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:
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.
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....
6 years ago