Those Dreaded 3 Letters

Yes.
I can't believe it. Time sure has flown by. It's been a year already.

I.

E.

P.


Trying my best not to stress. Haven't spent days & days preparing like I've done in the past. I'm hoping my reverse strategy works & that I come out with more since I went in with way less. Will let you know if my plan backfires.

To all those who are getting IPADS for their children for school use, I am sooooooo green with envy! I can only dream....

Shaky Start, but Ooooo I Feel Lucky Today!!!

Well, per usual, our local school district (lsd--- just like a bad drug LOL) did not fail to disappoint.


Right out of the gate, no bus. The lsd got lucky cause the first day of school, I had to work. They dealt with the hubs. They tried to tell him "if it makes you feel any better, the sped** buses didn't come for about 12 of the kids here". Ummmm, NO!!!! That means that the parents who have enough to worry about sending their children with handicaps off to school had no busing! Sheesh.... so NOT okay. The hubs called & left a message with transportation. The next day, still no bus. They had to deal with me. Ut-oh!!! Mrs.I-know-our-rights-and-am-not-afraid-to-quote-them-or-go-over-your-head-and-won't-take-no-as-an-acceptable-answer-when-it's-on-the-IEP.


Yep, the b!tch is back.


Upon dropping her off at school, I met with the vice principal. She said it was a district thing, not at the school level. I went home and called the person in charge of transportation for special education. I called & called & called. I kept getting VM! Frustrating! I am going to make this long story short, for I spent hours chasing this down. I chewed out the lady who is in charge (but claims she is not), then talked to her supervisor and continued on up the chain. Upon all the calls & investigating, I found out the bus owner did ask why MM wasn't on the list! They claimed they had no paper work. WHATEV!!! The lady in charge was quite rude (hence the butt chewing from me. If you are rude to me, I push back---- HARD! If she hadn't been rude, I might have been content to wait it out for the week. I would have asked for transportation reimbursement, but I could have waited it out) and tried to claim it was a fluke. Not believing that for: 1.) She has been riding special transportation to this school for 3 years, this makes year 4. 2.) The bus owner asked why she wasn't on the list. 3.) This happened with kindergarten!!!! It was a large amount of finger pointing & blame shifting, just like our good bureaucratic system does at its finest.

Needless to say, the bus showed up on day three. Hee hee.... LSD 0 MM 1


As I have mentioned before, MM often has troubles with lunch at school. She doesn't always eat. She also doesn't drink sometimes. Not drinking is very bad as we all know, special needs or not. It is not good for a person to go 8 hours without drinking! We have it written on her IEP that she can drink when she wants. She is very prone to UTIs due to her CP issues & the autoimmune stuff. We are approaching the end of week two. I have been diligently documenting what she does or does not eat or drink from her lunch (long story on this cause the principal claims that they make sure all the children eat and drink when at school~ all except MY child). She has not been drinking ANYTHING from her lunch box. I have asked if she is drinking something else. I never get a clear answer, but I am guessing not because she is parched when she gets home & drinks like a fish. She came out of PT today & they asked if she was getting a UTI cause she kept holding herself. I didn't tell them about her not drinking, they know her & pick up on her cues quite well. After talking to my mom (who got her off the bus), she said she went to the bathroom 5 times in the 30minutes of being home from school. UGH!!! SO, after today, I will have almost two weeks of documentation to back up my concerns. I will meet with the teacher, the school nurse & the principal to get this resolved. WHY oh WHY does common sense elude these people????

MM does appear to be enjoying school so far. The work is quite easy for her so far. They do have her Neo & she is using it. The teacher has sent me quite a few notes as well as some emails. She says she loves having MM cause she is super smart & sweet! She is also behaving quite well.

