Frosting cookies, and sharing the love.............

Let me begin by saying, I LOVE CHRISTMAS!!!!!!!!!! Seriously, its just so magical and fun. All of the songs are bouncy, the lights are bright, and the Christmas specials are the best! We're gonna keep celebrating until the New Year. When I go back to school we'll do our "all done" Christmas classroom clean-up. After that, we'll de-Christmas the house. Makes it a ton easier to say see you later to things Nixi and I REALLY love.

So, the week went pretty well. It started off a bit shaky. I've been having a hard time with poop for the past 3 months. I keep holding it in. I go for about 2 weeks before all of the stuff mom and dad give me make it impossible to hold. In the process of this whole deal, my bottom gets sores from little poops escaping here and there. Not the funnest topic to blog about, but necessary. I've been referred to a special pediatric GI doctor for encopresis. The worst problem with holding it is that the colon gets stretched out and enlarged(megacolon) and the nerves in it get dulled, eventually making it hard to know when you have to poop and making you have accidents. I'm already having that problem, so mom and dad are pretty sure I'll need to retrain my bowels. Only problem is IT HURTS, and you aren't gonna be able to convince me a little pain now will save major pain later. Anyways, at the beginning of the week I was having a real hard time holding in my poop so I wasn't all that fun to be around.

Nix and I have both done relatively well with the schedule changes, since we have no services over winter break. We got to see Heather on Wednesday, and that was cool. We also got to meet up with one of my friends from school at the park. His name is Kameron...and when I say his name I always put my head down, eyes up...and swoon. He's dreamy. It was really fun. Hopefully this week more of my buddies from school can make it out. Nixi has had some meltdowns and seems to be having a rough time with being flexible. She has started doing this thing when she really upset, mom calls it the koala. She holds onto mom so tight with her legs that mom doesn't have to support her, she has a death grip. She's also been screaming and crying a lot lately. So much so, that I've started to get really bothered by it. Its really loud and I'm never sure why she's upset, so I ask mom over and over again to make it stop. Mom just tells me Nixi is sad and that she'll be ok. Its rough on everyone, especially poor Nix. Mom says it'll be ok, so it has to be.

We did some crafts, like making playdough and making a Christmas present for dad. We even made a castle out of a HUGE box. It was really cool and we got to decorate it with crayons. Really fun! Super amazingly cool news...on Christmas day I undressed and dressed myself by myself! There was a lot of struggling and a lot of screaming, but I DID IT! Woohoooo!!

This week I have an appointment with a nutritionist at Regional Center. We'll see how that goes. We have Heather on Wednesday, and hopefully some great park days.

We want to say a BIG thank you to everyone for thinking of us this holiday season! We love all the presents...but we love that you love us even more! So, thank you Nana Cummings..Uncle Randy & Aunt Kathy..Grandpa, Weishi & Cate..Uncle Seth, Aunt Cory & Carson..Aunt Becky & Uncle Curt..Grandpa & Grandma Seifert..Aunt Ginny..Great Grandma & Grandpa Cummings. We love you all!!!

So, hoping you all had a wonderful holiday and who knows what the New Year will bring. Magic, I think!

xoxo
Saf

Here's video of some of our favorite gifts......

Thank you, Uncle Randy and Aunt Kathy!


Thank you, Santa!


Thank you, Uncle Seth, Aunt Cory & Cousin Carson!

A Merry Ho, Ho, Ho to you all!

My school Christmas party was AWESOME! It was super special because mom, dad, and Nixi got to go! I was all ready for it, because mom had added them all to the visual schedule. No surprises, I knew everyone was going to school with me. Here's what our visual schedule looks like...this was our schedule this evening;

So, instead of being confused about the day...I was EXCITED! The whole way to school I was happy as can be. I walked in, or ran in, all on my own. I made sure that dad got to see all of the neat stuff we have in class, 'cuz he doesn't get to go to school very often. We did story time, playdough, and then HE came.....SANTA!!! He knew all of our names, even Nixi, and he gave us each a present. I have to say, from a distance, Santa rules. Up close and personal, a little overwhelming. So, how'd mom managed to sneak in that picture of me with Santa? He quietly knelt down behind me and posed without me knowing! Clever. We sang songs and made gingerbread houses. Nixi mostly ate the frosting and I snacked on the decorations, but it was FUN! All in all, what a GREAT day. It was just the best day ever. Make sure to check out the videos.

