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...

Happy Memorial Day!

We had a really interesting week. Poor Nixi is still in a funk...it'll be a month this Wednesday. She just cries and screams a lot. It really upsets me because I don't know why she's upset. She'll be fine, laughing and playing one minute, and a screaming mess the next. From a sensory standpoint its really loud and unexpected so I have a hard time not hitting her. Its kind of like a knee jerk reaction, the problem is it makes her cry louder. So, I've been spending a lot of time in my bedroom because we have a no tolerance policy on hitting. Nixi's spent some time in there too because she's been hitting mom. None of us know how to make her feel better and we're just hoping she snaps out of it.

Kids with autism go through cycles, a plateau of symptoms punctuated by periods of regression or worsening of symptoms...I think we've talked about this before. For example, I cycle about every 3 to 4 months. When I cycle I am out of sorts, my symptoms gets worse, and I'm all around miserable. For me, it usually lasts about a week or two. However, when I was a little older than Nixi is now I went into a cycle that lasted for over two months. So we're all hoping that's what's going on with Nixi. The other option is that this is just a progression of her autism and this is the new norm. HOPE NOT!! Whatever it is, mom and dad will keep trying things to make her feel better and eventually they'll get it pretty well figured out.

So, I had a little trouble this week getting ready for school because Nixi's "out of sorts" had me "out of sorts". I managed to have a great week and even got to be "teacher" and lead my friends in singing "Slippery Fish" into the microphone during song time. Teacher Jenn said I rocked it, singing right into the microphone and doing a little dance. So fun. We also made pirate hats! I guess this is my last week of school...although I'm pretending it isn't so. We'll have a cool carnival on the last day, Thursday.

That's about all we have going on. With Nixi in the space she's been in its been hard to do much and its been a lot of everyone just trying to keep everyone else ok. Triage, like mom says. We're ok, we'll be ok...its just hard right now. We each got to go on a solo outing with dad this weekend and that was super cool. Nixi went to Target and I got to go to the petstore, all by ourself with daddy. Pretty darn neat.

Check back in next week to see how my last week of school went and to see if Nixi has snapped out of it!

xoxo
Saf

Nixi rickshaw..............


(Until mom figures out how to make better quality video with her phone, she's gonna go back to using the old video camera.)

In honor of Mom's birthday....

....this post will be short and sweet. Pictures and video only! Enjoy...and forgive the goofy video formatting, mom's still learning all of the features on the new iPhone4 that we got her for her birthday! Check back next for a a more in-depth update!

xoxo
Saf

Quite the week. I'm feeling a bit wonky post-grandpa visit and I also went to the Early Intervention group again. I wore our weighted vest, and the OT gave me some "heavy work" to do in the treatment room afterwards. That made a HUGE difference in terms of my being physically agitated afterwards. Unfortunately, I was still an emotional mess afterwards and remain so as I type. I just cry and scream throughout the day, and my sleeping has been at its worst. They had visual aides for me but they were confusing. The pictures didn't accurately depict what we would be doing, so they were fairly useless. Mom was really upset by the lack of help/teaching/modeling that was being provided by the teachers, among other thing, and it made her burst into tears when we got into the treatment room. Its just not a very well executed group, good idea but execution poor.

Not to worry...I'll get my fill of group and friend time this summer. Because the school district doesn't offer a summer school for Saf and her classmates, mom is gonna make one! It'll be two days a week and it will follow the same format and structure that the kids have been following all school year. Its going to have a special emphasis on social skill, self-esteem, and verbal expression. Heather, our BIA, will help teach on some days and we'll have some other "guests" volunteers. It'll be super cool because every kid can bring their siblings and their mom or caregiver. So, we'll get to hang out with kids of varying ages and abilities. Other moms and caregivers will have lots of chances to participate by reading books during story time, leading and art project, singing songs, etc. Its what mom calls "the grass roots summer school." If it goes well, maybe next year Regional Center or the school district will kick in some staff or some money for supplies...this is all out of mom and dad's pocket. But mom and dad don't care as long as we all have an awesome summer experience! Like mom says, "if they wont offer what the girls need, we'll do it ourselves!" I know that other parents will be just as excited and want to get involved...so its also a neat chance for mom and the others to support each other, too! All in all, some extra work, but well worth it!

Saf had a great week at school. Thursday morning Carson's mom asked if we could take him into class with us. Saf and Carson held hands and when mom asked, "are you guys ready", Carson said "I am ready." It was sooooo cool...this was a barely verbal kid just a few months ago! My big sister and her friends RULE! They've hired Saf new teacher for next year and teacher Jenn approves...hopefully we'll get to meet her soon!