I have had a week of ups & downs. One of the coolest ups, hence the lucky today, is that I actually won a really cool prize on Ellen's blog! I am super excited to get it! This was the first time I have one a major award and can't wait to receive my fragile package! (lol...Christmas Story reference). Go show Ellen, Sabrina & Super Purple Max some bloggy love! THANKS ELLEN! You are an amazing writer with some great kiddos & some cool give aways!

**"professional" people referring to it as SPED when talking to a parent is a whole other issue!!! I find it to be derogatory & will bring this up to the principal as well ! ARgh!

Back to School

Every where we look, we are inundated with back to school stuff. Advertisements on TV. Advertisements in the paper & online. Displays as soon as you enter the store.

Most parents are excited about the words back to school. The children have been fighting all summer. The children are bored. The parents are ready to send them off so they can relax, get their house back in order and do all the things that are hard to do with children around.

Not me.

MM starts school on Tuesday. I have a huge knot in my stomach. It is keeping me up at night with anxiety. Will this year be better? Will I have to fight as much? Will they follow the IEP? Will she eat while at school? Will she use the bathroom so she doesn't get sick? Will her meltdowns be as bad as they usually are when she starts back to school? Will she make any gains after doing so well this summer? Will the bus driver work out? Will she be able to keep up with her peers? Is this the year the kids start making fun of her or are mean to her?

Don't get me wrong, I am looking forward to getting a break. It will be nice to have most of my days off to do the things I need to without her in tow. She has also had a great summer (up until the last few weeks which I am sure is HER anxiety about the change coming up) and I have enjoyed working with her, helping her make some real gains.

BUT, I am not looking forward to all the BS of school that goes along with having a SNK.

To end on a good note, we met her teacher the other day. I am excited cause I think we might have a great fit. She has been a teacher for a long time and has spent the majority of her time in special education. She has taught a typical classroom for the last 4 years, with a Sp. Ed. child in the room each year. XXXXfingers crossedXXXX that this is MM's year!

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.

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!

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.

The Party, The Bus & Other Fuss

I left it up to MM to decide about the party. She chose to go when she found out swimming was involved. I was so very proud of her for choosing to go to the party. It wasn't as bad as I imagined it was going to be. She enjoyed herself swimming. She swam through the crowds of people. She jumped off the diving board several times. She tried to cannon ball like the men were doing. She tried to give her mom a heart attack by wanting to go off backwards like the men. I am all for trying new things, but I wasn't ready for THAT! She enjoyed whacking the pinata. I only got a little sad a few times. First, when I saw all the other moms congregated talking while their children played with each other. I had to run interference for MM & she wanted me right there with her. Second, when all the children lined up to make their own cupcakes. Of course, they had a blast, getting frosting & sprinkles everywhere. She would have none of that, choosing to leave her cupcake plain & go inside for a glass of milk. The last time was when the pinata finally got opened. All the children jumped on the candy, she got pushed back & then just stood there. I finally reached down & grabbed the pinata to shake out some stuff for her. She doesn't even eat candy, but I want her to participate as much as she can. She was excited to pick up some stuff. She is also not greedy when it comes to stuff like that, only taking 3 pieces. That made me proud. All in all, not too painful. I also got a pretty nice tan out of it- BONUS!

School has started. I took her the first day. It was only a half day. She did well, even telling me she was "settled". I asked if I could go & she said "sure". I picked her up. She kept saying over & over she was a first grader. Day two she rode the bus to & from school. It seemed to go okay. She is very stimmy when she gets home & starving as well. The afternoons have been spent hearing her say "I not bossy" over & over for HOURS! She is not eating all that well at home or at school. This is normal for her until she adjusts. Haven't heard from the teacher which I do not like, but will set up a system with her next week. We will have a team meeting next week to discuss how it is going for her. The OT & PT have been quick to point out the fact she has no DAFOs on her feet. The short bus, which is now a big short bus, backs up the road every morning & afternoon. The bus owner was a little concerned about traffic letting the bus driver back up. He said he would get the police out there daily to direct traffic if need be. All I could think of is: GREAT! It's not enough we have the short bus pulling up everyday to draw attention, now we will have the police too. Thank goodness it doesn't seem to be a problem so far.

