Wednesday, May 14, 2008

TKO Overturned!




We had that IEP on Tuesday, the 6th. What a nightmare! They almost bordered on the ridiculous for what they were expecting.


First, they wanted to put her in regular ed kindergarten with no support! We wanted her to have an aide to help her- not a full-time aide, but an one there for the time she needed help. We were told that NO ONE has their own aide. We were told they couldn't pay for it. Lies again! She really needs help during fine motor time like cutting, pasting, writing. She also needs help during independent work time because she can't attend without lots of cueing due to her inability to tune things out. We fought & argued. They claimed she was doing well without support during those times- A LIE! She just about has a 1 on 1 aide for those things in her preschool class. She has PRE writing skills emerging, but none really to speak of. They then said she would have consult CDC teacher (classroom for disabled children) 15 minutes a day. No where near enough support! She could have a sensory break if needed. They presented that data that she has moved from a 1-2 year old skill level to a 3-4 year old skill level, with most motor skills at a 3 year old level. They then claimed she would be at the same level as every other 5 year old entering kindergarten! UGH!


Second, they wanted to put her on a regular ed bus. The child who can not walk down steps unassisted & loses her balance so easily to go on a regular ed bus. We asked about her saftey, especially when getting off the bus and the bigger 4th & 5th graders are pushing to get off. They said the BUS DRIVER could help her off! That is against the law here. They also said that sometimes an attendant rides the bus and someone could probably help her off the bus. HELLO!!! Probably & sometimes is not good enough when it comes to safety. We had to remind them she doesn't just have ASD, she has CP as well!


Third, they totally shot down ESY saying she showed no regression. Again, her teacher lied. She has always talked of how hard it is for MM to get back in the swing of things after breaks, long weekends & even the weekend. That was their sole basis for rejecting her. They kept saying they know how this feels & how sorry they were. I went around the table asking each one if they had a child with a disability. They all said no. I then gave them the you don't know how I feel speech because they don't live our life & have never walked in our shoes. I was so angry & upset, I walked out. DH continued to argue with them, he even ended up asking the CDC teacher (who was extremely ignorant IMO) if she was stupid! It was terrible.


We refused to sign anything. They kept trying to get us to sign it, first trying to tell us we had to. I know that is not true. They then kept asking why won't you sign it, we have made such & such accomodations for her. We also wanted another meeting with the county special ed supervisor to discuss bussing, ESY & placement. I had to remind them that by waiting so long to discuss ESY left us in position that they were denying our right to due process since it takes up to 60 days to go through it. I was so angry that I finally just said "It's okay, we will just go to mediation & I will get an attorney." It was over 2 1/2 hours of stress & arguing.


After leaving the meeting, they were calling within in 30 minutes, setting up a meeting for the following Tuesday, the 13th. The supervisor was going to be there. I started researching like crazy & got a hold of the local adovocate. She really gave me great advice. I was ready with my three page rebuttal & all the laws to support the services that are necessary and appropriate to get her what she needs. I stressed all week about this next meeting, I cried so much that I think I had no more tears.


What a difference a supervisor makes!


No more lies flying around. When the meeting started, they immediately told us she would be on the special ed bus still with a 5 point harness since she hovers around the 40lbs weight. Next, they offered us ESY based on insufficient data & her need to have continuous monitoring of her social skills. They are giving her OT & PT over the summer @ the preschool as well. They also changed how kindergarten will be for her. She is going to typical ed with what is called resource here. It is essentially an aide (but she is actually a special ed teacher) for the times she needs it- fine motor times, independent work times & lunch time. We also won't have to deal with the CDC teacher at first! WOO-HOO! MM is considered mild to moderately disabled, not severely disabled. Most of the CDC children at this school fall into the severe, the rest get resource. She will get the 1 on 1 she needs at those times. She will also have a peer buddy assigned to her that will help her. They will use a child who tested high at the kindergarten testing so she has someone who is smart enough to help her. We will have an IEP one week after school starts to see how she is doing to see if she needs more support. I did not have to argue, fuss or even use my 3 page rebuttal. Hmmmm....


WHY? Why did we have to argue so much at the first meeting? Why did they tell us all those lies? Why did we have to have a second meeting? Why was it so easy to get those things once the supervisor was there? Why do they put us parents through all of this BS?


So, see they originally had us down with a Technical Knock Out, but we managed to get the decision overturned & in our favor! I am sure I have another b!tch flag added to MM's school file since we are already labeled a high profile case. I will take the flag & wave it proudly if it gets her what she needs!

Monday, May 5, 2008

Here We Go Again...


We have an IEP on Tuesday.


Yuck.


Double Yuck.


We are going to discuss ESY & placement for next year. I am really torn. I don't know what to do. The ESY is easy, she needs to go to get her therapies and socialize with the children. Placement is another story. I am not sure if I want to keep her in a CDC (classroom for disabled children) with some inclusion or total inclusion with an aide. I have never navigated this road and am so unsure of which way to go. I also don't know if I want to keep her at this school or have them move her. It seems that they just don't know what to do with her. She has such huge splinter skills that they don't know how to foster her abilities while also treating her disabilities. I have been told more than once that they have never had a child like her before that was so smart. I find that hard to believe, but who knows.


Any whoo- I am gearing up for the fight. Please send some prayers and vibes our way as we have our meeting and that I will make the best choice for MM.
On a funny note: MM really LOVES to repeat drug commercials. You didn't realize how many there were or how often they show them until she starts repeating them. She has asked her nana if she "suffers from chronic constipation". She asked me the other day: "Mom, do you suffer from erectile DISTINCTION? (supposed to be dysfunction)" How funny! I answered her "NO" but secretly laughed cause there is some truth to that since bed-dancing is almost non-existent around here!

