All you need is love........

Hey all, we had an uber busy week. Had lots of people in and out of the house....kinda strange...kind ok.

On Tuesday some people from the school district came to the house to meet me. There were 3 of them, but only one had an iPhone with cool app's...so you can guess who became a quick a friend. She's the OT for the schools, and she was nice...her phone was nicer. While I played with her....by her, I really mean that cool phone....the two other ladies asked mom a bunch of questions about me. For a second I thought, "finally, my own E! True Hollywood Story!!!", until I remembered that I live in podunk Tulare. A girl can dream. Anyways, it was ok. I have a tendency to get a little nervous around a lot of people and Tuesday was no exception, but I handled it extremely well.

Because the school district people thought I was so cool and special, they hammered out all of my new therapy details with mom right then and there. That was really good because I now mom was really prepared to battle in the IEP. So, they are gonna give me 40 minute speech and OT sessions, twice a week...ideticle to what I'm getting now. But the HUGE victory is that mom got them to stipulate that my sessions would be provided only by licensed speech and OT professionals, rather than assistants or aides. Now, the school district only has 1 speech pathologist and 1 OT for 5 special needs pre-k classrooms. See why its such a big deal! Yey for me!

Mom also toured the preschool class I'll build up to attending and she said it was awesome. The class I'll be in has a maximum of 9 kids, with 1 teacher and 2 teacher's aides. Kids in the class have a range of disabilities, like cochlear implants, deafness, speech apraxia, down syndrome, and autism. In this particular class, my future class, there's 2 twins with cochlear implants and one of everything else. Sounds like a good mix to me. I'm not quite ready to jump right in, so I'll start gradually building up to it bits and pieces at a time. Either way, I'm super excited to start this new 3 year old chapter of my life. I'm so over being a toddler!

Thursday night was a strange one. From time to time, I have these sort of "spells" where I get disoriented, out of sorts, and spacey. That's why I had the EEG last year. -- Autism Factoid: A little over 50% of people with autism develop seizure disorders by the time they're teenagers.-- I have what's called a seizure profile, meaning that the neurologist believes that I likely have petit mal seizures. So, when I have these spacey episodes I usually come out of it feeling pretty cruddy. Indeed, since then I have been really up and down. I can go from laughing to crying in a second and I have a hard time deciding what I want to do, where I want to be, etc. Its been a rough few days. I'm also about due for a down swing. See, people with autism do something called cycling. For me, I cycle about every 3-4 months. Usually that means I have a week or two that are really rough for me. Everything just seems harder and confusing, and I'm sad most of the time. So, not sure if its the "spell" or cycling, but whatever the reason...I'm struggling. At least I know its probably only temporary.

Friday mom met with Regional Center and the ABA guy to talk about services after my birthday. Now, remember, this is the guy mom had the great meeting with about altering my services to better meet my needs like a month or so ago. Well, he came in here and said that if I don't go up to a 30 hour week, they wont provide me with anything. That's 6 hrs of ABA a day! Remember, I wasn't tolerating 2 hrs a day before. Is this guy on drugs??? The Regional Center people have strongly encouraged him to continue my services as is until the end of April....after mom tore him a new you know what. They want me to be evaluated by their medical director becuase they are concerned about my seizure profile, apraxia, and motor dyspraxia. They feel like there may be a pressing neurological issue that is even more primary than the autism. Hey, don't matter to me...and mom and dad are always eager to have someone tell them more about me than they already know. I'll also be evlautated by a psychologist for Obsessive Compulsive Disorder and Anxiety disorders. I even get to see a nutrionalist. At the end of the day, they assured mom that the ABA program I've been in isn't the only program they vendor...so there will be no all or nothing ultimatums. All good stuff.

My poor kid sister is SICK SICK SICK! She was looking a little off on Thursday, and by last night she developed a full blown cold. I tell you, between the copious amounts of drool, runny nose, and watering eyes.......that kid is Typhoid Mary! Super gross. Really though, I hope she feels better soon.

