Wow, busy busy week. In preparation for my upcoming IEP (Individualized Education Program) meeting this week, folks from the school district came to my speech and OT appointment to observe me on Monday. Life in a fish bowl....weird. Tuesday dad was in Sacramento testifying as an expert witness for the state. Mom, Nixi, and I went to Target and I walked in on my own two feet! I semi-free ranged it because we needed milk and pretzels, and while it was overwhelming...I did a pretty great job! Had a rough time at the check out, but I walked out of the store all on my own so...SUCCESS! My speech and OT appointment on Thursday was the coolest. My therapists know how much I love fish and ocean stuff so they covered the therapy room in pictures of things under the sea. It was so amazing. They even had stuff on the therapy equipment so when I went through a tunnel or laid on my back I got surprise pictures there, too! It was SO NEAT!
Nixi had a GREAT day on Thursday. She was seen by the physical therapist and graduated from direct services to consult only. That means she's doing so well that she doesn't need to be seen bi-monthly and she's all caught up in the gross motor department! Way to go, little sis! She has started saying "thank you"("day do") and pointing to things and saying "this is a..."("dis is a"), waiting for mom or dad to fill in the blank and tell her what it is. That's actually exceptionally advanced speech for a 11 month old. So, in speech her understanding and formulation is amazing...the quality still needs some work. She still only makes "b, d, l, y, a" sounds.........apraxia. Once she can get some more letter sounds, they'll be no stopping her! She's getting more and more comfortable with people, sitting on my teacher Lorene's lap for nearly 45 minutes on Friday! What a great week for the Nixer!
We didn't get the RV yet...they're sealing the roof for us and we'll have them bring it to us on Wednesday. Wednesday we get to spend the day with dad because mom's gonna be at my IEP. It should be interesting. For a month or more mom has been in contact with all of the IEP members (school district, regional center, etc.), trying in good faith to come to some understanding before the actual meeting, to keep everything nice and friendly. Unfortunately, we got some insider information that the school district and regional center are planning on going back on what was agreed to. Luckily, we got a heads up...their plan was to blind side us and hope that we'd be so stunned and confused that we'd agree to their new plan. No such luck, suckers! Mom has been researching every law, clause, and provision in the state and federal disability sections so looks like they'll be the ones with a big surprise. Its a bummer. Last thing mom and dad need is to have to waste time preparing to fight for appropriate services for me. See, they don't want to decrease any of my services...they actually are going to propose to increase them. Problem is, the services they are going offer are less quality. They are going to offer a bunch of consult services, and I still need direct services. Its gonna be interesting. At the end of the day, mom doesn't have to sign anything and we plan to retain legal counsel to go back in there with if they can't come up with a plan that is appropriate for me. Lot's of stress, though. So....send us your good vibes for Wed.
On a much happier note, we want to wish our Grandpa Cummings a VERY happy birthday on the 23rd! We love you and miss you bunches. BIG SMOOCH!
To our family, Nixi and I have a request for our birthdays....in lieu of gifts, donations for our home therapy equipment and RV retro-fitting would be amazing. In order for us to get the most out our speech and OT sessions, mom and dad work with us all week at home in between appointments. Unfortunately, the state doesn't help pay for any of the equipment. Dad makes some of it, mom buys as much as she can wholesale or second hand....but it all adds up. Just the visual timers I use ( a neat clock with red on it that disappears as the time elapses..COOL!) are $40 a pop. For our RV we'll need some things like car seats, etc. Every little bit helps....a DVD to keep me and my sister from screaming our heads off = $15.......peace for mom and dad while thy're acclimating to the 34' monster = PRICELESS! Thanx!
So, it will be an interesting week this week. Can't wait to update you next week with the results of my IEP! Have a great week!
xoxo
Saf
P.S. No video this week, but we'll be sure to make up for it next week!
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