & on February 1, 2010 (Exhibits G, H), requesting to review any reports prior to the IEP meeting. An email was sent on February 4, 2010, by *****, Resource & Case Manager. It stated that the school psychologist’s supervisor rather them go over the results with parents in person & she would be happy to do it 30 minutes prior to the meeting (Exhibit I). I then inquired during the IEP meeting on February 9, 2010 (which was recorded by this parent & The District), why I couldn't have had the report prior to since it is my right. *****, school psychologist, stated “it is our county policy to not” (Recording 1:46:52). The District is out of compliance with IDEA 300.613 (a). comply with a request without unnecessary delay and before any meeting regarding an IEP
--The District has failed to allow this parent to review any data collection or anecdotal made supporting the IEP goals. This parent asked multiple times during February 9, 2010, IEP meeting to see the data supporting goals from disciplines (SL/T Recording 1:40:12, 59:44; OT Recording 1:03:34; Resource Recording 21:05). As of this writing, no data has ever been provided to this parent. The District is out of compliance with IDEA 300.613 (a). comply with a request without unnecessary delay and before any meeting regarding an IEP

#4 Failure to do Re-evaluations in a timely manner.
---The District failed to do a formal physical therapy reevaluation for my daughter’s triennial reevaluation (Recording 1:12:45). The physical therapist, *****, submitted a report to us on January 27, 2010, for the February 9, 2010, IEP meeting (Exhibit J,). The report was almost the same report from January 2009 (Exhibit K). It had errors in it as well (Exhibit J.1, J.2). The District is out of compliance of IDEA part D Sec 300.303 (b) (2) must occur at least once every 3 years.

#5 Failure to make Assistive Technology Available in order to receive FAPE
---The District has failed to provide what is required for my daughter to access all of her learning materials through her Assistive Technology (a label maker for answering worksheets, a word processor for writing homework) (Exhibit L). Instead the District has continued to require me to fund the label maker & refills, printer ink for school, printer ink for home, paper etc. (Exhibits M & O, Recording 53:40, 53:32 52:19) The occupational therapy reevaluation (January 12, 2010) clearly shows a need for Assistive Technology, listing label maker & computer (Exhibit N). The OT also stated during February 9. 2010, meeting that “underlying skills to complete written expression in a traditional fashion are limited and delayed, so there has to be some type of strategies for written expression” (Recording 54:28). The District has also refused to include the exact needs within the IEP as requested, only placing AT- Adapted Writing Tools under Supplementary Aids on the IEP (Exhibit R). The District is out of compliance with IDEA 602 (2) (B) purchasing, leasing, or otherwise providing for the acquisition of assistive technology devices by such child; 300.6 (c) Selecting, designing, fitting, customizing, adapting, applying, maintaining, repairing, or replacing assistive technology devices & 300.105 (b) On a case-by-case basis, the use of school-purchased assistive technology devices in a child's home or in other settings is required if the child's IEP Team determines that the child needs access to those devices in order to receive FAPE.

#6 The District Failed to provide FAPE by addressing goals that were met, instead continued to just allow the skills to stagnate instead of proposing new objectives/goals for there to be consistent educational progress (Exhibits P & Q).

#7 The District has failed to appropriately include within the IEP what is necessary for my daughter to travel safely on the bus under supplementary aids/services. A letter of concern in regards to bus safety was submitted by Dr. ***** at IEP meeting held April 28, 2009 (Exhibit S). These parents also expressed concern in The District wanting to remove daughter from a five point harness on the bus at meeting on February 9, 2010 (Recording 1:07:39). The principal, ***** stated “Assistant said she is getting too big for car seat on the bus. The driver has suggested maybe looking at a seat belt.” (Recording 1:09:34, 1:08:00) Parent stated “Seems straps need to be readjusted every morning like a smaller child rides in the seat too” (Recording 1:06:25, 28:37). The District is out of compliance with **** State Board of Education Rule 0520-1-9-.05 (3) (d). There were also bussing recommendations made at April 28, 2009 meeting that were not added back to current IEP (Exhibit T, PT discussed this Recording 1:09:15). A letter with list of objections was sent on February 23, 2010, to **** (Exhibit U). As of writing of this complaint, no reply has been made by The District.