The DAFOs are being replaced for the third time. We are going back to what we had. We went yesterday to be recasted. She complained often about her feet being tired. She would even say her feet hurt, which is quite unusual for Miss HighPainThreshold. The PT wanted to have another strap added to them. We had them adjusted, redone, padding added, cut down. They kept leaving red marks on her ankles. The orothotist said no, enough is enough. She obviously still need the extra support, having to adjust them that much is not acceptable for a custom brace, put her back in what she had. The doc was called & she confirmed our decision. Sorry, PT, sometimes Mommy, Daddy & Nana know best. The orthotist is putting a rush on them, so hopefully they will be her next week.

This is getting lengthy, so I will wrap this up with one last thing. I had a comment left a few weeks ago about joining a health community. After being reviewed by the CEO of the site, I was accepted. I am know officially a member of the ASD community on there. See the new button over there on the left -------->? Pretty cool, huh? It will upload my blog posts there for people to read & send them here. On top of being a featured friend and now this, I expect my traffic to pick up even more. I am excited to connect with more people here in the blogosphere. At first, I just wanted my little blog here, in my little space, to have a place to write my thoughts. I have even told some people IRL about my blog that I wanted to keep a secret. I can't believe that people actually want to read these (crazy) thoughts!

She is almost done with therapy. Hurray for free wi-fi so I could update. Working the weekend, so don't be surprised if I am not around.

StressFest '09-'10 (aka School Year '09-'10)

Yes, it is about to begin. She starts Monday. Today was her last day of her summer school.

I think we are ready.

School supplies have been bought. Clothing needs have been assessed. We got a call from the bus owner today. She will have the same driver as last year- we LOVED her. We went by today & met her teacher. We also saw all of her other teachers & aides from the last two years. We saw the classroom. She picked her desk. They have most of her equipment ready for her in the room. They are more prepared this year for her.

I think they are ready.

I am actually excited for school to start.

I can't believe I just typed that sentence. It seems things are starting off on the right foot for once. It is almost too perfect. ::::looking around for that other shoe to drop:::::::

Here's to First Grade!

Sounds Interesting

I came across this interesting article today.

I am not really sure what I think of this. The education system early on is wanting LRE/Mainstreaming. Yet, here is a college doing the exact opposite. I will have to keep a close on eye on this cause we have about 12 years until college. Maybe less with the genius here!

Best Days EVER!

Well, the title might be an exaggeration, but no lie. Today was one of the BEST DAYS EVER in my life since I had MM.

Why?

Please hang with me while I brag.

My amazing daughter. The one who was born premature. The one who has cerebral palsy. The one who they said would never walk. The one who they then said would never walk unassisted. The one who they diagnosed as having autism spectrum disorder. The one who wouldn't be able to be mainstreamed until third grade. Yeah, that girl.

She completed & graduated from regular ed kindergarten. Not only did she pass, she superseded all of their expectations. She did it! I just want to jump up & down & scream with my fists in the air:

HEY WORLD! SHE DID IT! WE DID IT!

She also got an award at the assembly for being the Super Site Word reader of all of kindergarten. She was very proud of herself. Her daddy went & watched her get the award- mommy had to work. A couple of her classmates got citizen awards for always going the extra mile & helping her. She loves those two girls & tells me so along with that they are her friends. They love her. The school has instilled such a sense of community in those children & really take care of MM, encourage MM and make sure she does what they are doing & gets where they are going. Her teacher made an amazing video of the year that she gave a DVD to each student. I bawled my eyes out watching it. My baby is a big girl now. She is going on to regular ed first grade with all of her supports.

This day has confirmed our choices. We made the right one for her & us to mainstream her from the beginning. The children are used to her & know how she is & they love her just the same.

