Thursday, September 2, 2010
I am in the process of sprucing up the ol' short bus here (since it is back to school time and all) and I have noticed lots of things that need fixed. I changed the background cause my other one was no longer good. I am not loving this new background. I need to figure out how to make my own. My pics & links that scroll are not all showing up. I need to redo those.
Now, my poor bloggy roll! So many of the blogs I have on there haven't posted in 8 months or more! I have several new bloggy buddies who I check out & would LOVE to add to my list. If you are one of them, please give me a shout out in the comments. I will add them. This also gives me a better way of keeping up and ability to drop by to show some bloggy love! I think I might divide up my bloggy roll into different categories. I have so many that are fellow parenting bloggers & not just all SN. What do you think?
Are any of you experienced at redesigning blogs? Do I need to get someone to do it for me? I am not super fancy, nor am I super popular. I do want it to look nice & improve it. THANKS!
And in the spirit of the sprucing up, I am trying a few new things to maybe get my blog moving even more. I joined this thing called a Blog Hop. I have never heard of this until I saw it on one of the blogs I frequent.
So, now I am a member of Autism Blog Hop.
Friday, August 27, 2010
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!
Saturday, August 14, 2010
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.
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!
Tuesday, August 10, 2010
He was MIA for over 20 years. He then got in contact with my older sister. She clearly remembers him, she was three when my mother & he split up. They were already separated when I was born, got back together & then went their own way. I met him back then, about 15 years ago. It was very awkward for me. I already have a dad and this person appeared for a weekend & expected to be as such. I never spoke with him again after that. My sister has maintained contact with him and developed a relationship. The relationship between my sister & I is often tenuous. We didn't talk for a long time as adults. We have reconciled & I try my best with her. However, I feel she compartmentalized her relationship with our biological father from me.
When MM was born, she and I were not talking. (That is a whole other story to be hashed out some other time) MM was a secret from the biological father for a long time. I didn't have any relationship with him. I also didn't feel it was important. When my nephew was born, I guess he assumed it was his first grandchild. Things were fine by me. My sister continued to feel a need to keep her a secret. I could care less either way.
Then along came F.ace.B.ook.
Being friends with my sister, she friended his two daughters (yes, I know they are my half sisters, but I need baby steps with this...) & his current wife. They could see posts & pics (I wasn't savy on how to make things private like I am now). She asked if I cared if they friended me. I didn't mind. My biological father also friended me. Fine. He then found out about MM, that she existed, his FIRST grandchild. Still fine.
I have tried my best to foster a relationship with him. I don't really think it is a familial one, but it is semi cordial. I feel like the more people in MM's life that know her & love her, the better off she will be. He has sent her two packages, I sent a few pics. I occasionally chat online with him & sent a few texts. I have put forth the effort and feel I have done all I can. The ball is in his court if he wants more, but I am not reaching out any more. He was the one who pursued me. I don't feel like I have a void in my life.
All this history leads up to the following:
My sister told him about MM's disabilities when he first found out about her. Things have been said or done that really rub me the wrong way. I know people mean well, but the best of intentions...
I posted about having a bad day yesterday & feeling bad. He texted me to ask how I was doing (btw, I have not heard from him in over a month). I just said I was tired & life was kicking my butt right now (have had several trying ASD days in a row). He txtd back "cheer up, I have days and weeks like that".
That just pi$$ed me off to the hilt. YOU do NOT have days like this or weeks. YOU had four healthy daughters, two of whom you ignored for years. YOU don't know what it's like to be exhausted from ticks, meltdowns, the constant needs of self help, having a 7 year old functioning like a 3.5 year old,worrying about paying medical bills, going to therapy, making sure you are doing enough for her, fretting about IEPs, fighting the school, the constant stares in public, the mental & emotional beat down etc, etc. YOU don't know how hard it is to walk around with your heartbroken cause you can't fix or stop what is going on. It will not change. It will not go away. You have never seen her, spent 1 minute with her, let alone a day.
