Anyone could mistake the dog water for a pool...right?! Don't judge me!

Great weather, great week! We've been playing out on the patio everyday after our appointments and its super fun. Saf ended up not having to go to the doctor, so that started our week off just fine!

I had a really good speech and OT session on both Monday and Thursday. Thursday was the best because that's the day we get to go up to the treatment center. Saf and I had SO MUCH FUN playing in this really cool tunnel. Its sort of like a cat house tunnel thing, but they put this like big sock over the end so you have to crawl through stretchy fabric. We had so much fun following each other into the tunnel. Sometimes, when Saf was through the tunnel and in the sock part, I'd go over and flop on her head. We both thought that was pretty darn entertaining. We just have such a great time there, and we get such great sensory work done all at the same time. As seems to be all things for us treatment wise, we found out that this coming week will probably be the last week we get to go up there. Seems some genius thinks occupational therapy is something that should be done indirectly. Said genius thinks its appropriate and therapeutic for the OT to create a calendar of activities that mom and dad should do with us. That's it. No OT or sensory work in the clinic and no direct treatment in the home. They're not just punishing us, but that's how its gonna be for all kids in early intervention services. Seriously, who the heck makes these decisions?! It sure seems to be getting harder and harder for us to get any real services. Mom will figure something out. We're all pretty sad about it, though.

On a high note, Saf had 2 amazing days at school. Wednesday she had some real quality interaction with the speech therapist, and Friday was just the funnest day yet. Saf played and played with the OT, letting her touch her to help her and everything! I got to play on this really cool spring board jeep....it was just the best. It was super windy, too......we LOVE wind. It was just a great day!

Mom talked to Saf's new BIA(behavioral interventionist). Remember, Saf got dumped by Bright Futures, so this BIA is through a group in another city. She'll come and do consultation services for 2 hrs once a week. She seems pretty nice. She'll come on June 8th to start a 3 part assessment of Saf and then mom and her will come up with a plan. What mom really wants help with is getting Saf more comfortable with a visual schedule (pictures of each activity for the day, laid out on a board...currently makes Saf REALLY anxious), as well as self-care stuff. We'll see....I hope it works out like mom and dad want it to.

We've had just the best weekend ever. We love this weather....dad BBQ'ed each night, and we got to play on the patio until 7:30pm. Doesn't get much better than that! Last night I woke mom up at 3am with, "more french fries"....'cuz I learned even more words this week! I have to say, none are more tasty than "french fry"!

So, that's our week in a nutshell. Hope yours was just as fun!

Peace
Nixi

Saf singing Frank Leto's ladybug song..............

I feel pretty, Oh so pretty..........!

Hey everyone! We had a great week last week!

I went to school Wednesday and Friday and had super fun! I went down a slide on my own, on my butt, for the very first time ever in my life! It was so fun! I also raced my OT down a side by side slide....she's a lot taller than me, or I would have won! My speech therapist made me an underwater picture to take home, it was cool! It was just a great couple of sessions.

We had an IEP for my extended school year services. During summer services my speech and OT will go down to just once a week, and I wont have any speech and OT for the whole month of July! I'm super bummed...not only do I enjoy the services, but I need them. Also, looks like my teacher is gonna be moving to another school. The bummer is that I've been spending all of this time getting used to my school, the good news is that I can go to the other school and follow my teacher if I want. I think I'm gonna. It means getting used to a new school, but my teacher has a son with Classic Autism so she just "gets me". I don't want to lose that, so I'll transition over to the new school in August.

Nixi has been picking up words like crazy. Her new words this week are: donut, diaper, Safi, and door. She now has about 15 words, and she's only 13 months..not too shabby! Lately, though, she's been having a hard time coping with stuff. She gets pretty upset over little things, and has even begun to bang her head. She's done it so hard that she's bruised herself and given herself a knot on her forehead. She also seems to like to lightly do it here and there throughout the day to just kind of see how different stuff feels on her forehead. Mom and dad are gonna take her for cranial sacial massage to see if that helps.

I tell you, sensory issues are rough. People just don't seem to get it. Nobody would like it if they had to sit still and let a bunch of ants crawl all over them, right? Well, for some reason, my sister and I are just about as uncomfortable in a myriad of situations throughout the day. Its just so hard to try to make yourself feel right when the outside world sometimes feels so wrong. We're just kids, how are we supposed to understand all of this. It may seem scary or strange to mom and dad, and everyone else, when we do some of the things we do...but we're just trying whatever we can think of to feel ok and to make sense of everything. Its a lot to deal with. The up shot to being so "sensitive" is that we can see beauty, wonder, interest, and magic in things that most people would just pass by and never notice. What a shame for them.

Luckily, mom and dad are always game for looking at new and unique ways to help us be happy. While I may not tolerate the cranial sacial massage, Nixi may. Its worth giving it a shot.