Her second tooth fell out yesterday (finally) after the permanent one has been in, so the tooth fairy came last night. She only left a dollar this time. I am glad cause we go to the dentist for the first time tomorrow. We also go to the eye specialist in the morning.

I am feeling better. I worked all day yesterday & part of today. I leave early on Thursdays to take her to therapy. She had a great OT session. She cut, glued, colored & wrote her name very legibly. She interacted & made astonishing eye contact. She had water therapy. She moved her arms & her legs in a true swimming motion for 5 strokes. First time ever! Her therapist was jumping up & down, cheering. Of course, this scared MM and she didn't do it again.

While I was in the hospital for the week, MM & Daddy came up with a wonderful surprise. Again the kid with all of the above mentioned stuff has learned to pedal a regular bike with training wheels. Wooohoooooo! Watched her do it for the first time Tuesday. Yes, I was bawling then.

She has told me a million times today how much she loves me & daddy & nana & pop-pop.

I got a great evaluation at work which means a great raise. I got a guardian angel award at work for giving good care to someone. It is a very special recognition to get & not very many are given out.

It has been a good week. I know this is disjointed, but I just had to share my great news. This is one of the best days that I will never forget. Honestly, ranks right up there in my top 5 of my life like the day she was born, getting married, etc.

With this, I will leave the lyrics to the song that the teacher used on the DVD. I had never heard it before & I LOVE it. I am going to download it (even if it is by that kook R.K.E.L.L.Y. )


"The World's Greatest"
I am a mountain
I am a tall tree
Oh, I am a swift wind
Sweepin' the country
I am a river
Down in the valley
Oh, I am a vision
And I can see clearly
If anybody asks you who I am
Just stand up tall look 'em in the Face and say

[Chorus]
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the worlds greatest
And I'm that little bit of hope
When my backs against the ropes
I can feel it mmm
I'm the worlds greatest

I am a giant
I am an eagle
I am a lion
Down in the jungle
I am a marchin' band
I am the people
I am a helpin' hand
And I am a hero
If anybody asks u who I am
Just stand up tall look 'em in the Face and say

[Chorus]
I'm that star up in the sky
I'm that mountain peak up high
I made it
I'm the worlds greatest
And I'm that little bit of hope
When my backs against the ropes
I can feel it
I'm the worlds greatest

In the ring of life I'll reign love
(I will reign)
And the world will notice a king
(Oh Yeah)
When all is darkest, I'll shine a light
(Shine a light)
And use a success you'll find in me
(Me)

[Chorus]
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the world's greatest
And I'm that little bit of hope
When my back's against the ropes
I can feel it
I'm the world's greatest
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the world's greatest
And I'm that little bit of hope
When my back's against the ropes
I can feel it
I'm the world's greatest
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the world's greatest
And I'm that little bit of hope
When my back's against the ropes
I can feel it
I'm the world's greatest
[*]It's the greatest
Can you feel it
It's the greatest
Can you feel it[Repeat * while:]
I saw the light
At the end of a tunnel
Believe in the pot of gold
At the end of the rainbow
And faith was right there
To pull me through, yeah
Used to be locked doors
Now I can just walk on through
Hey, uh, hey, hey, hey
It's the greatest
I'm that star up in the sky
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the world's greatest
And I'm that little bit of hope
When my back's against the ropes
I can feel it
I'm the world's greatest

MM, you have made it!

Crisis Semi-averted

The IEP went okay. The area that I thought they would bulk on the most they did not. MM will still be restrained on a short bus. They realized that she can't step up on a regular bus alone (DUH), can't be properly supported on a seat in a regular bus (DUH) and doesn't have the trunk strength or good enough protective reflexes to keep her upright with sharp turns, etc or if there was a crash (DUH). I am quite sure we will battle this again next year, but for now, score one for us. I don't know why they make you jump through hoops for something as simple as her safety.