So, sorry if I don't cheer up immediately. I think I am entitled to a pity party every now & then. They don't come as often as they used to, but they do come, especially on super trying days like the last few have been. If you really knew about our life & really wanted to be involved in a true grandparent role, then you would know. I am sure you meant well, but no.
You do NOT have days like this. You NEVER will.
Thursday, July 15, 2010
MM is doing well at home. She has made a few subtle gains. I am very excited about this. Any gain is a good one. We have been stagnated for so long, that I am doing the happy dance about them.
She is only doing two days at a summer program, one day with therapy and one day with her baton lessons. Otherwise, mom & I are working with her. What. a. difference! Her behavior has been quite good, ticks/stims way less and just an overall sweetie. I see her little personality peeking out through the ASD and she has a wonderful sense of humor. She has even made some jokes.
After talking to my friend (who is a special ed teacher), she said maybe the school day is too long for her. I am wondering if she is right. I have the girls at therapy documenting her behaviors, gains, etc during summer break. Once school starts & we see how things go, I might consider decreasing her day. If she is not making any gains because the day is too long (too much going on, too many interactions, etc), then I might shorten it.
We haven't really done much else. Life has been kind of boring, but boring is good. I have been slack on the blogging/being a blog buddy front. I guess I have been on a blog break. I said it before, I have a bunch of posts started. I'm just not sure I want to finish or publish them. They came from when I was in a dark place. I am back in the light now. Depression is such a miserable thing. Hiding it is even harder & worse.
Love & light to all of you. I'll be back to commenting before you know it!
Thursday, June 10, 2010
Wednesday, April 28, 2010
Monday, April 5, 2010
Went on a mini road trip this weekend. Very stressful, but made it there & back.
Still fighting with the school.
Got the wheelchair last Wednesday. She is a pro at it already. I know DH hates it, but it is such huge help already. He will come around eventually.
We've all had colds again too.
Computer crashed, had to totally clear the thing & start fresh. Those viruses suck.
Work is HORRIBLE! I want to quit so bad, but can't afford it. I am on the look out for a new job.
Been a bad bloggy friend, but will get back on the horse.
It's Autism Awareness Month.
That is all.
Friday, March 12, 2010
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.
Tuesday, March 9, 2010
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.
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.
Sunday, March 7, 2010
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).
Friday, February 26, 2010
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.
Sunday, February 21, 2010
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.
Saturday, February 20, 2010
We actually got a pass to the Give Me a Break Line for now! Woohoo!
Thursday, February 18, 2010
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!***
Wednesday, February 17, 2010
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
Are we going to go Wally World?
Sunday, February 14, 2010
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!
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:
No, I am not Ally. She is the one who posted on my blog.
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
Saturday, February 13, 2010
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?
Tuesday, February 9, 2010
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.
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!
Monday, February 8, 2010
Sunday, February 7, 2010
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?
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.
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.
Sunday, January 10, 2010
Yes, you have been my insurance carrier for several years now. I pay out the nose so I can have decent insurance. I do not understand you in any way, shape or form. You so easily pay for some things and fight, deny, fight, deny other things all under the guise that my employer is asking you to do this. I will not take the most recent coverage denial lying down.
We were fitted for a wheelchair back in September. Who WANTS their child to need one (unless they have Munch.hausen by Proxy)? It was a life altering, traumatic experience to realize that my child will need one and come to the decision to get fitted. I find it truly crappy that you send us the paperwork for denial two weeks before we were supposed to get the chair. It is crappier that you sent it addressed to my child. She is only six and does not understand the ins and outs of the insurance BS you put us through (although she might be able to make sense of your nonsense in her world). It is the crappiest that it was right before Christmas.