Not only do we have Easter to look forward to this week, but its also dad's birthday on Sunday. We want to wish the best daddy ever the best birthday ever. You're our hero. You're one of the good guys. We love you more than you could ever possibly know!

So, hope you all have an amazing Easter filled with so many chocolate bunnies and yummy peeps that you have no option but to hurl! More next week.

xoxo
Saf

Whoever says watching TV is a sedentary activity obviously isn't doing it right!

Kennels aren't just for naughty doggies..........

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!

Born free...as free as the wind blows...as free as the Saf goes.......=)

Super week...full of up's and down's and all around's! First off...I LOVE FISH! While my sister loves to watch them, turns out I LOVE to eat them! I've started eating table foods, in earnest....and I have to say, Swai with white rice and a lemon Bearnaise sauce can't be beat! My other fav...garlic mashed potatoes........YUMMMMMMM!

I had a really great week. I played with Saf's BIA and her supervisor without mom even in the room! That's a HUGE step for me! My world just keeps getting bigger and bigger! I'm starting to practice standing on my own...scary stuff! I can do it for a few seconds before my fear gets the best of me and I grab on to something for dear life! Everyone's gotta start somewhere! I'm also waving and saying "bye", and starting to try to say "dad" with "da". Bummer for mom is that it would appear my goofy motor planning is getting in the way of saying "mama"....but I can say "yaya"! Can't win 'em all.

We went to the pet store almost every day this week. Huge milestone for Saf, mom rigged a safety harness for her and she went free range through the store every time we went! See, Saf has a mind of her own and, like most kids on the autistic spectrum, doesn't always respond to verbal instructions/warnings so she's what mom and dad call a "flight risk". So, when we go to stores mom typically wears me and Saf goes in the shopping cart. We were off to the pet store on Monday when mom decided...no guts, no glory. Saf did great and we had a super fun time. Leaving the store was rough, but Saf powered through it and by the time the weekend came and we took dad she was able to leave the store with no problems at all. Dad was SOOOO proud. We're building up to trying grocery shopping and maybe Target. Once we get some more places down pat, mom will try no safety harness. All really good and exciting stuff. Steps towards making Saf's world a little bigger, too!

Friday was an exciting day. Saf whole treatment team came to the house for a meeting to prepare for her upcoming Individualized Education Plan (IEP) with the school district. I woke up in the middle of the meeting so I got to see everyone. It was cool. Dad came home early so we could drive up to Fresno to pick up our RV. We drove all the way there, in the rain, and came back empty handed! Those goofs didn't call us to tell us that they had to repair something and it wouldn't be ready for us. They're gonna deliver it this week and fill up all the tanks and stuff to make up for making us drive all the way there for nothing. Its ok, though...turns out the thing they're fixing is a really expensive fix so better that they caught it and will have it all taken care of before we get it. Still, bummer to drive all that way for nothing. Hoping we can camp out in it this weekend. Saf seems to really like it, and if its ok for Saf then its ok for me!

This week is a busy one. I have speech, OT, and physical therapy...and Saf has all her stuff Monday-Friday. Her new schedule of one therapy session a day is working out much better. Unfortunately, she had a rough speech and OT session the week before last so this week she didn't want to go into the treatment building. Tomorrow she has speech and OT at the treatment building, and two representatives from the school district are coming to meet her and observe. I'm afraid they'll likely be observing us arriving and leaving. We never even made it out of the car last Thursday, so I'm anticipating much of the same tomorrow...but you never know. If there's one thing I've learned in my 11 months on this planet, its that every day truly is a new day full of possibilities for magic. My sister can make magic happen. I've seen her do it...she'll do it again.

So, sure there will be lots to report next week. Have a great week and a happy St. Patty's Day!

Peace
Nixi

Seriously, fish RULES..........want some? I don't mind sharing...


Saf..the bilingual, speed baller..............

To open a book is to open the door to a new world...

Lot's of excitement this week! We got an early birthday present from our Nana...a really cool book display case. It's so awesome. If we want a book, all we have to do is look at the display and we can grab the one we want super easy. WE LOVE IT! Thank you, Nana! See, both Nixi and I LOVE books. She loves to eat them, I love to look at the pictures and sometimes even make up my own story. I always take a book to bed with me at nap time or bedtime. I just love them so much. Books make me happy.