For mom's birthday on Saturday, we went to the park and I got to feed a goose from my hand! Usually they just hiss at me, but not this time....whammo...right out of my hand! Pretty darn cool. We're also having a blast just hanging out on the patio and playing with all of our outdoor toys. I love summer, so does Nixi. Right now, I gotta say, life is pretty great. It may all change tomorrow, looks like mom's gonna have to take me to the doctor. We'll see...should be HORRIBLE.

Anyways, have a great week!

xoxo
Saf

On the patio today enjoying the water table......


YouTube wasn't cooperating fully tonight, so mom will post video of me singing the Ladybug Song next week..........so, stay tuned!

Wow, what a week! Dad had the week off and we got to spend lot's of time just hanging out and having fun with him. We went to the park, Saf chased the geese and I got to go on some spinning thing with dad. It was so cool!

Saf had a great day at school for speech and OT. She was gonna try and do a part of preschool with the other kids on Wednesday, but she had a rough morning so she didn't make it. It was a bummer, but I got to hang out with her so I'm not complaining!

I had a great speech and OT session. I'm saying all kinds of things, like "turtle", "door", "hug"...and lot's more. It's kind of funny because I start saying some pretty advanced words, and then I just sort of stop. The words are still there, I just don't use them anymore, I move on to new ones. Its been months since I've said "thank you", "this is a", and "hi". So, whenever I say something new mom and dad are always trying to help me "keep" it. We're not really sure why I seem to "lose" some words, but we're working on figuring it out.

So, we went RV'ing for the first time this weekend. Mom and dad chose a campsite in the next town, so we could make a fast getaway if need be. It started out a little rocky, Saf didn't want to get in the RV. Mom took the video camera and quickly shot some video of me in my car seat and Saf's empty car seat, co-pilot, in the RV and showed it to her. She saw it and hopped right in. Dad did an awesome job or driving that monster, it was so fun. He said he was the pilot, Saf was the co-pilot, and I got to be the engineer! We got to our campsite and it was pretty packed. They were having a pediatric cancer fundraiser that weekend. Initially, Saf wasn't too keen on getting out of the RV. Mom took some video of the campsite and the pool we brought to play in and she was all for it! Mom and dad realized, though, that they need to put some autism awareness magnets on the RV....as the transition period was pretty LOUD! Once we settled in we had SO MUCH FUN! Winston relaxed, mom and dad broke out the snack food, and we played in our little pool for over 5 hours! Needless to say, neither of us took naps. So, mom and dad decided the better part of valor was to bail the overnight plan and head home while we were still feeling the RV love. We'll work up to the overnight stuff at our own pace. Didn't make any difference to us, we LOVED IT!

Yesterday mom cleaned the patio and set up our patio pool. We spent all day today hanging out in the pool and playing on the patio....I've never gotten to do that before. It was really fun!

So, we had just a great week. Hope you all had a good one and check back next week to see the haps in the Seifert roost!

Peace
Nixi

The Seifert clan's maiden voyage...


Having super fun at the campsite.........

...this little piggie went whoohaaahaaa all the way back to the scary planet from which she came!

It is SO GOOD to have the blog back under our control! Darn hackers! Won't happen again...we changed our password to something really hard.
Wait.
Be right back.
Sorry, I had to go tell Nixi to stop bugging me about telling you how cool our new password, "monkeyburger" is.
Oh crap.
Did I type that out loud?
My bad.
Back to the drawing board.

Oh well, its good to be back just the same. We had a great week...really busy.

I went to school on Wednesday and Friday and both were really good days. I had a bit of a hard time getting strapped into my car seat on Wed. when we were leaving school. Sometimes, I'm having such a good time and trying so hard to keep it all together that when I'm finally out of the situation...I crumble. Wed. was no exception. It took about 5 minutes to get on the road because I kept pulling the straps off of my arms, kicking the seat, and banging my head against the headrest. There's just so much to see and do at school, and I wanted so badly to have a great day and not let anything bother me. Everything has a way of building and building until I can't hold it in anymore........then BOOM!
Since I've been banging my head a lot more lately, mom decided on Thursday to start teaching me how to do a headstand. See, I feel a lot better when I get my tight squeezes...its like hitting a reset button. Well, banging my head is pretty much the same. So, mom figures if I can learn to do a headstand against the wall, I can hit that reset button all on my own without hurting myself. I thought it was pretty fun. I can do it with mom holding my legs, not so sure about the whole wall thing yet. Mom did it to show me and it freaked me out big time...but it also got me to try it on my own a few times. We'll keep trying, I guess. It's fun, anyways.
Nixi had an awesome week...she learned how to say, and use, the word "more". Can't think of a better word for a 1 year old to know.--Detect sarcasm here.-- Seriously, now she has a word for her demands. Good grief. She's also learned to ask to watch Dora the Explorer on T.V. by saying Dora, to ask to go outside by saying "sowside", and can label socks and shoes. That kid is a smarty! She had a great speech and OT session on Thursday, climbing on to the platform swing all on her own. It was even cooler because I spun her around..and around..and around on it so fast that the OT had to check her eyes at one point to make sure she was ok. It was SO COOL!
On Saturday we went to a birthday party and I got to feed Geese, and Mother's Day was really fun. We had just a great week. Hope you all had a great one, too.