I also got to give mom and dad the gift I made for them in school;

It was a big surprise, and they LOVED it!


I'm on break from school for the next 3 weeks. Mom made a contact list for all of the parents so us kids can all get together and try to keep some sort of schedule. That's gonna be rough for all of us. Everyone in class is used to doing things a certain way, and a 3 week break is fun, but also disorienting. An added bummer, its raining and should continue to rain throughout the week. Mom's gonna try to figure out something for us all to do...? We'll see.

Nixi got to hang out with her Early Intervention (EI) case manager on Tuesday. She had a great time showing her different things in our house. She's gotten really good at interacting with adults and had a fun time. The EI staff has winter break starting this week...so Nixi is on break, too.

Unfortunately, Nixi is sick again!! Poor kid can't catch a break. She's in good spirits, though, so that's good.

So, not sure how this week will go...but I think mom has some fun crafts planned. Can't wait to see how the week pans out.

Wishing you all a very Merry Christmas! Hoping Santa is good to you and can't wait to fill you in on all the weeks happenings in our next post!

xoxo
Saf

Santa!!!!!!!!!!!


Feliz Navidad!


"Building" gingerbread houses.......

Let Christmakkah begin!

So, for the past few weeks we've all been sick in one way or another. We're all coming out of it now, thank goodness! Despite it all, we've had a couple of great weeks.

We started our Christmas right after Thanksgiving. Last weekend we got two kitchen sets! One Saf's size and one my size! They're so cool. We've been cooking up lots of great stuff and feeding it to anyone, or anything that'll let us!

We've also been doing movies on our projection big screen every night. Saf likes Madagascar a lot. I like Little Mermaid. Its like going to the theater every night! So cool.

Saf's been doing amazing with school. Every school day she's excited and ready to go. She walks in on her own two feet and starts the day with all the other kids, playing with playdough. That's a good thing, 'cuz mom and I have stuff to do!

A week ago last Friday my early intervention teacher came and met with mom and dad. She asked them a bunch of questions (the MCHAT...toddler autism checklist), and based on the results it looks like I should be eligable for autism services. Now, it was not a diagnostic test. The purpose of the MCHAT is to identify kiddos who are at risk for an autism diagnosis. It has a bunch of critical questions that touch on different areas of autism criteria. I failed in all areas. Kind of a bummer, but also a great way to identify specific areas where I could use a little help. So, mom and dad will try to get Regional Center to give me time with Saf's BIA consultant Heather. That's really exciting because I like her A LOT! She's really fun. Usually, I would get services through Bright Future. That's who did Saf's ABA services in the beginning. You remember how that ended? The people who actually worked with Saf were awesome, but the program directors tried to bully mom and dad into upping Saf's hours to 30 a week. If you recall, she wasn't tolerating 10 a week, so that was just crazy. Either way, mom and dad want me to do services with Heather on a consulting basis. They aren't interesting in putting me through the drama of an intensive program, as I'm generally less comfortable with extended interactions than Saf was. If Saf couldn't tolerate an intesive program, I'd probably just crumble. So, I'll hopefully get to see Heather once a week just like Saf. Fingers crossed it won't be too big of a pain to get what I need. You'd think it's be a no-brainer...I've qualified for up to 30 hr a week and mom and dad are asking for an hour and 20 min. You do the math...its a great deal for Regional Center. We'll see.

This week Saf's class has their Christmas party and mom, dad, and I get to go. We're gonna get to do lots of cool holiday stuff and I think Santa's even coming! No way! How awesome is that?????? Saf's been learning some Christmas songs, and she's just lovin' the whole Christmas theme. We're gonna have a great time! Mom will take lots of video! After that, Saf is on break for 3 weeks. I'm sure that'll be a bummer for her...but I'm pretty excited to get to hang with her!

We want to wish our Aunt Cory a belated happy birthday. Her birthday was last week and we heard it was GREAT! We're so glad you had a wonderful day and we love you very much. We want to wish our Nana Cummings a very happy birthday on the 13th. She deserves a great day and a great year...so we're sending major b-day mojo and love her way!

