We had a great week! We were all still getting over the cold, but that didn't slow us down one bit!
Mom did the phone intake for STAR Center. We have reservations for July 19-August 4th, we come home, and then we go back September 7th-16th. They have us come home in between treatment to let everything "sink in" and to give us a chance to try applying the things we've learned in our normal environment. It's really exciting! They even have a feeding clinic that I'll do some work in during the second visit. This is gonna be so cool! People come from all over the WORLD for treatment there! Now, if mom and dad can just find an RV. They've been looking but it turns out people aren't so honest about their RV's and we've had some big disappointments. I'm sure the right one is out there just waiting for us to find it!
I had my first full week with our new programming schedule and it went ok. I guess I just have to get used to the changes. Starting this week, I'll be up at the treatment center for speech and OT both of my scheduled days...that'll be FUN FUN FUN!
Nixi had her first physical therapy appointment and she was super good with the therapist! She even let the therapist give her stuff and crawled over her leg to get something. That's a really BIG deal because she usually isn't real comfortable with strangers. Way to go, little sis! Also, she waved and said, "hi", to the speech therapist....who said it counts as her first word because she said it without prompting and even combined it with a gesture as a way of communicating! Then, the next morning she woke mom up by touching her mouth and saying "bouf" twice. Mom's been working on teaching her feature on the face. She also got a new tooth! Nixi's a rock star!
Today we went to my friend's 3rd birthday party, and it was sooooo fun! I dressed in my snazzy fancy dress... I learned that other people's cats don't necessarily enjoy the kind of love that mine does...ended up with a claw puncture over my eye and a bloody lip! I recovered really well and went on to enjoy the party for over an hour! Nixi got to see another baby close up and personal...my friend's sister just turned one. They just kinda looked at each other....what dorks! I got a really cool goody bag, my first ever, and I even had a bite of pizza. What a cool day! I was so excited afterwards that I didn't even take a nap. I love parties and I love my friend!
Our cousin, Carson, turned 1 this week....we heard he had an awesome party and ate LOTS of cake. Wish we could have been there!
Our Grandma MaryJane's birthday is tomorrow, and we wish her the bestest birthday EVER! Wish we could help you blow out the candles!
So, that's our week in a nutshell..........whatever that means! Hope you're was just as fun. Catch ya next week!
xoxo Saf
Here's me and Nixi playing with one of our bouncers...
Here's me, singing Old McDonald...a capella.....
And here's me and Nixi mobbing mom when we realized she had the camera...
We're ALL sick!!! First, it was Saf with a cough and runny nose....then mom....then me...then dad. We are the house of boogies and cooties! We're all feeling a little bit better today, but it was a rough week.
Our Nana came up for a visit before I got sick so she didn't have to experience the wrath of a sick baby. LUCKY HER! We had fun, we didn't get to go to Joey's Jumping Castle because Saf had a runny nose. That was a bummer, but we did try to go to the park. That didn't go over so well. Saf was having a rough day and she had trouble pushing me in my stroller and just couldn't handle it...so we went back home and hung out. Its hard becuase its been raining so much up here that we all have what mom calls "cabin fever", which makes no sense to me as we live in a house. Whatever. Anyhow, it was a fun visit and I really like the bags my Nana carries her stuff in...crinkly and cool.
Mom cancelled all of our services for the week so we wouldn't get any other kids in the program sick, and to give us all a break. So, not much to report on that end.
We have our intake interview for the STAR Center, via phone, this Wednesday. They said to plan on it taking 2 hours..one hour dedicated to each of us! I've only been alive, like, 10 months....I don't know if there's enough of me to take up an hour! It'll be cool becuase mom will get a better sense of what program is the best fit for us and we're hoping to reserve our spaces, too!
I realized that I can clap my hands this week and also fully mastered this cruising thing. I've been tentatively cruising for the past couple of weeks...but this week, smooth as butter, baby! I have also started trying to say "hi" when I wave. I have pretty good inflection, and about every other time I can actually make the real "hi" come out...even if it sounds a little drawn out and goofy. Heck, I'm saying "hi" and waving to the dog, Saf, myself, mom, dad, and even to Mickie Rourke last night when mom was watching the Wrestler and I wouldn't go to sleep! Hey, even creepy dudes can use a little of the old Nixi charm! I'm quite the greeter! Mom shot some video of me when I was first getting the hang of doing it all together...check it out at the bottom of the post! I'm so much better now, but we all have to start somewhere.