Nixi will be back doing her entry next week, so make sure not to miss it! Also, we'll have some video next week. This week were all just too busy living life to document it! Have a great week!

xoxo
Saf

Happy Mother's Day

Taking a break to enjoy Mother's Day with mom....check back Tuesday to read all about last week!

xoxo
Saf

NO ABA FOR YOU!

The best seat in the house...........


This is our last blog entry before turning things back over to the girls. I cannot tell you how excited they are to get us off of here! They've been whispering back and forth all afternoon, tossing around ideas for a new password that's "hack-proof". They're not about to let us get on here again. It was fun while it lasted!

So, this week was a biggie. We started the week with a visit from Nana Cummings and Omi Paul. It was great! Saf took a little while to warm up but once she did she was all about showing off. She showed them how she throws the ball for her dog, how wonderfully her and her sister can play, and how very much she enjoyed their company. When Nana and Omi left for lunch Saf fell apart. She was so sad that they were leaving. As much as Saf can seem aloof and troubled by other's presence, nothing could be farther from the truth. See, Saf LOVES to be around people. She just doesn't know how to initiate interaction, giving her the appearance of being indifferent. In reality, she is nervous and unsure. Once she finds a "schtick" that gets a good reaction she feels much more relaxed. Nixi wasn't sure what to make of the whole visit, but she sure did like staring at Nana and Omi. What intersting broads! All in all, a great visit!

Saf had a wonderful day at school on Wed...but refused to go on Friday. For some reason she isn't game for putting on shoes...whether its the shoes or the promise that shoes means were're going out, I don't know. She had some banner communication moments this weekend, commenting on things like, "mmmm, banana is good", "donut is good". Seems small, but truly HUGE milestone! We were dropped like a hot potato by the ABA vendor that we had been with for the past year. Seems they wouldn't budge on the 30-hour a week intensive program idea. So, we're off to look for another vendor that will provide what's appropriate...consult services. Theoretically, Regional Center is taking care of that for us. Sadly, in a conversation with them on Tues. it was made clear that they just don't get "us". They are under the impression that we are anti-ABA. Weird, given the amount of fight we've been putting forth to keep our ABA services...just at an appropriate level.
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SCARY ABA SIDENOTE ~ ABA is currently the treatment of choice for Autistic Spectrum Disorders (ASD). Because of this, many counties and Regional Centers across the country as well as most insurance carriers are only offering ABA for ASD kids. The most inclusive review of the current research on ABA effectiveness states that ABA has an efficacy (success) rate of approximately 46%, with the most progress being attained in the first year of treatment. Every year thereafter gains have proven to be minimal. The few long term studies that exist infer that the gains made in childhood don't stay with the kids as they mature into adulthood and live in a setting other than the setting in which ABA was initially practiced. Scarier, the Denver model for Early Intervetion (what they were doing with Saf), has a success rate of 34% based on a study of less than 10 kids. So, seems like a bit of quakery you might say? Sadly, no, tragically...these are the best success rates to date for treatment of ASD's. There are a number of treatments and treatment philosophies out there, just not the money for research to scientifically prove them one way or the other. ABA costs roughly $20,000 - $40,000 a year...per kid. At the end of the day, there's a good amount of money in the ABA community to put back into the pot for things like research studies. Again, those studies have concluded that about 1 in 2 kids above the age of 3 involved in an ABA program will show notable progress....and little over 1/3rd of a child under the age of 3 will benefit from the hot new Denver model. OUCH! That smarts a bit!
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Back to Saf. We're NOT anti-ABA...but we sure as hell aren't gonna put all our eggs in a basket so loosely weaved! Saf is one of the 54% of kids that cannot tolerate an intensive ABA program....and THAT'S OK! Its not her fault, its not our fault, it just IS! So, we'll see if we get the new consult service and will pursue other avenues for different types of treatment in the near future!

Nixi had a patchy week.....full of highs and lows. A big low, getting 2 shots at her doctors appointment. Ginormous high, saying "moh" to request more food and more swinging! What a great kiddo! Truly a fragile soul, our little Nixi. She remains a bit of mystery to us at times. While she can be truly joyful, it just seems so fleeting. We just love her so much and want her to know that we're here for her always. I think she knows this on a cellular level, her anxious little brain just seems to get in the way! Really, a gentle and delicate kid.

Well all, its been super fun but its about time to turn the reigns back over to the girls. Take care and thanx for listening!

Sarah

Nixi's new fav way to swing.......