A rose by any other name..............

*Safi; Arabic/Hindi/Swahili in origin, meaning "lion's share, pure friend"...abbreviation of the word Safia, which holds the same meanings.
*Saf; Bright Futures in origin, meaning...diddly-squat!!
My name is Safia Dot Seifert. For the past 2 years everyone has been calling me "Saf", ever since my Bright Futures BIA nicknamed me that. Now, mom knows I can read and its always confused her that when she asks me about my name written as "Saf" I always say "Safi". FINALLY, mom had a light bulb moment and asked me what was my favorite..."Saf" or "Safi". I told her Safi. Then she asked me if she should say "Saf" or "Safi" when she talks to me...I said, "Safi, please." So there you have it! I prefer to be called Safi, thank you very much! Feels so good to be understood!

That was the cherry on top of a great week! Summer school was awesome! Our friend Kameron's mom ran the activities and we made a jolly roger flag and had a treasure hunt on Wednesday. It was Kameron's birthday and at the end of the treasure hunt there were cupcakes! SOOOOO cool! Both Nix and I did great both days and it was just a ton of fun!

Thursday we were both feeling a little wonky. Heather, our BIA, came over and we were touch and go. We recouped Friday and had a fun time playing on the patio and just hanging out. This weekend was super exciting. We got our own beds!!! Mine is Toy Story themed, and when I saw it I said "I love my bed, mom, thanks for helping me get a Toy Story bed!" Kit and Bodhi were checking out the new diggs and I was cuddling with them, saying "I love cats" and it dawned on me that the cat I wanted to share my new big kid bed with the most wasn't here. So, I asked mom "picture of Oliver?" and she gave me one so I could show him my bed, too. It was cool. Nixi got a Dora bed and she thinks its pretty darn cool! Tonight (Sunday) will be our first nights in them, so hoping it goes well. I already took a nap in mine and it was the best sleep I've ever had! :) Nix isn't sold on the whole idea, but I think she'll get used to it.

All in all, a super GREAT week. Nix still struggles with finding her groove but like she said last week, we're all sort of used to it so its the new norm and we're just moving ahead. This weekend we get to help our friend Gideon celebrate his birthday! Should be a great party, can't wait! It gonna be an awesome week! Check back in next week to see if we pulled off another great week with minimal hitches!

xoxo
SAFI

One fish, two fish.....check out Nixi's super rockin upside down sunglasses!


Swinging and tickling....so fun!

Let the good times roll!

We had a great week! I'm still a little out of sorts, but seeing as though I've been struggling for over 2 months now...we're all just kind of getting used to it as the new norm. Its not great, but what's anyone gonna do? We're just riding the storm...however, that doesn't mean we don't still have lots of fun and do lots of of cool stuff.

Summer school was super fun. We played this really cool game called, "I can do that!". We had to watch and listen while Heather showed us something we had to do (e.g. hold a beanie baby under our chin without any hands), then count to 5 and it was our turn to do it. We were all really good at it, even the waiting part! I liked climbing through tunnels and giving Liz,a big kid helper, a high five at the end. So cool! Saf liked the free play the best...her and Liz played catch with silly hats on their heads. It was really fun. I had a little trouble on Tuesday but pulled it together and Saf did great both days.

We had a super awesome, totally fabulous, funnest day ever playdate with our friends Sebastian, Gideon, and Penelope on Friday. Heather got to go with us, too...icing on the cake! We played with their dogs, their super cool toys, their totally awesome sensory gym...and them, of course. Sebastian was a super cool leader, helping us see all of the stuff they had and taking our hands to show us where to go. It was really fun. Saf has asked to go to their house every day since! Can't wait to do it again!

Mom finally got around to cleaning up the patio and we've been out there since! We play with our pool and sandboxes...the "beach"...Seifert style! We love it out there. So much fun!

All in all, a pretty cool week! Check back in next week to see how mom's gonna start getting Saf ready for back to school!

Peace
Nix

Sand.............


...and surf!


Playing with Winny........

A social story for everything........