We had some great park days, with Saf asking to wear the weighted vest when we get there and doing great while we're there. We've had some rough days, too. I think we about cleared Target by both going mach-10 meltdown on Saturday. It was our first time taking dad with us and we just got a little thrown by the whole thing. We recovered and had a great weekend. Check out the video of Saf's new big girl ATT, all terrain trike, and my very first time pedaling a trike on my own. Mom and dad figured out that if they tell me to pedal, while I get the physical motion, I wasn't quite understanding the pressure needed to make the pedals go round. However, if they tell me to march I can pedal like a demon...'cuz when Saf and I march we stomp our feet pretty darn hard. Whatever it takes...I was a lean, mean, trike riding machine!

Have a busy week full of visits, school, and fun ahead of us. Check back in next week to see how it all went!

Peace
Nixi

The trike montage.....

Mother's Day............

We're baaaaaack! Finally got our password reset and the blog is ours again! Since we're writing this on Sunday and its Mother's Day...we'll be brief.

We had an interesting week. I had some great school days and, with the help of a weighted vest, some great park days. Nixi had a rough week following her Early Intervention group. Mom and the folks working with her will work on making it less over stimulating. Hopefully it works.

We had a great visit with grandpa Cummings, Weishi,and Cate. We bounced in our clubhouse and even took them to Burger King. It was awesome!

Mother's Day today was pretty good for mom. We behaved as well as we could and she had a lovely afternoon and evening listening to us sing and watching us dance.

We're looking forward to a busy week this week and will have lots to report next blog.

xoxo
Saf

An update and a love letter to our girls.........and autism.

Alas, it is time to hand the reigns back over to the girls. Starting next week Saf and Nixi will be back blogging full force!

This week was full of excitement. Saf's class had a field trip to the firehouse and Nixi and I got to tag along. It was really fun. Saf was beyond excited about going on the school bus...nervous, but excited. The night before she would randomly say out of the blue, "all done school bus" or "all done teacher Jenn" to let us know that she was a little anxious. Come the morning, she was saying "Mommy, school bus fun day!". She got on the bus no problems and had a blast. At the firehouse her and Nix were a little cautious of some things. In order for the firefighters to show us the ladder on the firetruck they needed to have the engine idle. Saf is afraid of moving vehicles, so the sounds of the engine scared her. She sat with me and I squeezed her the whole time, as deep pressure makes her feel better. Nixi got to sit with teacher Jenn...a real treat! When the fireman came out in all of his gear both girls were not having it. They got to climb up into another firetruck...engine off. They loved it and didn't want to get out. Later, Saf got to sit with her best bud, Carson, and she was happy as a clam. Nixi was just thrilled to get a juice pouch! All in all, a fun day.

Pretty much a good week, lots of ups and downs...but a good week. We went to Bravo Farms and said "hi" to all of the animals, hit Burger King a few times, and the park. This week Nix's services start back up so we'll be back to our normal routine 100%. Also, on the weekend we're expecting a visit from Grandpa Cummings, Weishi, and Cate! So make sure to check back for a full report of our exciting week.

Now, we'd like to take a minute to leave the girls a love letter to read when they log back on....we don't mind if you take a peak!

To our dearest daughters, Safia and NixiRogue:
How to put into words the level of love and thanks that we have for you?
Safia, our old soul in a cute as a button package. You are amazing. You are smart, funny, kind, thoughtful, generous, and determined. From day one you have been a take action kind of kid. You spent a whole summer watching phonics videos on Youtube, practicing articulation in your bedroom for hours every night, and proudly sharing new words with us as you got them. You started school with the bravery and determination that you used to speak...and now you answer questions about your day and tell us when you're happy. You have friends that you made all on your own, and they like you every bit as much as you like them. You motivate your sister to be joyful and silly, and you do it on purpose. You coax her into being involved and in touch by saying things like "Nixi, more play?". You are an amazing pet owner. You pet all of your animals every day and tell them how cute they are and give them kisses. You tell us what you want to eat and where you want to go. You notice when we're sad, or sick and you give us a "hug" by leaning into us or rubbing our arm. You are such a beautiful kid. People will like you. You will have friends. You will go to school and learn, you will also teach others. You will slowly realize that the world is full of a lot more good things than scary things. You will trust those around you who care for you to keep you safe. You will be able to relax and let go of some of the control that often drives you. You will do amazing things with your life and you will be happy. Life will be a lot of work, but you can do it and we'll help. We love you.

