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!***

Literally Autsim

About 15 minutes after DH put MM to bed, I went upstairs. I could hear her reading her books talking to herself as she usually does. I then hear her pass gas kind of loud. Then she says: "Cinderella, you far.ted I heard you!"

She came home from school with super star sticker on her shirt.
Me: Why did you get that sticker?
MM: I a smarty pants
Me: I know you are a smarty pants, but what did you do to get that sticker?
MM: (with exaggerated hand movements) I the only one who knew clockwise and counterclockwise! (she's only in first grade!)

New words that crack her up:
Tamper Evident Cap
Redundant
Are we going to go Wally World?

Cool Game!

Since I have a blog, one can kind of guess I love the computer. I also like letting MM play on the computer, but don't just want to fill her mind with junk. She sometimes has a difficult time playing the games due to her hands, the visual parts or the noise of the games. I would also like a way for the computer to help her with some of the issues related to autism.

What's a mom to do?

Well, after checking the blogs I follow, I found out my friend, Colleen has posted a really cool contest! Go check it out!

BUT, before you go there, look at the website of the game creator! You have to tell her which game you would like in a comment to get an entry. They also have other items available on their website.

If you take your child to therapy, I am sure a therpist would love to add this to their arsenal. Go on, enter & go give Colleen some love!

Posted on Blog.ger Mess.age Bo.ard---UPDATE

Your Blogs URL: tillthesshortbus.blogspot.com

I realize that Word Verification is a random assortment of letters and numbers designed to prevent spamming computers from leaving naughty responses on people's blogs. I realize that Blogger has certain measures in place to make sure that racist terms, foul language, etc never appear in a specific order.

That being said, I want to question WHY, on a blog about a child with disabilities, the R word came up for word verification. If you do not realize what the R word is, it is r-----*. This was on MY blog. I was mortified to read this in my comments.

With the large population of special needs blogs, both parents and others use Blogger as a networking tool to support one another. I think it is disgusting that you have not taken measures to prevent such a terrible word from appearing. Yes, it is true that certain populations of people do not understand why this is such a big deal. However, there is a huge number who understand how truly offensive this word is. As http://www.r-word.org/ says, "our language frames how we see each other". Allowing this as word verification just continues the pejorative attitude towards people with disabilities.

I hope & expect that action will be taken to prevent this from happening again. I do not want this on my blog. It would also be nice if a PUBLIC apology would be made to me and my fellow special needs bloggers.

I was unable to find where else to send this to. It needs to go to the top of the chain at Blogger.

*Did not want to use word here, but did in post

**Allie, I hope you don't mind, but I used your wonderful post as a guideline & paraphrased some of what you said.**

I encourage all of you to contact blogger as well. As soon as I find out where else to send this, I will. Anyone out there know?

******************************************************************
Okay, I posted a question on the help message board.

Now, here is the response I got from nite.cruzr (which if you just happen to click on his name in the post you can get his email)
As you state, word verification is a random jumble of letters and numbers. I'd be surprised if there are no world languages which don't see some "naughty" or "offensive" words pop up there, from time to time.

I realise that seeing "idiot" or "retard" from time to time will not fill you with joy. That said, if seeing that come up during word verification is the only offensive experience that you have during any given day, you must have a pretty darn good day overall.

I have forwarded this for Blogger's attention, however.

Nice, huh? He also asked if I was Ally cause she had posted as well.

Here is my reply to him:

to nitecruzr:

No, I am not Ally. She is the one who posted on my blog.

"HIS POST"

I did not ask for YOUR opinion about being offended. I asked for help in who I can contact. I have a child with special needs. You have NO IDEA what I encounter day in & day out, so please don't presume what type of day I have. There are a few assumptions I could make about you too, but I am not going to do that, cause that would be sinking to your level

I am thinking he might need some other emails or posts, huh? Oy vay.

THANKS FOR NOTHING GO.OGLE/BL.OGGER

And Runnin', Runnin'

My mind, that is.

