We'll save all the dirt for next week........tonight we're just gonna celebrate the magic of Halloween! Why ruin a GREAT night! There's lot's of video 'cuz mom and dad are nerds and couldn't stop shooting at my school carnival and dress up day. So, enjoy.......and check back in next week to get an update on my Speech/OT evals, and to hear about my first school progress report!
I had my early intervention up at the therapy center and Saf and I had a blast...as usual. On Wednesday I had a pumpkin patch outing with the early intervention crew. It was super fun! They have these things filled with dry corn kernels that you can play in. I LOVED it!
Saf had a rough week with school. She was crying and saying "no school" from the minute she woke up. Tuesday she was able to get there and Teacher Jenn helped her into class. Wednesday she refused to get into the car, going down in the kitchen screaming and crying. Mom and Teacher Jenn decided it would be best if we all powered through it, so mom had to forcefully put Saf in the car. Poor mom, Saf was panicked and grabbing mom's hair and kicking her in the head while she tried to buckle her in her car seat. A five point harness is not always your friend, turns out. On the drive to school Saf was kicking the window and screaming and mom thought it might just break. Once Teacher Jenn helped us into the classroom Saf did an amazing job of calming herself just like she did last week. Thursday was a field trip day to the pumpkin patch, and Saf's hardest day yet. Started the same as Wed. with mom having to put Saf in the car. This time, no matter how she tried, Saf couldn't seem to calm herself down. Teacher Jenn carried her on the bus, screaming and crying the whole time. Panic doesn't quite cover it. Mom and I drove behind the bus so we could go, too. Once we got there, Saf was still really upset. At one point mom saw some furry caterpillars and grabbed 'em. Once she showed them to Saf, she used them to lure Saf around the patch..."Ooh, let's show the caterpillars the corn!"...etc. It worked to an extent. In the last moments, once Saf knew we were all leaving, she hugged Teacher Jenn and was happy as can be. Really rough time. A low of all low's.
However, on that same day I had my highest of high's! I played with a boy from Saf's class in the corn. That is the first time I've ever played with a kid other than Saf. I looked at him a few times, so I knew he was there, and we put corn in a bucket together. Big deal....SUPER big deal! Mom about cried...but I suppose she was all cried out. Great time!
Friday we had Saf's BIA consultant over. We haven't seen her since she did the evaluation for services...months ago. She's really neat and we all like her alot. Mom talked to her about Saf and they picked apart the school problem piece by piece. They think they have it figured out. See, kiddos with autism are pretty particular about the way things are...I think its called rigid. Anyways, Saf was doing great at school until they changed themes...from farm in September to Halloween for this month. Basically, she went to school one day with all of the farm decorations and songs and stuff....next day, everything was different. The class was filled with Halloween stuff, songs, etc. Saf needs a beginning and an end to be able to move forward. If she is unable to get closure on things she gets stuck. So, mom called Teacher Jenn and she agreed. So, this week she'll bring out some of the farm stuff and the kids can say "good bye" to it. The following week, the kids will help put away the Halloween stuff and get a preview of the Thanksgiving stuff. Every month they'll have a transition ritual to the next theme. I bet that'll help Saf a lot! Fingers crossed.
So, this week will be an exciting one. Saf has her speech and OT evals at the rehab center, and Thursday is Saf's school Halloween dress-up/carnival day. Dad is gonna take that day off and we all get to go. I get to dress up, too! On Halloween dad is gonna go in different rooms of the house, we'll get to knock on the doors, say our "trick or treat", and we'll get goodies! Practice for the real deal some day! Make sure to check in next week to see our great costumes! HAPPY HALLOWEEN!
We had an exciting week! I've been feeling a little off because I hadn't had a real bowel movement in 3 weeks. I was withholding it. Not too comfortable.
So, I had a rough time on Monday and Nixi didn't get to go to her session up at the therapy center. I just couldn't get my act together. We have a list of "no no's" in the house...no hitting, no kicking, no pushing, and no yelling. If we do those things after getting a warning we have to go in the bedroom and chill out for a few minutes. I was all about the yelling...so I spent a good part of the morning in and out of the bedroom.