Sunday, April 27, 2008

Birthday Party at the Giant Rat's Hole


Nice pic I found of the Rat!

Why is that things that are supposed to be simple are not? At least they are not when it comes to ASD and CP. My brother invited us to a birthday party for his girlfriend's daughter- it was at the hell known as Chuck E. Cheese. We talked about it all week & she actually wanted to go. She did remarkably well for how busy that place is. I had to stay with her the entire time while the other adults let their children run and play. They sat around and socialized; I ran interference for my child. She did well until that giant rat came out. It got louder and louder. I ended up sitting there with my hands over her ears. She still kept it together until the very end. It was getting super crowded by then and I was over stimulated myself (I can't believe you can't turn those damn tickets in for valium- LOL). Just once I would like to know what it is like to just be able to go somewhere & know she would be okay. Other kids are running & playing while I had to carry her many places, lift her up to things & help her learn how to wait our turn & put tokens in machines. It just comes so easily to many- I saw 2 year olds able to do these things with ease. ***SIGH*** BUT I guarantee they don't appreciate all the small things like her eating almost a whole cupcake by herself and just actually GOING to Chuck E Cheese! Woohoooo!

Friday, April 4, 2008

APRIL IS AUTISM AWARENESS MONTH


What is Autism?
It is a complex neurological disorder that usually lasts throughout the person’s lifetime. It is the fastest growing serious developmental disability in the U.S. ASD impairs a person’s ability to communicate and relate to others. It can also be associated with rigid routines and repetitive behaviors. It is a spectrum disorder so symptoms of ASD can range from very mild to severe. It affects 1 in 150 children, with boys four times more likely to have ASD, making it more common than pediatric AIDS, cancer & diabetes combined. Right now, there is no cure. Early intervention instruction focusing on communication, social & cognitive skills has been shown to result in significant improvements for many children.

Has it been since February???

Guess I am a bad blogger. Time just gets aways so quickly. Things continue to be hectic here, mainly with my health. MM is doing fine, except for the bout of strep throat with horrible rash she has encountered this week. My health- ugh! Some tests have come back, had more this today. It is looking like part of this is my kidneys & the other is tumor/mass thing is still being investigated. I am very scared, but hope that things will be figured out soon & what course of action to take to get me well.

I have spent the month tagging clothes & toys to particpate in a HUGE consignment sale. I dropped the stuff off today. It really is a good sale cause I will get 70% of my prices, unless they make it to half price day. I had around $700 worth of stuff!!! Yes, you read that right! Way too many clothes & toys, but I also got rid of all my baby stuff like maternity clothes, diaper bags, baby bedding, etc. With the news of my kidney problems, there is no more hope in us having another. We didn't really plan on having another since can't get pregnant without meds, my pre-e was so bad & with all MM has going on, but I still held on to stuff "just in case". It makes me sad to think I really can't have another. Another crappy part of my life- thanks for having bad luck in my health!

Haven't done much for Autism Awareness Month since so much going on. I did pass out ribbons for all my coworkers, wrote an article for the monthly newsletter at work & composed a mass email. I feel I need to do more, but just am exhausted. I guess the daily grind of MM's ASD is enough for the moment. She really is such a sweetie. Her progress is amazing! I still can't believe the progress she has made recently. Her language is developing so nicely- not always script, more spontaneous speech. Her fine motor skills are still poor, but that is CP too. She does have a lovely keyboard at school now. She brought home TWO pages of typed things today! She was so proud & I am too! I LOVE YOU, BG! (which now means Big Girl, not BABY girl as I am reminded by you a few hundred times a day)!

Thursday, February 21, 2008

BIG NEWS & Catching up

First of all, I have been remiss for I have been very sick. STILL very sick. Started off with a virus & pneumonia causing my asthma to go haywire & was hospitalized for the week of Feb. 4th. I had a rough time, including having an allergic reaction to one of the few antibiotics I was not allergic to, but am now. My immune system is messed up again. I am also having heart & blood pressure problems. My heart keeps racing & my bp won't come down. It is dangerously high, even on THREE meds. UGH! I have been off work all this time. I am afraid I am going to have a stroke. They might put me back in the hospital this weekend if it doesn't come down. I feel awful, but wanted to post about somethings as well.

MM also got very sick when I was in the hospital. She had a really high fever for several days. Since then, she has been a different child. How you ask? She is acting like a typical 3 year old (now I know she is almost 5, but it is progress). She has lots of eye contact, spontaneous speech & using pronouns, not talking in third person, minimal stims & flapping, doing things for herself, etc. I can't explain it. It is like a light was just turned on. She is also now OFFICIALLY
PEE-PEE trained during the day! She hasn't worn a day pullup since last Friday- so six days! It is wild.

We had our appointment with the physiatrist today. She couldn't believe it was the same child. She gave me a study about how kids with ASD "clear" with a fever. She said enjoy the moment & celebrate, but it will probably go away. I don't care if it does. I can live the rest of my life with this "5 minutes of something wonderful rather than a life time of nothing special". It is enough to sustain me. It feels great to see her acting & doing like a typical child. She also tested her & she has had a bump in her skills with how clear she is. She tested at 36 months rather than the usual 18-24 months, with some 30 month skill. Almost everything was 36 months!

I feel like I am in a dream & don't want to wake up, except for the pounding headache I have from my blood pressure...

I still need to update about our IEP, but that will be for another time.

Saturday, February 2, 2008

Quick Check In

Knee still hurts... MRI on Tuesday.
Did NOT talk about kindergarten at IEP... too much other stuff to address...
Will post more later, no time right now & I am still ticked off about it. Let's just say I cried alot during the meeting. :-(