IEP Update

Well, it most certainly went better than I thought it would. The OT was actually much nicer in person. She had a lot of good suggestions. She also did some research in talking to MM's past OTs and ***GASP*** she actually went back & read MM's file! Imagine that- did some digging about a person you are caring for! They had already ordered her some more adaptive things like an elevated surface with a clip at the top to hold her work as well as some writing implements. They are also going to do the Wilbarger brushing again with her at school to see if it helps. They are also going to get an AT (adaptive technology) eval for her- FINALLY!!! She will get her keyboard & other things so she can "write". They think that her "disabilities" are getting in the way of her "super abilities". They are going to concentrate more on tapping into her "super abilities" and see how far she gets. For example, she is going to start the kindergarten reading & math curriculum. When I posed the question about what are they doing to help advance her education, the principal agreed. She wanted to know why that wasn't already being done. They feel she is bored since she is reading & they are talking about "this is the letter S- see S- S goes sssssssssssssssssssss". When the rest of the class is working on that, they are going to take her to a different area in the room & work on more advanced things. They will continue to work on fine motor grasp & such, but are going to teach her the keyboard for work like spelling words. She still does not make lines consistently, let alone trace letters or anything like that. They are also going to work on more self feeding with utensils, if they can get her to eat. She has really become a nitpick again with food.

They all agreed that she has some massive splinter skills & is at 19-21 months in some areas & in the 5-6 years range for others. They also said she is such a puzzle to figure out. She doesn't have a large number of problems that some kids with ASD or CP has; what problems she does have are severely hindering her progress. I like what they said about focusing less on her "disabilities" and tap into her "super abilities".

I also talked to the principal about the bus situation. It did not show AGAIN today until 7:20, when she should be at school. This is the 5th time this year. She had no idea the bus wasn't showing up. She agreed it wasn't appropriate and filed a formal complaint. She said if the regular ed buses show up on time, why can't the sped one? I agreed & so hopefully that will be another issue solved.

Now, we only have to get through the physiatrist appointment tomorrow & then we can think about vacation! (which we are attempting to venture away from home starting Saturday)

Today is the Day

UGH! Today is the day- the dreaded IEP. I am so not looking forward to this. I hate confrontation when it comes to my child. I just can't imagine that this OT has changed her ways overnight & will be miraculously reasonable. I could be wrong. I have EVERYTHING crossed that is will go well. I can't hold my breath that long. It is at 12:30, so if any of you who read this happen to notice the time, could you say a little prayer for me? I need to be calm, collected, assertive, passionate, use the right wording & NOT CRY! I'll let you know how it goes...

Time Flies

Can't believe it has been almost a month since I last wrote here (not that I have been doing this that long, but it also means I have not been posting on any message boards as well). Sometimes things just get so hectic & time gets away from me. I am just astonished that it is October! Of course, we have a lot going on. This month also is appointment time =P


Let's start with the good news:



We got our AmTryke! It is awesome! We are so excited to have her out there riding it. The weather has finally broke here and it is low to mid 80s so I can actually do things like take her to the park to ride. She doesn't get very far yet, but she does try. She tries really hard when she is motivated to do something like pick flowers or play "kerplunk" (throwing rocks in the river or creek to hear the "kerplunk" sound).

We have also gotten new DAFOs

I didn't realize how much she HAS grown in the last year until you see her old ones next to them. They are similar to the other ones, they just raised them up to nearly under her knees. Hopefully this will work with some of her knees turning in & giving her the A frame stance.


The bad news:

SCHOOL

The friggin' bliggin' @#$%@#%@#$%^&&**@##@% school system SUCKS! I am so sick & tired of fighting all the time. I finally spoke with the new OT & she started off the conversation with "Let me tell you something about MM" in that flipping know-it-all tone. Of course, that made me jump up like a cornered cat. This OT was unreasonable & would not listen. She even tried to tell me that where I have been taking MM for private therapy didn't exist. This woman is Nucking Futs! I finally had to get off the phone (I was at work) cause I was ready to blow. Because she is unreasonable, I now have to sit through ANOTHER IEP meeting on October 17. Woooohoooooo...........................NOT!

The teacher tried to tell me I need to let her know who I am bringing to the meeting. She said she needs to know so she can invite them. That is BS! I have NEVER done that before. I can sign them in when I get there. I think they are afraid I will show up with my private OT or an attorney. Just ridiculous. I truly believe these people try to wear you down & they are used to ignorant people who don't know their rights. I will take them all the way to due process & mediation if necessary.

We are also having problems with transportation. It is unreliable. The bus has failed to show up four times in the last 8 weeks! I called the head of transportion & she said we have to call the contractor. I am going to call him & then I am calling the school board. It is just unacceptable. It throws off MMs whole routine, which in turn makes her day awful. Kiddies with autism need that routine. I am going to be writing some letters as well.

LIFE

With all this BS going on, no wonder I am stressed out! I am also back to battling my old friends D & A (depression & anxiety). It is so bad that I am having asthma attacks from it. YUCK! I just wish you didn't have to fight so hard for what is your child's right. It is hard enough taking care of a child with disabilities & then having to battle the idiots along the way. I know we are just at the beginning of things here, but come on! NOTHING is easy when it comes to this stuff. Then seeing someone on TV like Jenny McCarthy saying all she did was change his diet & Voila! NOT- the media is failing to promote how much she has spent in therapy, over $2,500 a week! Who can afford that??? How about showing the plite of middleworking class people like us who don't get handouts, but can't get a hand up? I understand it must be hard for her as well, but alot of my stress would be relieved if I could totally pay for private therapy, an aid & a private school. However, I can't.

And so I whine....