INSOMNI.A

I have it bad. Some of it is s.teriod induced (I was on high doses to help with my asthma), but I am weaning off of those. Most of it is stress induced.

All of this school stuff is crazy. I can't turn my brain off, no matter what. I have tried EVERYTHING except am.bi.en. I don't feel that bad, but how long can I keep going on less than 4 hours of sleep? I am a go to bed at 9 get up at 5 kind of girl. I worry that I will run myself down and get sick again. I can't afford that- physically, mentally, financially or time-wise!

The meeting with the attor.ney went very well. I don't think it will be a matter of getting lots of money like most people think when someone needs to get involved in litigation. It is a matter of forcing their hand and getting them to do what is appropriate for MM. For my initial consultation, we talked for 2 1/2 hours. He is going to review all the info, reports, IEPS, etc and then give me some legal advice.

I really liked this gentleman. He doesn't appear to be the "shark" that people talk about. He was very calming, very methodical, but OH SO knowledgeable. He is the guru for special education law around here. I am very pleased. He realizes I don't have a lot of money (it is tied up in MM's therapy & medical stuff) or time to fight a huge law suit. IF I have to, I will. In talking to him, I feel validated. I do not want to go into any more details than that on here, since blogs are public.

The reason why I feel validated? Per usual, DH. I don't understand why we can't seem to get on the same page here when it comes to the education stuff. I think I value education more than he does, since it was a priority in my family growing up and not so much in his. He thinks I am crazy & over reacting. He feels that they (the school) are trying to do the right thing, but they don't know how. WTH? He hasn't done any reading or research about the laws, rights of special ed children, etc. I HAVE. TONS! If he would, he would realize what is going on here. If it is lack of know how, then they better learn or get someone in there who does. It is the LAW. I don't believe they are even doing what is necessary and appropriate, THE LAW, not just the right thing. There are so many things that are wrong and it keeps getting worse, that it can't keep happening. She needs to be able to function and learn how to independently. They need to give her the tools so she can do this. They want to get by with as little as possible. I don't know if it is just laziness, lack of money, lack of knowledge, etc. I DO know that by doing what I am doing, we will get to the heart of it.

We are fortunate. I am college educated. I am organized. I know how to do research. I have a large number of resources to utilize. I am a great advocate for my child. I am not the first mother to go in there without the support of her husband. (This was all stuff the attorney told me; nice to hear from a stranger) What about the parents who only have a third grade level of reading? They will just blindly do what the school tells them. That is WRONG! I can't let this happen to MM or another child. I know that it will, but even if I can make one tiny bit of difference, then this is worth it.

It is part of his denial thing, I guess. It just pi$$es me off to no end. We fight, we don't talk, etc. I am tired of fighting him about everything. He was also angry that I am spending more money. TOO BAD! This is about MM! I want her to be the best she can be. He is a very good father to her. I know he loves her. He takes wonderful care of her. He tries hard. He is still learning himself and just waking up to the fact that this is life long. He is in his own grieving process. I just don't think he is a good partner to me.

In all fairness, I am not a good partner to him. We have lost our ability to communicate with one another. I can easily see why the divorce rate is so high. I am very passionate. I react emotionally at first (not in public, at home, I rant and rave, cry, etc), but then am very methodical about doing things. By reacting emotionally, I AM HUMAN! This is my child! My only child who happens to have some disabilities. My only child who I have to guide and teach her the world, in spite of her wanting to be in her own world. He thinks I am just plain crazy. He doesn't believe in depression or anxiety (even though he had some terrible bouts with anxiety not so long ago, I would have thought he would be more sympathetic). He thinks it is BS and that I just need to relax and it will be okay. If it were that simple.... He won't go back to counseling because he said he first suggested it a while ago (he went one session when I was having problems) and so he doesn't want to go now. I think that is childish. I wanted to first, you didn't, so now no way. I realize that was my mistake, but come on!

I need to step back myself and take a look. I am doing a large amount of self introspection on top of every thing else. I want my marriage to work.

