HOT HOT HOT week! We had temps ranging up to 108! Despite the heat, we were cool...aren't we always?! We played it pretty low key this week, other than summer school we did a lot of hanging out front playing in the sprinklers, etc. We hit Burger King twice, but really tried to stay close to home base.

Saf was struggling at summer school. She was able to pull it together each day, but it was rough for her. See, we had some changes this week: Heather was running late (Saf's used to her being there when we get there), we lost 3 kids, we got 2 new kids, and Saf's buddy from school got a major haircut making him nearly unrecognizable. Saf blew a gasket! A lot of "all done new friends" and "Heather?". Mom and Heather also realized that they had forgotten to do an "all done" ritual to signify the end of a topic and intro to a new topic like they had asked Teacher Jenn to do in regular school. We've been changing themes weekly! Mom didn't realize that was causing a problem until this week when Saf was asking about doing activities that we had already done. Mom's been kicking herself for forgetting but its just impossible to remember everything. So, hopefully with the "all done" ritual and getting used to Kameron's haircut and new friends, Saf will be ok...I think she'll be just fine. I did great this week in school....until I had to take off my abdominal binder (which I refer to as "hug") to go in the water fountains. I lost it, but when I got home and mom put it back on I was just fine.
All in all, a fun week at summer school despite the bumps...we expect those, so we aren't too shocked when they happen...we just keep on keeping on!

I'm still having a rough go of it, but things are considerably better since I've been wearing my "hug". In fact, much like the other day at summer school, the only time I go into a total nuclear is when its off. Unfortunately, mom took it off of me today to put on sunscreen and it wasn't good...check out the video. It took me over a half an hour to calm down...but I got my "hug" back on and slowly things got better. It seems that when I'm getting that constant proprioceptive input I don't get overwhelmed by my "sensory environment". I mean to say, I still have a number of meltdowns over things like transitioning from one thing to another or changes in my routine, but when sensory overload portion is taken out of the equation the meltdowns are much less intense and I recover much quicker. That's a GREAT thing! So mom went to the maternity store this weekend and bought me 3 more binders so I can wear them in the fountains, sprinklers, etc and not have to worry about it getting wet. Heather is also teaching Saf to cover her ears when I scream in an attempt to give her something to do other than hit me! I like it! :) Oh, and Saf got a new haircut...pretty cool, huh?

So, we're all hanging in there and just trying to find our happy place. We'll get there, its just gonna take some time. Hope you all had a great week...catch ya later!

Peace
Nixi

Check out Kit being the ULTIMATE therapy cat...he chose to do some OT with us of his own volition! Kit RULES!


Rocking out to a show from Australia..The Wiggles


When I don't have my "hug", the world just ain't right.

Happy Father's Day!

So, its Sunday and its Father's Day. How to thank dad for all he does and all he puts up with? There's no words....so we gave him some pictures that we made of him and a Topsy Turvy tomato planter! Yep, nothing says you make our world a better place than construction paper and tomatoes...and I'm not being fasicious! I know my dad...and he LOVED it!

We spent the day hanging out front in the RV, 'cuz dad worked really hard over the past couple of weekends converting a fence into a gate so we could get the RV out! It was super fun, we watched some shows and had lunch out there. All in all, I think dad had a great Father's Day!

Last week was pretty good. We had to awesome days at summer school. We did an obstacle course one day and made a ladybug shaker/noise maker the other day. My friend Kameron's mom read us The Grouchy Ladybug and she did this really cool voice for all of the ladybug's parts. I liked it so much that I told dad it was my favorite part of school and even did the ladybug voice! I really like hanging out with all of my friends and, even though its hot, its a lot of fun! Nixi did much better wearing her abdominal binder. Can't even remember her getting very upset for no reason...a couple of times I may have upset her...but she was in a much better space!

Thursday mom decided to try taking us to a local library summer reading program. They do storytime and arts and crafts, etc. It was almost a half an hour away, but we were game. We got there and it was a whole lot of kids packed into one tiny room. I did fine...within the first 5 minutes Nixi went ballistic, I mean the kid lost it completely. Mom had to take her out of the room and try to help her calm down. I did an awesome job of staying in the room by myself and listening to the story. Mom got Nixi sort of calmed down enough so we could stay and do the art project. We made a fish. It was kind of stressful because they just dumped all of the supplies on the table and we had to fend for ourselves. I'm used to a pretty structured process when doing crafts like this and I was starting to fade. I REALLY needed them to give me the googly eye...the one item they didn't dump out at the beginning. See, I need to try to get my craft as close as possible to the example or it bugs the heck outta me. So, I started getting exceptionally anxious about the googly eye. Mom got me one, I slapped it on there, and we out! We may or may not go back...next time we'll try to have Heather there so someone can be with me if Nixi needs to bail.