Anyhow, we also got to go to the pet store 3 times. Mom calls it the "mini zoo". We saw turtles, fish, rats, a chinchilla, frogs, snakes. If there's anything I love as much as books, its animals. When the weather is better we're gonna go to a petting zoo...I'm not sure how I feel about actually touching all those animals...but I'm game to try!

My psych evaluation by the state came back and, big shocker, are you ready....I have autism. Wa Wa Wa Waaaaaaaaaaaaaaaa! No duh, tell me something I didn't already know?! Seriously, you'd think it'd be way more exciting for what they must pay that doctor. I wanted it to say that I'm an alien from another plant here on earth to collect data for the mother planet on how strange, goofy, and just plain simple the human race is. And she thought she was the trained observer? HA! Alas, I digress. The report didn't really have much new to say, but she called me "cute" and "beautiful" and said that I "[have] unusual behaviors". I suppose some of the things I do may seem unusual if you don't know why I'm doing them. Darn apraxia doesn't help me one bit in explaining why it is that I do "unusual" things. More incentive to work my booty off to get more intelligible, I suppose. Gotta say, even though mom and dad took me to a private clinician when I was 22 months for a diagnosis...I think this report still hurt them a bit. I know they try to act like its no big deal, but I swear I saw a little tear in each of their eyes when they read it. I love 'em, hurts to see them hurt. We're all ok, we'll all be ok, and its all good.

On to some fun and exciting news........we are the proud owners of a previously owned 34' home on wheels! Dad closed the deal Saturday. We have a 1993 Bounder 34J series. Can't wait to break it in and make it our own! Dad says we can camp out in it maybe next weekend! I LOVE MOTOR HOMES!!!!! This is just gonna open up a whole new world for us all! YEY!!! ROAD FOOD!!!!!!!!!!!!! My stomach hurts just thinking about it! Look out, spring and summer....here come the Seiferts!

Nixi had a fun week...she's perfected the pincher grasp and somewhat perfected putting EVERYTHING in her mouth. That kid's like a mini hoover! Mom and dad are constantly pulling junk out her mouth...lint, dust bunny, everything is fair game. Its sooooo gross! But its a big deal because now Nixi can start building up to the road food when we RV....alas, I digress, again! She got another tooth, so now she has her 2 front bottom and top. She also is getting her first spiral curls! Looks like she's gonna have curly hair like me! Just wait until mom has to detangle that hair...OUCH! We've been having a lot of fun together this past week. We're interacting with each other even more and I'm working on tolerating her touching me. See, I don't mind touching her at all....in fact, I kinda like it. I'm just uncomfortable with her touching me...but I'm starting to let her crawl over me for something and its not that bad. We do a lot of back and forth vocal games. She's a pretty funny and fun kid. I'm pretty excited for our future together as best buds!

Looks like we dodged a bullet with the Star Center. Mom was having a weird gut feeling after talking to them the second time. She talked to our speech and OT therapists about it and they had some reservations. Turns out, Star Center doesn't generally work with kids that have BOTH sensory processing disorder and autism (they focus more on SPD), and they work in a "result oriented framework". What that means is that, much like ABA, they believe that the end justifies the means. So, they'll come up with goals for me in the 2.5 wks and I WILL achieve them. They are not a process or ideological program. Given what we all know about me....I'm not a circus pony...I don't perform and I don't do tricks. So, the likelihood of us getting down there and dropping $10K for nothing but a battle of the wills is pretty high. Still seems like a great program, just maybe not the best fit for me. While Nixi has solely sensory issues, she's not real big on doing what she's told, either. Us Seifert girls jump for no one! So, the search continues...this time for a program that works with both diagnoses on a regular basis and values them equally.

Wow, we had a really full week. Hope yours was great. Talk at ya next week.

xoxo
Saf

Ok, so this is kinda cute...Nixi likes to twiddle dad's mustache..


Everybody loves a little cowboy dancing..........