School was good. I had a rough day on Thursday, my roughest yet. When we got to school I had a major meltdown in the parking lot. Mom got me to the entrance of the school and got Teacher Jenn to come out and carry me to class. Mom and Nixi hung out until I was ok..about a half an hour. I did a really great job of calming myself down. I just sat on the ground hugging my knees with my head down crying and saying, "mommy". I took lots of deep breathes, and when I was calm I asked mommy for a hug and then I was good to go.
Nixi had a GREAT meeting on Wednesday with her new OT. She was everything we could have hoped for and more. She was super nice and super knowledgeable. We will FOREVER miss our first OT, Christine, but at least we know now that we'll be ok. She's gonna help come up with a really great sensory diet for Nixi (I'll do it too), and mom feels super confident that we'll be on our way to a great future.
Our pediatrician referred me for speech and OT (occupational therapy) at a local rehab center. At school I'm only doing speech in the classroom with the other kids, and OT is the same...I wasn't really tolerating going to school on Friday for private sessions because I had a hard time understanding why I wasn't going to class. My speech is improving slowly, but I still speak primarily in one to two word phrases. The sentences I have are, "I want XXX" "are you ok/alright?" "I'm fine mommy/daddy". So, obviously, I need speech therapy...you can't live on 3 sentences alone. In terms of OT: I still choke on some foods, have a self restricted diet, cannot dress myself or put on my shoes (although, I do help), do not eat with utensils, cannot pedal a trike..working on the steering, cannot get in and out of the stroller or car seat, cannot pour myself a drink or drink from a glass by myself, etc. Basically, I don't really have any of the skills I would need to take care of myself. Now, obviously a 3.5 y-o isn't going to take care of themselves. But there are certain sets of skills that need to be developed by about age 5 so that they can be built upon. Life skills. I need those. Well, our insurance company has denied coverage, citing that they do not cover "stuttering, speech inconsistencies..." as reason to deny BOTH speech AND OT. They go on to state that the denial could be reversed "pending an evaluation and appropriate qualifying diagnosis." Mom and dad have never submitted anything to our insurance company diagnosing me with autism. In California, the only services insurance covers in relation to autism is ABA. While my speech issues and motor problems are diagnoses all on their own...once you get a diagnosis of autism they lump all other developmental problems under that diagnosis. If I cannot get the treatment I need I will never be able to dress myself, use a toilet, feed myself, keep myself safe. I will need to rely on others for the rest of my life to help with these basic tasks, never mind more complex ones. Seems hard to carve out a good quality of life, let alone self pride and respect, if I can't get myself a glass of juice or bathe myself and use the potty. Mom and dad asked that the referral be pushed through. They'll have to pay for the evaluations and hope the rehab center can come up with some creative coding, or the treatment I so badly need will all be paid for out of pocket. It isn't cheap. Something has to change in this world. I mean, really, folks. I'm going to grow up...so are all the other 1 in 110 kids on the spectrum with similar struggles. What's going to happen to us then? Who's going to change our diapers and get us our juice when our moms and dads are gone? Who's gonna pay for that...and is it possible to pay someone enough to provide that level of intensive care in a loving and patient manner to a total stranger? If someone don't take care of me now and give my mom and dad the tools that they need to help me, who will take care of me when they are gone?
I have autism. This inherently makes my view of the world cloudy and a bit confused, but I can say without question that there are a few things that I see clear as day and with no confusion. This world I live in is far to often unkind, judgmental, dismissive, dehumanizing, and at times cruel. I also know this, I am not unkind...sometimes confused, but never unkind. I am never judgmental...as far as I'm concerned, you're all scary/confusing/mesmerizing/beautiful. I do not dismiss anyone...human or animal, for I know you may have something wonderful to teach me. I do not dehumanize...as I am painfully aware that if anyone at times feels/seems un-human, it is me. I am not cruel..if you are upset, I will put my hand on you and ask if you are ok. I love.
What world do you live in?
Saf
Playing out front with our new trike!.............
Check out Saf's well-rehearsed school picture smile.............. .....I chose to go for intensity.
What a fun week getting to know our new kitten. We've changed his name, again...Saf keeps calling him Kitten and I call him Kitty...so his name is Kit! Kit is so much fun. Mom bought us some magic kitty wands...when we wave 'em, Kit comes running. Its really fun...even though it freaks me out a bit. He's really fast...you never know..he could be going for the jugular!