Bummer to report, while Nixi is doing much better than she was a few weeks ago...she's still just not feeling right. Maybe its a mix of the terrible two's and autism...I know I sure had a rough time with the combo. See, we don't get to skip any of those stages just because we have autism. We still go through the terrible two's, independent tween's, puberty...the whole ball of wax. The only different for us is that its amplified by the autism and all that brings to the table. So, while some of Nixi's meltdowns may be perfectly normal two year old business, the fallout from it is not. Did you know that the average "temper tantrum" only lasts approximately 3 minutes? Sounds quick, but 3 minutes is a long time. Our meltdowns typically last anywhere from 20 to 45 minutes...sometimes less, sometimes a whole lot longer. That's just an example of how, while things may start out very neurotypical, they usually end very autistic! Total drag. The good news, she'll get past it just like I did. A year ago nobody would have thought I could have gone to the library and sat in a teeny room with a bunch of kids, let alone by myself for a few minutes....but I did, and Nixi will, too. And if she doesn't, that's ok, we'll take it as it comes.

Another little bummer, I'm withholding my bowels again...held it in completely for 5 days. Yesterday I finally had to let it go because mom loaded me up with so much Miralax I had no choice. A constant battle this whole bowel movement issue is for me!

However, happy to report that our dog Winston and the kitten..Bodhi...are slowly becoming friends! Good thing 'cuz we really have fun with the kitty and love him very much!

So, there's the week in a nutshell! Hope all the dad's and grandpa's out there had great days...we love you all and think you're all the best! Check back in next week to see where we're at and how we're doing!

xoxo
Saf

Here's a little video of me playing with two of my kitties...Kit and Bodhi..

And the beat goes on.....

I wish I could say we were doing a ton better....but I'm not big on fibs! I'm still all wonky and Saf is feel the repercussions of it.

Our first day of summer school was amazing! We all had a really great time and we made suns out of paper plates. It was so cool. Unfortunately, I was toast for the rest of the day. Way overstimulated by all the days events and all around out of sorts. Saf was on cloud nine...she was in such a great mood, walking around the house talking up a storm and laughing. She coped really well with it. The next day Saf asked "I want to go to summer school please...I get to see Heather". I was excited about going but faded in the first hour, crying and just all around feeling off. I made it through the day, but I dragged Saf down with me. By snack time she was screechy and upset. The day ended well enough...but there was more to come!

I've started having sensory meltdowns on the scale that Saf used to have them. I just implode and I want mom to hold me really tight, like she used to do with Saf. If mom loosens her grip even the littlest bit before I'm ready I meltdown even more. So, mom learned from doing this with Saf that sometimes she gets a cramp and can't keep up the pressure for as long as I may need. Solution: she found her post surgery abdominal binder from when she had me and Saf and wrapped that around me tight. I've been wearing it ever since and it makes a huge difference. While I'm still pretty emotionally brittle...I haven't had a nuclear since the night she put it on me. :) I also am very in to wearing tight socks and sock shoes (check 'em out in the pic above)...right now anything that provides compression is A-ok! Looking forward to summer school this week, as I'll be wearing my binder the whole time! Can't wait to see it it makes a difference! The neat thing about it is that I can wear it non-stop without worry about muscle habituation which happens with weighted vests. I not only get the deep pressure but every time I move it shifts and that gives me sensory stimulation....its a total package!

Sadly, Saf's motor imitation and need to do things first has continued to spread into other areas of day. We went to Bravo Farms and it was really fun until we went to get ice cream, usually the favorite part of the day. I had been a little off my game while we walked around and looked at the animals which put Saf on edge. Once we got our ice cream and I started using my spoon, something Saf is still working on, it went south quick. It ended with both of us screaming at the top of our lungs and mom having to swiftly get us to the car. The next day we went to Petsmart. I knocked something off a shelf and it made a loud noise...I lost it totally. In response, Saf went ballistic, needing the dogs at the adoption event to sniff her hand in a particular way and not being able to cope when it didn't happen. Lots of screaming and another hasty exit. Mom and dad are considering medication to help Saf with her anxiety. My current state makes it much worse....but even when I'm doing good its still always there. Its a huge barrier to Saf getting to enjoy life. Mom and dad aren't thrilled about giving meds to a 4 year old, but its something they have considered here and there for a long time. Now its time to really give it a thought.