A sad week in the Seifert home. As you can see by the social story, our cat Oliver went to go live with the stars and the moon. I think that's stupid, he liked living at my house with me. Mom and I talked about it with the help of the social story and she asked me to tell Nixi where Oliver was...I just said, "gone". Yesterday when mom was doing my diaper I asked for him and mom had to remind me that he wasn't here anymore. Mom asked me where he was, and I said "Oliver a rocket to the stars and jump over the moon." Rockets are really cool, and jumping over the moon would be rad and all....but I still think its stupid that Oliver isn't here with us anymore. I miss him. He was my friend...I love him and I miss him.


The rest of our week was pretty good. Had two great days at summer school. We got some new kids, triplets! They're 3 yr old, one has autism and the other two don't. They're pretty cool. I did a great job of making sure they all felt included, even referring to one by name during singing time to make sure he didn't miss out on his turn to choose a stretch during our quiet song! We did an awesome "feelings" treasure hunt on one day and had a major playdough-fest the other. It was really fun and the weather was great. Both Nix and I have yet to have another meltdown during summer school since Heather and mom have included the "all done" ritual to signify we're on to a new week. Its great!

Nix's OT, Ms. Jo, came on Thursday and I just think she's the neatest. She always brings us awesome games to play, and because she's an OT they all touch on one of our sensory needs. There's a positive and a negative to that, though. Seems I always end up getting really overstimulated when Ms. Jo is here...she's kinda like Disneyland. Generally I've been coping with it well, but not so much this week...especially on the heels of Oliver. Nixi generally does great when Ms. Jo is here but is overstimulated and agitated after she leaves. This week we did balloon paddle ball, a Dr. Seuss game, and something goofy with foam swimming noodles! Ms. Jo is on break until the middle of August so during the interim mom's gonna try to figure out some ways to help "ground us" when the visits resume. Nonetheless, we're getting a lot out of the visits and mom couldn't be more pleased with how Ms. Jo has turned it around and become super pro-active!

Nixi has crashed again. Not sure it it may be because Oliver is gone, 'cuz she went downhill the day after. Remember, she's never come all the way "back" from her other downward spiral. Now she's doing even worse, again, a lot like when she first crashed a couple of months ago. She's back to screaming a lot, hitting a lot, hitting herself a lot...and just generally feeling pretty miserable. Oliver not being here is a big change, whether she was all that into him or not. Maybe that's it. Hopefully that's it. Poor kid.

With that, I'm signing off....make sure to check back in next week to see how this all pans out.

xoxo
Saf

What's more fun than a box.....?


TWO boxes!!!

We had a pretty fun week this week! Saf did great both day in summer school, I did pretty good also. We did some shape treasure hunts and read a cool book about a chameleon with an identity crisis, because he's always changing colors and such. He finds a friend chameleon to hang out with who changes just as much as he does and he's real happy he found a friend that's just like him...different and always changing! Neat book! I danced my tail feather off during singing time and sang at the top of my longs...it was so coooool! Mom's gonna try to get some video of summer school sometime here pretty soon.

I had a really fun visit with my OT, Miss Jo. She brought over some playdough and a song about making pizza and her, Saf, and I had a blast. Check out the video...I even tried to get Heather, our BIA, into groove...she rocked out until mom turned the camera on her! It was really fun, Saf an dI really like Miss Jo...and Heather, well, we love her. So that was an total blast!

On friday mom thought she'd push the envelope with us and try taking us to a pet supply store we very rarely frequent to pick up food for our kitties and to challenge us. Challenge it was. Before we went mom explained to us where we were going and drew it for us. Fair enough. As we started to pull into the unfamiliar parking lot Saf started to get nervous and I just said "no." Mom said we needed kitty food so we needed to go. she got Saf's vest on and Saf climbed out of the car. Remember, Saf is totally freaked out by cars that are idling or moving...unless its ours. So, a car drove by and Saf started screaming and refused to hold mom's hand...she refused to get back in the car...it was a mess. She broke free from mom and bolted for the sidewalk...right into the path of a SUV. Mom grabbed her arm just in time and yanked her back. Some lady came out from a jewelry store offering to give Saf a balloon?!?! Nice and well meaning but NOT THE TIME! So, mom politely said, "my daughter has autism, please leave us, she'll be ok."..because the woman coming over made Saf even more upset. Mom held onto Saf with a death grip and got me out of the car. I was good to go....until we got into the store. I wanted to pull all of the bags of food off of the shelves and mom just wanted us to get our food and get outta dodge. Saf got to carry kitten food and I got to carry Oliver's food...but not without lots of ear piercing screams. Again, well meaning but not the right time moment as the checker cut us off and tried to take the bag of food from Saf. We were both screaming. Mom said, "both of my daughters have autism and they are fine, they're going to carry the food to you so please just move." We checked out, but not before a patron had to ask mom a ton of questions about where Saf goes to school, etc...really, she wanted to talk about her daughter who teaches at a school an hour away for moderate to severe kids. Everyone involved in the autism community knows each other, don't you know. Truly? Anyhow, we got the heck outta here and Saf pulled it together...I screamed all the way to the car. It was pretty hardcore.