In sad news, one of our doggies had to go to dog heaven. Starla was having neurological problems so mom had to help her get some peace. We miss her, but we're happy she had a great life with us and we know we'll see her again someday. She liked to lick my feet...........and I didn't mind.
More to report next week, as we're doing all of our programming this week and such.
Hoping you all had a super lovely Valentine's Day today! We had a great one! We got some neat lovies and books and other cool stuff. Thank you to all our family who sent cards and goodies. We really appreciate all of the love...and the gifts and $$$ don't hurt, either! Just kidding...ok, maybe I'm kidding...I don't know about that Nixi.
Anyhow, we had a super eventful and great week. I had my psych evaluation for Regional Center with a really nice lady. She had tons of stuff for me to play with while she asked mom a bunch of questions. It was 2 hours long, but I hung in there. Mom met with the director of my ABA progam to discuss things. The meeting went great and we got everything we asked for. I won't have to do ABA everyday, but I'll still get to see my BIA one day a week and her direct supervisor on another day of the week. I'm really glad because I didn't want to stop everything with them, I just didn't want to be so overwhelmed 5 days a week. We didn't think they'd be ok with cutting back so much, but we went for broke and it worked out in our favor! I'm just so excited to start my new program. Now, I'll have just one type of therapy session a day, 4 days a week, with Friday's off for park time! SCORE!
We went to look at some motorhomes this weekend. It was super fun. I loved them all. Mom and dad even got an opportunity to do a little psychoeducation about autism with the dealer...'cuz I had a little bit of a meltdown at one point. For all kids, but especially kids with autism, transitioning from one activity to the next is difficult. I was really enjoying each RV and it was hard to move on so quickly. There was so much to see, and touch, and figure out. It was still super fun and I didn't even take a nap on the ride home. Mom stopped for gas and bought what she called "road food". I had something called Cheetos and Rice Crispy Treats for the first time. WOW! I was on a junk food high the likes of which I never even knew existed! If this is what being on the road is like...let's hit it! I was born for the road! Incidentally, Nixi cried, like, the whole time. It was SOOOO embarassing. She pulled it together in the end, though, and we had fun.
Nixi had a big week. She started waving, playing peek-a-boo with a piece of cloth, and banging toys together! I have a distinct feeling that things are about to get a lot louder in our house! I have to tell you, I might say she's a pain in the butt sometimes...but, I really think my sister is cool. Lately I've been immitating her when she makes noises and she thinks its hysterical. I even do it when we're in other rooms...we both giggle while we're waiting for the other one to respond. It's pretty great being a big sister.
Now, just a moment to touch on a docudrama movie playing on HBO, "Temple Grandin." It's a slightly theatrically embellished biopic about one of the most well-known people on the autistic spectrum, Temple Grandin. If you've seen it or plan to, there are a few things to keep in mind. First, autism is a broad name for a number of pervasive developmental disorders that are in the catagory of Autistic Spectrum Disorders. To say one has autism is no more discriptive than it is to say one has cancer(What kind..bone cancer, lung cancer, breast, etc?). All disorders on the Autistic Spectrum have one thing in common,impairment in a person's ability to communicate with others and to read cues from the environment. Apart from that, they are vastly different in symptoms, appearance, and severity. Mom will elaborate on this in her April Autism Awareness email. Temple Grandin didn't speak until she was 4 years old and she now has a doctorate, lives by herself, and is a professor/author/etc. Temple had what was called "selective mutism." Once she began to speak at 4, she spoke clearly and in full sentences as is typical in selective mutism. It's pretty common among people with classic autism. I have classic autism but I have never had selective mutism. I babbled when I was a baby, moved on to "jargon" and got stuck because of my verbal apraxia. I said my first word after I was 2 yrs because the muscles in my mouth don't recieve the instructions from my brain very well. That's why I continue to struggle with speech that people can understand. Also, Temple has terrific spontaneous speech, while she may say things without much of a censor, its her own spontaneous words. A lot of what I say is things I've heard other people say. Some of this is a syptom of my autism called echolalia. Echolalia isn't spontaneous and it doesn't help me to communicate anything outright. It's just what it sounds like, I echo, or repeat verbatum the what someone says. However, it does help me to communicate that I'm anxious, as I tend to do it more intensly when I'm nervous. Most of the rest of the time, I sort of borrow phrases I've heard and use them spontaneously. I do this mainly because of my apraxia...its a model I can practice over and over again and I know my chances of being understood are pretty good, just as long as I can emulate the phrase well enough. For example, on the Wonderpets cartoon they say, "What's gonna work? Teamwork.", when they need to work together to get something done. Sometimes if I want to do something like swing, I say "swing" to mom or dad. If I think they didn't hear me, I'll say "swing" and take them to the patio door. I then look at the swing and say, "what's gonna work? teamwork" to get them to understand that I need their help to open the patio door. Pretty darn clever, eh? A similarity between Temple and me is that she needs deep pressure stimulation to calm herself. She built a squeeze machine that does for her what mom and dad doing a tight squeeze on me does for me. Pretty cool. So, if you get a chance to see the movie...enjoy. Also, be aware that it's one person's story of living on the spectrum with the added flair of movie embellishments!