On a fun note, we got a new kitten. So far he's not a tremendous fan of the dog, so that could be the kiss of death for him. If he can't live with the dog....he can't live with us. We'll see how it goes in the coming days! He sure is cute, though and we're hopeful that he'll get used to us all and do just fine! We also got a pedicure from mom...love that electric blue! Saf also got a really cool sweatshirt from Nana and, as you can tell, she was pretty pleased with it...check out the picture of her with the pink top with brown horses!

So, make sure to check back next week to see how summer school goes with me wearing my girdle and to see if the kitten gets to stay! Never a dull moment!

Peace
Nixi

Saf discovers the joys of water misters at Bravo Farms....

School's out for summer!!!!!

Intersting week, filled with lots of up's and down's...no big surprise there!

It was my last week of school...and my last week of classes with Teacher Jenn. While I'm still wrapping my brain around the whole thing, I definately understood that school was ending and it made me really sad. See, school is one of the only places where I can go and feel 100% great about myself. Nixi isnt there to steal the spotlight, mom isnt there hovering over me, and all of my friends and teachers think I'm pretty cool. I get to be myself, not a big sister or daughter...I just get to be Saf. Its my chance during the week to really shine. I'm not sure what summer is going to be like. Mom is putting together this summer school thing, but its just not going to be the same. Nixi and mom will be there...but maybe that'll be a good thing...a different but good thing. At least I still get to see some of my friends and stick to a routine I really love. We'll see. There's going to be about 14 kids...if everyone shows up. Lot's of opportunity to make some new friends, I guess. Hopefully when Tuesday rolls around and its our first day, both Nixi and I will be in a good space and ready for a new experience. I haven't even begun to process the fact that I'm not gonna have teacher Jenn as a teacher ever again. I can't bare to think of it..so I'm not gonna!

Nixi, Nixi, Nixi. That kid is M-I-S-E-R-A-B-L-E! She looked like she might be coming out of it but that was short lived. I think its going to be a slow climb out of the pit for this kid. When I cycle, one day I wake and everything is back to normal and good again...just like that. But Nix seems to be a little better than she's been in the past several weeks...so I think she's slowly on her way. After my school carnival she was the most overstimulated that she's ever been. She was screaming and freaking out so bad that I didn't even yell at her or try to hit her or kick her...I knew it was serious and just sat quietly trying not to make it any worse. She was fighting mom to get in and out of the car, kicking her and hitting her. She was shaking and just totally out of control. Both of us have been out of sorts since the carnival...but she really got the worst of it. Poor kid.

As always, the more out of control and labile Nixi is, the more controlling I become. My motor immitation (immitation of other's physical movements)and need to do things first has ramped up a gazillion notches. Example: if Nixi falls I scream, cry, and shout "Saf's turn fall" and I go to where Nixi was and replay her fall. Another example: if Nixi finishes her snack in the car first, I scream "I want empty" and I empty the contents of my snack bag into my mouth. This weekend I rammed so much food in my mouth that I started choking, but I kept pushing the food in. Mom had to pull over and empty my mouth with her hand. So, until things are back to normal mom says no snacks in the car. If Nixi turns direction in our play cars out front, I scream "No Nix" and have to get in front of her so its like it was my idea to change directions. If she doesn't comply, I hit her. Literally nearly every movement she makes I need to repeat and if that means I need to get her out of the way to do it, I do so by any means necessary. Needless to say, I've been spending a lot of time in my room "chilling out." What makes it even worse is that Nixi is really echolalic (repeating what people say after they say it), as well as socially clueless. So when I'm upset she repeats everything I say which makes me even more upset. No matter that I screaming at her and getting ready to hit her, she gets right up in my face and repeats everything I say and laughs. Because I say something like "NO!", and she ehos it back, and I say "NO!" again because I want her to stop...she thinks we're playing a game of back and forth and has no clue that its not a game or funny. So, at this point in time we're really bringing out the worst in each other. It sucks...but this too shall pass.

So, that's where we're at. CHAOS!!! Check back in next week to see how our first summer school days were...and to see if we've mellowed out at all!

xoxo
Saf


Last day of school carnival fun....


The day before the carnival...an example of what its like in our house at any given moment...


Platform fun...