It takes two though.


This is only 1/1,000,000 of all that is going on in my brain. And I wonder why I can't sleep?

The Gory Details

First, thanks for the heads up comment about the needing to disagree. I have at least 10 days to sign off or do the disagree. Advice is ALWAYS welcome & much appreciated!

Please realize that as I type this, I am putting my thoughts out here which really has a large amount of sarcasm thrown in.

First, I had the scrambling when I said I would be recording the meeting. They had to run to find a tape recorder. That sort of set the tone for a not so happy meeting. The principal then started off with her usual "we are late, hurry up" type of statements. She is always trying to rush the meetings. It makes me very angry. She even tried to claim we would have to end the meeting cause they tape stopped. She had to get another tape! THE NERVE!

Psych started the meeting. I asked why I couldn't have had the report prior to the meeting. It is my right. She said it is our county policy to not. I told her that is the culture of the school system, NOT the federal law. ::::deer in headlights look from all::::: She then proceeded to read the report to us. I only teared up a bit, seeing once again in black & white that my child is on the spectrum. Same diagnosis- mild to moderate autism, high probability of asperger's, but just labeled ASD. (I guess since a new person did it that somewhere in the back of my crazy mind I was holding out hope it would be different. I hear all these stories of people claiming their child recovered & no longer tested for it. False hope. Thanks for nothing Jen.ny Mc.Carth.y WHY do you get to be rich, gorgeous & have your child "recovered"? I call BS. BUT I DIGRESS) Did I mention though that she has SUPERIOR intelligence in most things? Boo-yah! She is smart, she just can't always get it out! BUT, tell me something I didn't know!

We then moved on to SL/T. She too did not have the full report. Was asked why? PROCRASTINATION is their name of the game in this school. As she was going over her reports, I asked her for data points supporting this. ::::deer in headlights look from all::::: She said she had them, but not with her. WTH??? Except for the delay in reports, I believe she really is trying her best to help her & doing a good job.

OT, same thing. Went over report. I must say, OT was spot on. She gave us the report early, knows MM well & is doing wonders for her. She did a great job & I have no beef with her.

PT.... HAHAHAHAHAHA! What a joke! I already addressed that a bit. She really didn't have much to say. We didn't get a chance to ream her about the report cause she ran out to the bus to see the type of seating. Busing will not be an issue as in the past since she didn't do anything to change the report. I believe I will be asking for an independent eval.

Our Resource (which is her special ed/case manager) had no reports. I wanted to know why almost NONE of our goals were met in the IEP. She kept saying over & over how she met all of her academic goals, BUT she didn't show me any data to support that. I asked them all how they could NOT INCREASE her services when she is not meeting goals? They never really had an answer. They left the times & amount the same. The resource person made me very angry when she said she didn't have enough time/help. I said "Too bad, NOT MY PROBLEM".

I got a very major serious run around about her adaptive tech stuff. They are asking for ridiculousness. They don't want to scan her work or give her a lap top to take back & forth. They want her to do double work by transferring it to computer & stapling it. I am NOT paying for the ink on my printer to do this! I said the label maker is getting expensive for us and has no punctuation. They were like "too bad". The regular teacher even got mad & huffy about it. I have a large amount of anger about the way the were acting aggressively, adversarial & stonewalling. I tried hard to stay calm & did pretty well for the most part. Even my wonderful hubby was angry at the way they were acting.

We came up with some goals. I don't know about them. I am glad I have an appointment Friday morning with the attorney to figure out what I need to do. I do know I will be filing a complaint with the state, I will be sending a copy of the PT report with a letter & a list of concerns to her supervisor. I have on tape on the principal acted, her statements, etc. She sat on a laptop next to me during the meeting. I could see everything she was doing & NONE OF IT was related to our meeting. People got up & left the room without asking our permission. It was a mess and it is all recorded. I am standing up for MM, ourselves & for any one else that has to deal with this nonsense.