Know Grandpa & Grandma Seifert, and Uncle Randy & Aunt Kathy are weathering quite a snow storm in Minnesota. Stay safe and warm guys...we love you! Everyone else wherever you are...cuddle up and have a great week. Remember to check back in next week to see video from Saf's school Christmas party!!!!

Peace
Nixi

On our first day of Christmas............


Saf warming up for the x-mas party....and watching herself in the viewfinder...


If you listen carefully, you can hear me singing along in the background...

Rain check...........

Mom is SUPER sick and we have to take really good care of her to so no time to blog tonight! Check back Monday December 13th to hear all about our happenings, as well as to get all the details on Saf's upcoming school Christmas party....complete with SANTA!!!!!!!!!

xoxo & Peace
The girls

See spot run. Run spot Run....PLEASE?!

Seriously?!?!? I can't catch a break! Now I'm covered in spots?!?!? They don't itch, so mom and dad think its probably Roseola again. Its rare for kids to get it more than once, but its not impossible and its actually more common in kids with eczema...like me. I don't have a fever, and other than the spots I'm feeling groovy so no doctor unless something changes. I look pretty scary, the pictures don't show the half of it!

Turkey Day......interesting. Nana Cummings was here, dad was off work, and we were still a little confused about the no school thing. Dinner was a little crazy...it all kinda hit us at once and Saf and I crumbled. Alot of crying, some screaming, not much eating. But it sure smelled good! :)

Saf went to the doctor on Monday and did a TERRIFIC job! She stood on the scale, got her whole exam without mom holding her...good stuff. The doc said she probably had some virus, but all in all looked pretty good. He checked me over just for the heck of it and I was looking pretty good.....was, being the operative term.

We had a lot of great park days. When Nana was here we watched movies on our projector and did some good haning out! I gave Nana two high-fives and Saf gave her a kiss and a hug. All in all, a great visit.

This week Saf is back in school and I finally get to go and see that really neat OT. Should be a good week......now if I could just get rid of my spots!

Peace
Nixi

Gobble, Gobble, Gobble...........

Ok, so we're still dragging. Poor Nixi came down with a fever of 103 on Thursday night, and her fever stayed between 103 and 101 for 2 days. She's feeling a little better today, but not much. I'm holding strong.......but mom's thinking of taking me to the doc because I've still got a congested chest and its been two weeks.
When I get sick he only way mom and dad know is if I have a fever. Otherwise, I'm active as ever and my mood is about the same as usual. 2 weeks for a cough is a bit much, though...we'll see.

We had a great week last week!

I put my own socks on by myself, thank you very much! That's hard! I also walked into class all three days and mom and Nixi were able to leave on the spot! The only drag, now that I'm back in the swing of things with school....this whole week is off for Thanksgiving!!! That's always how it works, just when I get the hang of something or get into something, the game changes! Luckily, mom has started a visual schedule for us in preparation for situations like this, to teach us the days of the week, and to help us see what the day has in store for us. It seemed to help me with going to school, so hopefully it'll help this week with understanding that I don't have school. Its cool, its a laminated week long calendar with several squares under each day. Mom writes in all the steps we take throughout the day with a dry erase marker. Stuff like "brush teeth and comb hair" followed by "shoes" and "school"....or park, or whatever. Its cool because at any point in the day we can check the schedule to see what's coming next...and giggle at mom's stick figure drawings! Nixi likes it a lot, too. Her favorite is at nap and bedtime, mom tells us to the check the schedule and she's loves when it gets to the picture of the bed. She yells "nigh nigh!!!!" and thinks she super cool. Its kinda cute.

We had a really fun time up at Nixi's therapy appointment. She'll finally get to see the really neat OT December 1st. She hasn't seen her since the day she came to evaluate her. Its hard because our schedule is pretty full, and the OT is only down here part time. In any case, looking forward to the kid sister getting seen and coming home with lots of cool things we both can do!

Friday we got to see my BIA, Heather, and we had lots of fun. Nixi thought she was magic...'cuz she was making this little ribber frog do amazing things. I thought it was pretty cool, too.

We also got some new winter hats.....as you can see, I LOVE my panda hat and mittens. So much so, that I wore them for three hours straight and even went to bed with them on!