Mom used to take us someplace new every other Friday. That stopped when I started getting really uncomfortable in my own skin. It isn't always safe for mom to do that with the two of us anymore. We have a tendency to run when we're scared or uncomfortable. So, new goal...with Heather's help we'll start going to unfamiliar places more regularly. I think it'll be rough, but good.

I'm still having at least one HUGE meltdown a day and number of smaller ones throughout. I'm hitting/kicking 50+ times a day and just generally still struggling. It stinks. Its a real drain on all of us. I'm a really lovable kind of kid, I just ain't all that easy to love on.

With that I bid you adu and remind you to check in next week to see what crazy stuff we've been up to!

Peace
Nixi

Playdough fun with Miss Jo...listen very carefully and you can hear me coax Heather ("dance Heather, dance")into getting her boogie on!

Happy 4th of July!!!!

Great news! Mom made me a social story book about how I should and shouldn't behave at summer school, they did the "all done" ritual before moving on to the week's new theme, and I had an absolutely AMAZING week at summer school! I did great, I enjoyed myself, and no meltdowns! Even with my swinging before I leave the park ritual being disrupted I was able to pull it together so I could stand in line with my friends and sing the goodbye song. I've never in my life been able to recover so wonderfully from a disruption in my swing/park ritual. Just a tremendous accomplishment, if I do say so myself!

Nixer had a fair week. She did ok at summer school but still isn't totally "back". The Occupational Therapist brought over a SPIO suit for Nixi to try...its an official compression garment, not like the binder she's been using. Now, the theory behind compression/deep pressure as well as weighted vests, etc is that when you're getting that proprioceptive input you are less likely to be stressed by, and to respond to, sensory stimuli. We can say this about the SPIO, it is either too little compression or the suit itself is too big so its not providing the right amount of compression because Nixi was WIRED for the two days she wore it. She couldn't stop moving, ever...total motor agitation. If she was on the couch she was sweeping her legs back and forth on the cushions...if she was in bed, she was making sheet angels and not sleeping at all...tired, heck no...she was energized, loud, and just generally a savage! :) Mom put the binder back on her and...voila...motor agitation gone. Sadly, she's been averaging one nuclear meltdown daily, nonetheless. Poor kid is still in the grips of it all. As mom's best friend and others who worked with me when I was Nixi's age have been pointing out...just about every new scary thing Nixi is going through is something I went through when I was 2. The great news about that is that I don't have those same concerns anymore so that means Nixi probably wont either. I guess I'm a little bit of a sneak peek when it comes to what to expect for Nixi. While we're so different, its mom and dad are shocked at how similar Nixi's path has been to my own.

We went shopping...check out our visual shopping list and try to figure out what we made!

Stumped?! Mom made Swai fish in red wine marinara with feta cheese and black and green olives. I even ate some...yeah, you read that right! Crazy, I know. I think it was the satisfaction of having been involved in the process of getting all the ingredients that made me do it...and I LIKED IT! :)


Its HOT up here, 106 today and in the 100's for the rest of the week. Mom painted our toenails "Racey Rouge", as fun for us to say as it is for us to wear! We'll get to do the water fountains in summer school this week and just have a blast. I just can't wait to see what this week brings! Hope you all have an amazing 4th of July, we will 'cuz dad's off and we all just get to hang out and have fun!

xoxo
Saf

Lot's of fun today in our pools!


Can somebody tell Nixi I'm NOT a horse...or pro wrestler?!


Check out Nixi making a call to her people...


Here's me tripping out on leaves in the pool...soooo cool!