#8 The District has continually failed to appropriately include any of our parental concerns on the IEP (Exhibits U& V). The February 9, 2010 IEP Parent Concerns part is left blank, even though we had several concerns in the meeting (Exhibit V, Recording: 1:28:45, 57:03, 56:00, 30:42, 24:50, 14:42) We were never formally asked our concerns as meetings in the past. The IEP is left blank on the parents stated draft (Exhibit V).

Brain Freeze

And it's not from this ridiculously cold winter either.

I am spending every day off & each spare minute I have putting together my administrative complaint for the state board of education. Each complaint I have has to be backed up by the correct part of the law as well as show data (or lack of) supporting my complaint. It is a large amount of research & tricky wording to get the complaint "just right". I have worked on it for several hours each day off until my head hurts & my eyes can't focus. I feel like I am back in school again too with as much work & research I am doing here.

Sadly, the list of complaints I have is at 8 items. This means that MM's rights under IDEA and to receive FAPE have been violated that many times. It is ridiculous! This school district is so lacking & they have a culture of poor service for special education. I can't figure out if it is the entire county or just this school. I think it is a mixture of both.

It makes me even sadder to think that I will be putting up with this for at least the next 11 years. I hope that we will be able to eventually sell our house & move to the next county over. I am not naive to think moving will magically make all of our problems disappear, but I do think a large majority of them will be alleviated.

After I file this administrative complaint & receive notice they got it, I will be filing the papers for mediation. Waiting to file for mediation is in hopes that it will give me some leverage when they realize they are being investigated. This was on advice from a wonderful parental advocate. She is so super helpful! I need to get her & my bestie a gift card once this is all done. I am hoping I do not have to go to Due Process, but will if needed.

Have you ever had to file a complaint, go to mediation or due process? If so, I would love to hear from you!


On a different note: Some of these feelings I keep posting about may be medically related. I had a dr appt the other day. I have had some problems with my heart since this last illness. The dr checked my thryoid. It appears I have a major hypothyroidism! (googl.e some of the symptoms and you will find many things I have complained of: severe fatigue, loss of energy, weight gain, difficulty losing weight, depression, headaches, allergies that get worse, hypertension, increased heart rate, lack of libido, memory loss, irritability, fuzzy thinking, difficulty following conversation or train of thought). I am curious to see if some of my elevated BP comes down with treating this, as well as my depression. Fingers crossed that it is a simple little pill that will give me the boost I need & help get me off of some of the crazy high doses of BP meds & anti depressants!

And MM has ANOTHER cold/upper airway infection. I hate auto immune issues.

Where are you?

I miss the old me.

How I used to describe myself:
Love to laugh, joke & just have fun. A perfectionist who likes to succeed & do everything as the best. Not a jealous type. Not quick to anger. Peacemaker, fixer, go-getter. Not a yeller or a fighter. Assertive. Naive. Independent & self-reliant. Dreamer but a serious planner, who can be spontaneous (especially when it comes to road trips) Never skinny, but fit & curvy. Organized & a good housekeeper.

I haven't been me since May 2000. Almost a decade since I lost myself. Time flies. I realize we all grow & change. This isn't just that.

After my bout of M.RS.A infection that could have cost me my life, I changed. That was a good thing. It made me appreciate life a little more. It made me not take things for granted. It scared me too, facing my own mortality. And I packed on weight.

A couple years later, we started trying to have a baby. It was hard and we lost a pregnancy. I fell apart. Trying to conceive took a toll on us, as it does everyone. Again, I changed. That brought on my first bout with anxiety/depression. I fought through it, with a little bit of meds. It made me angry, sad, jealous. I found out I wasn't good at everything I tried. I found out I can fail. I found out I do have a jealous bone or two in my body. Things that aren't all bad, but certainly different feelings for me. And I packed on weight.