So, Happy Thanksgiving to you all........check back in next week to hear how I did with the major adjustment in my schedule (darn holidays) and too see some cool holiday pictures and video!

xoxo
Saf

Never too sick to mess with the kitten.......

Draggin' butt.............

So, this week will be brief and to the point! Highlights only 'cuz I'm TIRED! We were sick at the beginning of the week, so canceled some appointments and just tried to get better.

Dad survived 4 days full time with us (he had a few extra days off), and we had a blast! He's so funny and works so hard to make us happy! We love you, daddy!

Saf found her first ladybug...crawled right on her hand! It was yellow and when mom asked her to bring it over for us to see, she did! It didn't even fly away! My big sister is the critter whisperer, I tell you.

I've started sitting in a big person chair at the table and working on eating with a spoon. Turns out I LOVE creamy chicken and wild rice soup. It tastes great and sticks to a spoon like nobody's business!

We had a park playdate with our friends Flyn, Arlo, and Greer and it was super fun!

So there you go...about as nutshell as you can get! Check back in next week for a more in-depth report from Saf!

Peace
Nixi

Progress............and road blocks.

Pretty cool week. We played outside every evening waiting for dad to get home and we met a really neat girl, Addison, from 2 houses down. She's 4, and she really likes Winston. When we first met her I was pretty nervous. Lately I've been having a really hard time being around kids I don't know. When we go to the park, or like when we met Addison, if a kid approaches me I scream and run to mom asking for a hug. This is the second time for me, going through a stage where kids freak me out. I'm still comfortable with my classmates, so that's good. I'm sure it will pass...it did last time. Still, it's not very fun for anyone. But once I saw Addison playing with Winston, I started to get comfortable and saw that she was pretty fun. I'm looking forward to hanging out with her again real soon.

So, I got my very first school progress report. I had 5 goals....
#1 Pragmatics/Joint Attention: "Saf exceeded our expectations for this benchmark."
#2 Transition to new school: "Saf has more than exceeded this benchmark. She participates in all class activities, and she is an excellent role model for her peers."
#3 Articulation: "Saf is using targeted sounds in 3/4 opportunities...benchmark met."
#4 New motor actions: "Saf has already met this goal. She is still hesitant with changes in surfaces and stairs, but is no longer crawling to navigate these."
#5 Emotional Self-regulation: "Saf has made great gains in this area. We are so proud of you Saf."

So, I still have some fine tuning, but not bad for a first report! Mom and dad were so proud that I'm a role model to my peers. Pretty neat stuff!

As far as my OT and speech evaluations at the rehab center....not so good. They told mom that they didn't have the "equipment, knowledge, or skill base" to work with me. They said, "We're sorry, but we can't help you." They were really nice, and honest. They said that my sensory integration issues needed more than they could offer. They referred us to an OT in Fresno that works on sensory integration. Mom's heard of him before, but because he's in Fresno we tried to go local first. Also, remember the jerk that made mom cry at Regional Center....he told us to go to the rehab center. Anyways, it was a HUGE let down and just another situation in which a person sees that I need the help but has no idea how to provide it. Like I said, though, they were really nice and really sensitive to my needs and we appreciated their candor and heart felt apologies. Mom will contact the guy in Fresno. The chances of me tolerating an hour drive to Fresno and still being "available" when we get to the session is slim to none. The OT that's working with Nixi works for him...so maybe she could even work with me. Insurance won't cover sensory integration for sure. That's a guarantee. Mom's gonna try to compel Regional Center to help, as the place they referred us to said they can't help us. We'll see. Sort of a snowball's chance in you know where. Parting words from the rehab center, "Just because we can't help you doesn't mean you don't need to get help somewhere where they can. You've got a small window here for a number of life skills, and its closing fast." Yeah.............we know. To be continued......

Mom made the kitchen bar into a HUGE felt board for us and we've been having tons of fun with it. We're using to learn about holidays, emotions, social interaction, colors, shapes, etc. If there's something we need to work on, all mom has to do is figure out a way to cut it out in felt and we're off! It's a fun way for us to learn and just enjoy lots of fun with mom and dad. We like it a lot.

Oh, and THANK YOU everyone for the Halloween cards...and $! Mom used our Halloween money to buy the stuff to make the felt board!