They denied us ESY. Even though the teacher recommended it, they said she did not need it educationally. I still have time to think on this one. The summer program they have offered the last few years was okay, but not great. (The only great thing was the teacher. It didn't offer enough to really help her and it was in the worst part of town. Seriously, a crack dealer was on the corner there in the mornings) We are going to send her back to a mother's day out (MDO) group that she went to last year. The lady that runs the program actually came from the special ed preschool she went to. They take all ages in the summer & do lots of fun things. They also all did a wonderful job caring for MM last year & adapting to her needs. Honestly, they did better than her teacher this year, IMO. I like the fact that she won't be tied down to school per say & we will see how she does. She can go to the MDO when we want or we can not send her. With ESY, they take attendance. If she does not do well when school starts, then I doubt they will deny it next year.

I still can't figure them out. One would think after all this time (3 years in the county) I would have some understanding. I don't. The things I think they will give a hard time about, they don't. At the annual IEP, the bus was a huge battle we were fighting. They just wanted her on regular transportation, no supports or anything. They did a total 180 with that. The ESY I thought was a slam dunk. Wrong!

Thank you for all your kind words of support & great advice.

One more thing. If you get a chance, can you send up a prayer for DH. We had to take him to the doctor today. He had to have an EKG & lab work. He has been having weird spells. They don't think it is his heart. He didn't see our regular doctor either. The fill-in seems to think it is stress/anxiety. I am hoping that is all it is too. I think he has needed help for a long time & is now finally at his breaking point. They gave him a script too, so he is joining the xanax for lunch bunch. Please pray it is something simple. I just can't take any more bad news. I really can't (for i too am beyond my breaking point. i think it is why i can't get well myself).

Crud

That is how I feel like. Once again, the rotten sinuses have gotten the best of me & moved on down into my chest flaring the old asthma. Yuck.

We have our IEP on Tuesday morning to discuss the ESY & the bussing issues. I hope we can come to an easy resolution. I got some great advice from some wonderful people in addition to a letter from the doctor. Can't see how they can turn down the ESY. Her teacher said she needed summer school at the parent-teacher conference a few weeks ago. The bus is another story. Yuckier.

MM has been really out of sorts. Some of her old "ticks" are back as well as the new ones going strong. Feeling poorly, I am out of patience. I hate that, but I feel trapped by her ASD. This weekend has just been a bummer for me. The weather was nice, actually too hot when you have a cold type thing. I hate that I feel like this. I don't want to be trapped by this. I just need to figure out what is going on with her & help to quell the stims. Yuckiest.

Btw, we ran to Tar.get the afternoon. I heard something that made me so upset that tears started to well. It put things in perspective for me. A cute little girl, probably about 4 was saying "who is going to carry me & hug me now?". Her mother replied to her "just shut up. you are driving me crazy. you don't need to be loved on all the time". WHAT?!? It was all I could do to not tell her to thank her lucky stars her daughter was asking to be loved on and wanting to interact with her. She had a wonderful, healthy, neurotypical child. I wish my child would ask me for that instead of asking for directions for the 5 millionth time of the day. DH was with me, so I bit my tongue.

Yuckiest beyond yuck.

Alrighty Then...

Does THIS mean that I won't have to fight, argue, cry, etc to keep my child on the appropriate bus & get her ESY this year? We have another IEP meeting on the 28th to discuss these things. I can't wait to hear what they have to say. I am getting well armed with some great advice from some super advocates. Anyone else having any advice, please let me know. You guys are the best!

(An aside here- I know I never posted the update from the meeting earlier this year. One of the crazy things they want to do is put her on a regular ed bus. A child who has CP & wears DAFOs along with ASD who is beyond easily distractable. They are such idiots, I swear. I am prepared to take this to the media if I have to, especially with it being Autism Awareness Month & the recent problems our county has had with ASD kids & lawsuits being filed against the school system due to major compromises in safety. I need to post all about this when I get a chance. Don't know when I will though with the lappy being broken)



My computer is very, very sick right now (I stole my mom's lappy). I don't know what is wrong with it. I have done everything I know & it looks like it will be going to the ge.ek squ.ad this week.