I finally got pregnant with MM. I never complained at all during the pregnancy. It had a rocky start and horrific all-day sickness through out the entire pregnancy. I made it farther than anyone thought I would. I just kept plugging along, one day at a time. It wasn't the perfect pregnancy. Nothing went as I planned. It was okay though. We were having a baby. Then I developed preeclampsia & all things changed. It certainly was different being on the other side of the incubator. I had to rely on others to take care of me AND my child. I learned at times I was helpless. I realized I was, once again, a failure at something. I again learned anger. Anger at all the easy pregnancies; anger at babies being born on time; anger at ladies who got to have their babies in the room with them & leave the hospital with their babies. I learned I could be passive-aggressive with NICU nurses. I lost my ability to speak up when it came to MM & what was best because I was so sick myself. I also got intimidated by others cause they could care for my child better than me.


We brought her home & I thought we would live happily ever after. Wrong- there went my naivity. She was a lot of work, high maintenance. Slowly clutter over came the house. Then one diagnosis after another came. I was constantly on the road, going from one doctor or therapy to the next or people were coming to the house for treatment. Life became a whirlwind of this stuff along with working nearly full time. Something had to give, so the house became kind of clean and cluttered, not neat & spotless. Once more, anger boiled up cause my life wasn't kinder.mus.ic, mommy playdates & on time milestones. Helplessness came on cause of all the therapists knowing how to help fix what is wrong with my daughter. I lost all my spontaneity cause of all the incessant appointments, the autism, the sensory issues. I lost alot of my dreams. I learned I can't fix everything. More anxiety & depression set in, once I woke up from the first year fog, but it settled in and has stayed. I learned how quickly I could get angry at everyone when stressed. And I packed on weight.

Moving to the public school system was a real eye opener. I have learned I can fly off the handle and go from zero to pi$$ed off in 0.2 seconds. I have learned I can yell (at whoever is nearby) and FIGHT. OMG, can I fight, but mostly out of necessity. None of this is fun. I do have fun sometimes, but most of my life is stress & work.

So, like I said, I miss the old me. I am working hard trying to find parts of the old me as the new me moves through this life. I am trying to lose weight. So far, I have lost 11 lbs since the beginning of the year. Pretty good considering I have been on large amounts of ster.oids for the last 3 weeks. I have started keeping up with the house again. It has never been dirty, but it is now decluttered & super clean the way I like it. I am being more assertive when it comes to matters of MM and not just taking for granted what they tell me. I am working on not being so quick to anger & trying to be the happy-go-lucky once more. I am learning I don't have to be perfect all the time and its okay. I don't know if I can ever have back the spontaneity I used to enjoy with all of MM's issues. We ALL are affected by autism in that way. I am only feeling moderately depressed at times, not the severe gripping kind I have felt in the past. (That's not to say it won't creep up on me and grab me again. I take my meds & I will run to counseling when I feel it starting if I can recognize it) Most of all, I want to have lots of fun again. I don't know how I will get there, but I will, slowly but surely.

The Give Me a Break Line

Hey! Thanks for all the prayers, thoughts, etc cause it worked! His heart is clear this time (he's had stents in the past)!!! It is probably a gi thing like reflux or a hernia. I am so thankful!

We actually got a pass to the Give Me a Break Line for now! Woohoo!

Enough Already, 2010!-- UPDATE

We are having one bang up of a year so far.

I told you of my illness hat landed me in the hospital for several days. While I was there, my FIL had to have some stents put in his carotid artery cause he suffered a stroke Christmas eve. My BIL needs another surgery on his legs after having a heart bypass & bypasses for both his legs last year. My sister had a seizure out of no where a few weeks ago. The EEG showed seizure activity, so she is being place on meds & needs a 48 hour EEG. This whole school things is out of control. All of MMs appointments are getting to come around again. I have been avoiding scheduling some of them just so I dont have to deal. I have had horrible insmonia & crazy emotions from the steroids. DH & I are going through another rocky patch, not seeing eye to eye on the school stuff, money, etc.

Now, my mom just called me. My dad is in the ER with chest pains & EKG changes. Possible heart attack.

I am so spent. I am really losing my faith here. I know that God doesn't cause this, but how much more can I handle? Could really use some prayers/vibes or whatever you do. Where is the give me a break line? I REALLY need it.


***He will be having a heart cath tomorrow to see what is going on. Thanks for the prayers!***