With that, I'm signing off. Hope you all are doing great and check back in next week for Nixi's post!

xoxo
Saf

Happy HALLOWEEN!!!!!

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!

xoxo
Saf

Higher high's....Lower low's...........

Interesting week.

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!

Peace
Nixi

High's.....and low's..............

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!.............

Say Cheeeeese!!!!!!!!

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.......

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!

xoxo
Saf

Imagination (and some cool props) makes a dream a reality...

Dress up RULES.............


What a looooooooooooong week! We had a lot of fun, but it just seemed to drag on and on.

Monday I had an appointment with my early interventionist up at the therapy center. Saf and I had a great time.

Tuesday Saf had school....enter, speed bump. Ok, so last week was the fair. It was great and exciting...also overwhelming and a bit confusing. So, this week Saf struggled with going to school. Once she was in class and into the routine, she did great. She just had a hard time getting through those doors. Lots of crying, screaming, some kicking...it was rough. Mom, me, and Teacher Jenn just helped her through it...and she went all three days. Hoping she doesn't have as hard of a time this week. Either way, we'll just work through it and move on.

Really exciting...Saf got her artwork back from the fair and her and her whole class got 1st Prize blue ribbons! So neat!

We went to the doctor on Friday because we just can't seem to shake the runny noses. Saf did AMAZING...even better than last time. She didn't even sit on mom's lap, and let the doctor check her ears, lungs, etc. I did super great, clapping for myself after every portion of the exam! Turns out we both just have really bad allergies. Living in this dusty valley surely isn't helping much. So, runny noses it is...at least until wetter weather.

We want to wish our Cousin Matt Marapese a wonderful life with his new beautiful bride. Mom is so very happy for you and we just think it's the coolest, too!

Had some great park days, and some not so great ones. It was a mixed bag this week. Can't wait to see what next week brings!

Peace
Nixi

The fair RULES! Wow, what a week! Let's get right into it!

We started the week with Nixi getting to go to the therapy center where we used to do speech/OT. We had super fun and Nixi did a great job of asking her Early Interventionist for help! It's what mom calls a "door open" kinda day. Nixi was feeling good and acting very comfortable for most of the day..open to trying new things and exploring. It was great! We still both have runny noses, but other than that we seem to be getting better.

I got to go to school on Tuesday...still LOVE it! I got to finger paint a pig, 'cuz this month we're learning all about farms. On Wednesday I didn't have school, but that was ok 'cuz we our Nana came to visit. We went to the pet store and looked at all the animals, topping the day off with some park time. It was awesome!

Thursday....the big day...FAIR DAY! Ok, so I'll give you a blow by blow. We got to school, and it was so cool because everyone's parents were there and stuff. Kind of confusing....teacher Jenn said we had to leave to get on the bus. I thought we had to go home and got really upset. Teacher Jenn carried me out to the bus and tried to help me understand what we were doing. I wasn't buying it....until we got on the bus! WOW! Buses are SO COOL! They made everyone do an evacuation drill...so after getting on, we had to get back off?!?! The bus driver let me stay on...'cuz I think he knew I probably wouldn't have made it back on. Off we went! We sang "the wheels on the bus" and just had super fun. Mom, Nana, and Nixi followed in their car. We all got to tour the fair and see all of the animals. Mom and Nana hung back with Nixi and I got to walk with teacher Jenn and Teacher Allison. We saw cows, sheep being sheered, pigs, chickens...you name it, we saw it. We also toured the art pavilion....and low and behold, teacher Jenn had submitted our art and it was there hanging for everyone to see! Mine looked great and mom was SO PROUD! What a neat surprise. An even neater surprise, dad got out of jury duty and surprised us all by finding us at the fair and finishing the morning off with us. It was just the greatest day ever! I loved it!

We had a great visit with Nana. I read a book with her and Nixi looked at her a lot. It was fun...I even gave a her a hug and a kiss when she had to leave!

It was just a great week. We had so many huge events and we handled them all pretty darn well. Don't suppose this week will be nearly as exciting....but you never can tell in this house!

xoxo
Saf

Getting on the bus was rough, and confusing.......


Nixi got right into the spirit and became a member of the "choir"...