So, mom forgot to update everyone on my MRI and blood work. Everything came out fine. There is no organic cause for some of the things I have going on. What does that mean? Ok, so mom and dad took me for all the testing to try to find alternate reasons for some of the things I'm struggling with....as most of them can be autistic spectrum (ASD) related. Let's take my low muscle tone. While hypotonia is not a diagnostic criteria for ASD's, it is often seen in kids with ASD's, and may be due to the sensory processing quality of ASD's. We all know I have sensory processing disorder (SPD), but SPD doesn't account for some of my other struggles. Most kiddos my age are generally pretty happy, with bouts throughout of the day of unhappiness. Seems I can't quite get a grasp on the ever elusive happiness deal. Sure, I have happy bouts throughout the day, especially when I'm hanging out with Saf...but they're never lasting and they seem to only happen when someone's really working at making me happy. My baseline is pretty much unhappiness. Unfortunately, lately it seems as though I'm getting even more unhappy. I'm starting to have some pretty big meltdowns...so bad that last week I broke capillaries in my eye from screaming so loud for so long. I'm starting to get really particular about things, like if I see mom break a cracker before giving it to me I get really upset and can't seem to feel better unless she gives me one that hasn't been broken. I've started, on occasion, lining things up. I'm doing a good deal of toe walking, and I really like to walk in circles and crash into things. When we're out and about, like at the park, I prefer to play with sticks and stuff and I get so into looking at them that I don't seem to notice other kids and stuff...even when I'm being touched by them. If I do notice other people, I'm generally pretty uncomfortable and try to get away. I've been repeating words and phrases over and over to myself throughout the day. In general, I'm getting a lot more rigid about the way things have to be for me to feel ok...and when they're not, I'm getting a whole lot more extreme in reaction to it. What this all means for me, who knows. But mom and dad, as well as the people working with me are pretty sure that I'm on the spectrum...its just a matter of where on the spectrum. Time will tell, I just hope I can work with mom and dad and everyone to get myself real happy...that'd be cool.
So, that's that.
Saf had a GREAT week at school. They did school pictures and Saf's teacher said she smiled super big for the camera! Every month her class has a theme...last month was farms. This month is Halloween! She'll have a fieldtrip to the pumpkin patch, and a Halloween carnival at her school...I get to go to both! It's gonna be so awesome!
This week I get to meet the new Early Intervention Occupational Therapist (OT). She's supposed to be really good, and she used to work at the Mind Institute at UC Davis...one of the premier research programs for autism! Can't wait to meet her!
We have a big week ahead, catch us next week to see how it all went!
Peace Nixi
Some clips of loving the new kitty.....
I love him...and where he goes I'll follow.......
Sunday, October 3, 2010
So, long week....Nixi and I are seriously struggling with allergies. Poor kid sister has another sinus infection, too.
We had fun during the week with all our activities. I even ended the school week with NO TEARS going into the classroom and NO TEARS leaving. Pretty awesome. I also gave my teacher a hug and got my snack out of my backpack all by myself.
We had a garage sale and Nixi and I ended up doing demonstrations for prospective buyers with most of the stuff dad had hauled onto the driveway. We sold over $300 of stuff in 3 hours! Not bad!
On a bittersweet note, we had to rehome our cat Mustafa. Unfortunately, he was just never gonna be able to get along with our dog and it wasn't a fun or safe situation for all involved. Mom found and AMAZING woman in Bakersfield that was willing to foster him while looking for his perfect home. She also told mom she had the perfect cat for us, 'cuz mom mentioned how bummed she was that Mustafa couldn't be our therapy cat. Mom went down there today, and not only did Mustafa seem pretty ok with the whole deal........but we also got a new cat! His name is Sid and he's a kitten. From first meeting him and the dog are like peas and carrots, and our 13 year-old cat likes him too. I LOOOOOOVE him, and he loves me. He freaks Nixi out, but really, what doesn't freak Nixi out?? So, all in all, looks like he's gonna grow into a fine therapy cat and best friend!
So, that's our week in a nutshell. Hope yours was great!