So, have a great week! I'm getting a visit from my grandma and mom's gonna take me to an indoor bounce house place for an Early Intervention family day. Fingers crossed that it goes well and I have fun. Could be a neat new place for me to go to every so often to blow off some steam!
xoxo Saf
Ok, so part of being a good big sister is sharing...
Part of the reality of being a big sister...sharing can, and does, get old!
So, we had a pretty good week. Lot's and lot's of rain, but we still managed to get in a park day mid-week. Mom and dad have decided they we're gonna stop the ABA services because I seem to do better when I don't have it. Mom will meet with the program director on Tuesday to talk about this and to ask if we can keep our supervisor, Jessica, as a consultant. Probably not, but it never hurts to ask. The other people in my Early Intervention team seem to think that the 2 hours/5 days a week taxes my already limited "I'm ok" stash. Boy, does it ever. I've been at this for over 10 months and its all kind of coming to a head. I try every way possible to tell mom and my BIA that its just not working for me. I try ignoring the BIA, humoring her, hiding in the bedroom, and when all else fails I have a full scale meltdown and bang my head, etc. Really, how many other way can I say this is too much for me right now? Luckily, mom and dad are finally listening.
So, I'll still have my speech and occupational therapy. The speech and OT have offered up their assistant to come Mon-Fri if mom wants, just to give her another set of hands and a new friendly face for me. We'll see. I think we'll probably just do it like we did when we were on break. Mom will add a couple extra phonics and vocabulary lessons into the day (yeah, mom's my preschool teacher!), and that should be good.
On Tues I have my psychological evaluation for the state. See, when I turn 3, I'll still be a Regional Center client but the vendor for my services will be the school district instead of Head Start Early Intervention. The school district needs this evaluation to help create my Individualized Education Plan (IEP) next month. Hopefully I'll be in a good mood and we don't have to wait long in the lobby. The lobby tends to be what kills me. So many sounds, people walking in and out, air gushing in from the automated doors, bright fluorescent lighting, sometime music or a TV. WOW. That can be pretty overloading to the senses. Usually, it looks like I'm having super fun..'cause I am...until I'm not anymore. Ever been on a roller coaster and loved it, until you didn't.......or eaten that last few bites of food because it was so yummy, then feel like you're gonna throw up? That's kinda what its like. I do my best to hold it together, but when I'm in overload something as small as someone saying "hi" to me can send me over the edge. I don't know that its the "hi" that does it as much as what the "hi" means. It seems so innocent, "hi". You know what "hi" really means? It means, "hi, look at me, make eye contact with me and hold it while I smile at you and say something you'll likely not be able to answer which will make me ask you anther question followed by an awkward pause and some facial expression you really wont be able to read correctly so you'll probably take it the wrong way and feel sad/mad/embarrassed/anxious/confused...and heck, maybe I'll laugh and lat you on your head or touch your back" No biggie, no pressure. NOT! I don't think people realize the amount of information communicated by "just saying hi", nor do they realize just how much they are expecting back. Crazy.
That's one of the bummers about autism. People with autism have a hard time "reading" faces and environmental cues. Its easier with the people I see all the time, like mom and dad. See, I've had time to study them. Most of the time I can get their meaning because I know them so well and I have their "formula" down pat. Strangers are a whole other ball game. So, hoping Tues goes well and we can get in and out of there fast!
Nixi's still crawling all over the place. Thank goodness for cold weather and hard wood floors! Since she has to wear warm, fuzzy pants she has no traction on the floors. If I really want her to leave me alone I can move onto the smooth floor and she's stranded on the rugs. I'm guessing this strategy wont work for long so I'm gonna enjoy my ability to adios while I can! She did a really good job with her developmentalist on Friday. Seems like she may be getting another tooth, though. She's been a crab for a few days now. Wow, can she scream loud!
So, exciting week ahead with some changes to come. Hope your week was great and we'll catch up with you again next Sunday!