Sorry if this is scattered but I know SOOOOOOOO many of you are waiting.

Back, from IEP

OMG! It was INTENSE!

I am so glad I have an appointment on Friday for advice.

I will update when I can. So much info to digest, so much BS to cut through.

Did not sign it when I left.

Just need to decompress right now. Thanks for the support!

F-R-E-E

That spells FREE.... not cred.it report but CHOCOLATE BABY!!!!!!!

Go see my good buddy Ellen at LOVE THAT MAX to enter!!!!


But don't get too hopeful about winning. The good Lord knows I am going to need it after that meeting tomorrow!

What's Going On

Busy, busy, busy.

Let me start with a chair update. All that I have to say is Arrrrrrrrrrrrrrrrrrrrrrrrrhhhhhhh! Insurance really can be a-holes. Tomorrow I send off all the paperwork and should hear in 15 days their denial. I know, way to be positive, huh? I am okay with it.

"What?" you are saying?

Not too fret. Our chair will be paid for either way. Nope, not out of my pocket. The wonderful people who we order the chair from found us a resource. It is for people like us, who work & pay our bills, but can't get SSDI or Medicaid. We should have our chair by mid March. I am very excited. If Ci.gna steps up, the provider will reimburse the charity. If not, we have MM's chair. A win-win situation. I am so very thankful that we are able to get funding from a wonderful charity. I will be writing a letter & sending pics for sure to them. They will be at the top of my list for people looking for charities to donate to. I must also mention all of my wonderful friends & coworkers who badgered the CEO of the DME place to get her a chair as well. It worked! Something to be excited, happy & positive about.

Another positive- CLARITY. We both got a horrible cold (landed me in the hospital for 5 days), but the deliciousness of clarity that comes after illness. I have spoke of this happening before to her. I don't know what it is, why it is, or how, but it is SWEET! Beautiful glimmer of what she would be without ASD interfering.

Guess what time it is?

ANNUAL IEP

Yep, another year has flown by and we are looking at our annual on Tuesday. It was scheduled a few weeks ago, but alas, I was trapped in the hospital fighting off the wheeze.

Now, I am not too nervous. These are getting to be old hat.
YEAH RIGHT!
I HATE THESE THINGS!

BUT, I do have lots of good things to report. Not good for them, but good for us. I am probably going to be retaining the services of an attorney. Can you say "OUT OF COMPLIANCE" big time???? My wonderful, amazing friend who was a special ed major & now a vice prinicpal, is helping me. She said she would do a conference call if needed. Just allow me to high-light a few of the problems we have.

---We signed back in September to have our 3 year re-evals done. We still have not heard about them. We will get them at the meeting. Federal law is 65 business days!

---I asked for the reports prior to the other meeting. Then we rescheduled. I only have 2 reports. I am entitled to them at least 2 days prior to meeting.

---- I was told I could not have one of the reports, but they would go over it with me 30 minutes prior to meeting.

----The wonderful school physcial therapist (sarcasm, sarcasm, sarcasm) did come up with a report. It is the same freakin' report from a year ago. She changed the date only. It still says MM is 5 & in kindergarten! This is the one who says she shouldn't wear her DAFOs to school & should be on a regular ed bus. I am so taking her down. This is MY CHILD'S well-being she is so carelessly messing up. This also, the one who thinks she only needs 30 minutes a MONTH of PT!

--- I have all of this in writing via emails and the reports.

---I am asking for all the anectdotals they share with each other & the data points they collect her goals on. I can almost guarantee it won't be available.

---I will be recording the meeting.

---I am asking for a PC2Go (it is $500) and a program to scan her work. I had to request the AT (adaptive tech) person to be there. They weren't even going to have her! I asked to talk to her back in the meeting & have never heard from her! BS!

My bestest buddy is very confident I have a wonderful case & am excited to get MM what is necessary& appropriate for her to function.

I know this a quick bomb to drop with all of this info. But, as you can see, I am busy, busy, busy getting all of my ducks in a row.