What part of Spastic Diplegic Cerebral Palsy do you not understand? Yes, she walks. She doesn't walk far or well for long periods of time. We can't make it through the grocery story, let alone Walmarx, the mall or downtown parking to get to dr. appointments with out her needing to be carried or ride (in her stroller which if for babies, she has NO independence in that). You have paid for her Mac.laren Major with insert, her multiple DAFOs, her weekly therapies and numerous dr. appointments.
Yet, you deny her wheelchair for ridiculous reasons. Quotes from the letter:
=The individual does not have a disease process or injury for which weight-bearing and/or ambulation is contraindicated.
=The individual does not have a disease process or injury that precludes use of the lower extremities
= A seat width and/or depth of 14 inches or less is not recommended
Again, what part of Spastic Diplegic Cerebral Palsy is not understood??? As far as the smaller seat width---- she is a small child! DUH! DUH! DUH! They also do not want to give us a light weight wheelchair cause the caregiver can push a standard chair. I can, but she is, once again, a small child and we are hoping she can gain independence by maneuvering herself.
As I said before, I will NOT take this lying down. You ruined my Christmas and have started off my New Year on a sour note. I guess filing multiple back injury claims will help? I am filing every appeal you give me, already at the third level. I have gotten the CEO of my hospital involved (yes, I work at a hospital that has multiple people disbelieving this as well). A basic pediatric wheelchair is NOT a luxury for us, it is a necessity.
Ci.gna Insurance, you suck! F*@k you very much for you inattention to this matter.
Thursday, January 7, 2010
Ellen, one of my fav bloggers, has posted a very interesting question. It is so provocative that I feel like my answer needs its own post. I was reading the answers on her blog & felt like I would put the "harsh on the mellow" of the responders.
Am I scared to have a second child? I am "turdified".
My risk of pre-e is so high that I would probably have another preemie. Not just another preemie, but one more premature than MM. I feel like we were very fortunate with our NICU stay and don't really want to tempt the odds. Yes, she has CP as a long lasting reminder and they still don't know why (was it lack of nutrients in utero, was it lack of oxygen during labor, did it happen after delivery). My pre-e was quite severe. I have so many problems now with my blood pressure that I can't imagine risking my life for another little one. How is that fair to DH & MM? I know I would be on bed rest from very early on. Again, how is that fair to the tiny family I have now? I need my job, MM needs her therapy, DH needs a partner (no matter how poor of a job I have been doing), etc.
The whole autism thing plays into this as well. They still haven't found the cause or if it is truly genetic. I don't want to bring another child into the world with the potential of having ASD. What if I had a boy and he was more affected? Yes, we are very lucky with how well MM is doing and her functionality. I hate that she has to struggle & fight every day to make her way in this world.
I read of those who went on to have a second and it helped them. It all worked out and healed them of all the trauma they had from NICU, etc. When I envision having a second, I don't see all that happening for us. Is it cause my judgment is clouded by my own issues (depression)? I also read of how another has helped the older SNK. I totally can see that, but is the age gap too large now?
I am a realist and look at the odds. The odds are not in our favor. I love to gamble, but I try to be smart about it. I wouldn't bet on these odds with money, why take the risk with another life and risk our family as well? People say "adopt or get a surrogate". Surrogate would carry our DNA, so still risky. Both of those options are quite expensive too. We have spent a good sum of our savings on ABA & other therapy for MM. We just don't have thousands of dollars sitting around to adopt.
That doesn't mean that part of me doesn't say JUST DO IT! (although we can't just do it, it takes work for us to get pg & stay pg) Don't worry, just go for it. What will be will be. I have done it before, doing it now & it is working out. My heart does feel an empty place, yearning for more children. I always wanted a houseful of children. I know that wants & needs are two different things. I need to take care of the family I have and enjoy the child I have now.
And would some one please tell MM that she is not having a little sister? She keeps saying that over & over. She also told the teacher she has a baby brother named Patrick. These statements don't help me stand firm in my decision! .
So am I scared? What do you think?