Not to keep you in suspense

IEP went okay, not great, just okay. There are a few things I am not very happy about. We will be having another meeting. I will update later. I need to decompress. I hate these damn meetings. I hate having to go through this. I want to scream, cry & stomp my feet that this isn't fair.

Manic Monday

I have a lot going on.

First, MM goes to the ENT on Friday. I am sure she will have to have those monstrosities known as tonsils removed. Poor thing is still not eating great, nose running constantly & lots of coughing. We are almost done with the antibiotics & I am sure by next week she will have the reoccurring infection. (Not feeling very optimistic this morn)

Tomorrow is the rescheduled IEP. Need I say more? Those yahoos still did not even give me the evals or reports! Thanks for all the advice you guys have provided. I am reading it & taking it all in, evening adding it to my notes for the meeting. I am going to give them the benefit of the doubt, as I try to do, but am sure I will be upset as usual. (again with the pessimistic view)

They scheduled MY sinus surgery for Feb 11. If I do not have it done then, I will have to start all over & have a different doc do it. The wonderful doc I found is relocating back to where she came from. Sux for me! It really has taken me a long time to build back up the courage to go & make the decision to have this done. The last time I had the surgery, in 2000, I got septic & almost died. YEAH- good times there. I need this done though. It will hopefully help my blood pressure, headaches & just generally improve my life so I don't have to deal with chronic sinusitis all the time.

I have to get MM's other appointments scheduled or rescheduled (eye dr, developmental specialist, 6 yr check up, etc.).

BIG news here too. My baby has a very wiggly bottom tooth. I will try to upload the video of it. I am sad & glad for she growing up.

We (DH & I) are going through an autism sux phase right now too. We both are in a bit of a funk cause these illnesses have really set her back. Lots of regression going on, has gone on. It is not just he autism stuff either. Her legs are so stiff & she lost some of her good gross motor gains. He, who is usually so positive, is just as anxiety ridden as I. This is so darn hard.

Did I mention I had my annual girlie check up last week? That will have to be for another post. I just can't think about it right now.

I know so many of you here in blogger land are going through just as much & many much worse than we. Where can we get in the "Give Us an Effing Break Line"?

(tried to cheer up by adding the valentine stuff to the blog. I LOVE valentine's day. it is such a cute, made up holiday. even dressed the girlie in valentine's attire this morn. I know it is early, but how can LOVE not make you smile?)

SNOW DAY!

IEP cancelled cause, in the south here, a smidgen of snow calls for the closing of schools. God intervened & took care of my dilema about the no reports. Once again, a reminder that I need to "let go & let God".

About the reports not being done:
One of my IRL friends brought up a great point (can I add she has a special ed degree & is an assistant principal) that what are they going to do on Tuesday? Were they all going to run in there first thing this morning & bombard her to get the reports done before 10:15? I am curious to that answer too. It will definitely be brought up as part of the request for records, they need to let me see them part of the law.

Thanks so much for all of your support! I have stressed myself sick, literally. MM is still under the weather & we are heading back to the pediatrician.
Now, I just have to wait for the reschedule.

Need IEP Advice/Help Badly!

I sent an email this past Monday, asking MM's case manager for the reports before the IEP which is Tuesday. There is no school Monday due to MLK day. MM is was very ill today. I sent an email asking if I could pick them up today. She sent me an email telling me they wouldn't be done since MM was absent today and they will be available for review at the meeting. WTF? They were waiting till the last possible minute to get them done? What would you do? HELP! What are my rights here?

I am so pi$$ed off right now! I can't see straight! I just got to the email this evening since MM has been so ill!


P.S. An aside here, her absence will be excused cause children didn't have to attend today due to the single digit temps. They had no clue she would be absent due to illness.