NixiRogue, our fragile little soul in spunky camouflage. You are so beautiful, inside and out. You are sweet, silly, bright, loving, and fun to be with. You came into this world as a frightened, hesitant little bundle of nerves. You have blossomed into a curious and questioning little kid. You have learned that adults are cool to be around and can do interesting stuff. You have found that big kids are even cooler than adults and you love to interact with them. You can sing your ABC's and you love to dance. You took a leap of faith and decided that we are capable of taking care of you and keeping you safe. You go into new environments with enthusiasm and wonder. You explore everything. You find ways to have fun with something that others might pass by, like a stick or a leaf. You have let others into your inner circle and enjoy meeting with your teachers. You tell us what you want to eat and what you want to watch on TV. You snuggle your dog and cats and give them kisses on their lips. You care about your big sister and always ask "Fafi?" when you think she might be missing out on something cool. You like your weighted blanket and your trying new things every day. You are a wonderful little person. You will be happy. You will be able to enjoy people, places, and things for longer than 45 minutes. You won't even notice how much time has gone by because you'll be having so much fun. You'll get more and more comfortable around other kids. One day, you will want to have friends and on that day they'll come in droves. You will share the magic of a stick or a leaf with other kids and they'll think its weird but cool. You will try new things and see that they aren't as scary as you thought. You will continue to trust us and slowly learn to trust others. You will have a wonderful life and we will keep searching for ways to help you be happy. We will continue to get to know you, you will continue to get to know yourself, and we'll all get better at understanding each other. We love you so very much.

And last but not least.......an Ode to Autism........

Dear Autism,
You have taught us to love without expectation of anything in return. You have taught us to slow down and see the beauty in the small things. You have taught us that life, interactions, and relationships are much more rewarding when they happen organically and without micro-management. You have taught us that we truly cannot control anything and that expectations of people, places, and things will often leave us disappointed and having missed the true journey. Sometimes you are our teacher, often you are our enemy...always you are in our lives. We thank you for forcing us to change the way that we look at the world, our selves, and our family. While the path you lead us on is often full of bumps, pot holes, blind curves, and brick walls...we trust that when we get to our final destination it will have been well worth the ride. Just remember sometimes that our kids are just kids, and we are just humans...so be kind and cut us some slack from time to time!

With that.........we will say goodbye until next year!

Sarah & Mike

The girls' post fire station interview!

Our real baby, baby is 2!!!!!

Nixer's birthday........




Easter.........




Tiring end to a loooooooong week. While Saf didn't have school this week, it was still a busy one.

We had a follow-up visit with the dietitian at Regional Center. Saf did really well, Nix went into a meltdown at about the 45 minute mark. Saf was able to ignore Nixi's screaming for about a half an hour more and then they both started to go. So, we promptly got the heck outta dodge. The dietitian had some good suggestions for introducing probiotics to Saf's system as a means of regulating her bowels for the long term. We're still doing the daily Miralax and its working, but if possible it would be great for her body to do what it needs to do naturally.

We had a visit from Nixi's OT (occupational therapist) that was totally underwhelming. If you can recall, well over a month ago she said she was going to put together a "sensory diet" for Nix that would include balancing carbs and protein every two hours with sensory activities in between snacks. What'd we get....a crappy list of snack foods that mix protein and carbs, no sensory activities, and no schedule. Really? Its ridiculous. Needless to say, we're totally disappointed and frustrated with the lack of "action" and initiative we're seeing.

The rest of the week was a rotation of Burger King play area and hanging out in the front yard in the bouncer house.

Nixi's birthday was wonderful. We learned from Saf's birthday that we needed more visual supports throughout the day, so we added things to the visual schedule like when gifts would be given and how many. It worked like a charm and it was a blissfully meltdown-free day...and Nixi had a wonderful time! Thank you to all of our family for the wonderful gifts, $$, and love. Really helped to make it an amazing day for both girls. Easter was a little dicey...but we expected that with it being the day after the birthday hoopla. None the less, another fun and wonderful....despite the meltdowns. Make sure to check out the video!

This week I want to touch on something that is currently proving to be a tough one for Mike and I....level of functioning. Kiddos with Classic Autism (and all spectrum disorders) vary so greatly, so one of the specifiers within the diagnosis addresses level of adaptive functioning. Those level of functioning are high, moderate, and low. Lately we've been getting a lot of comments from people like, "So Nixi is the higher functioning one, right?" Its a benign comment asked solely for informational purposes, but its like a little dagger to the heart. If we say yes, then what does that make Saf?

Professionals that have worked with Saf have always said that she was unique and that she is unlike any other children they have worked with. While she clearly is confused about social interactions and nuances, she craves them. She is attuned to others emotions almost on an empath level. You cry, she cries and tells you "all done sad." She has always exhibited acute performance anxiety, which infers a deeper social understanding. She gets it that if she can't do something or fails when trying that others will see that and she is horribly self-conscious. She is self-conscious! That means that she has a complex understanding of herself in relations to others. From that perspective I think she's exceptionally high functioning in the Autism world. Unfortunately, due to those very qualities as well as her verbal apraxia and motor dyspraxia, her adaptive functioning out in the world is moderate. If she trips she immediately scans the room to see who has seen her. If someone asks her if she's ok, they've confirmed that they saw her and she begins to scream and cry out of embarrassment. When Mike and I are laughing at a joke between the two of us she cried and screams and says, "all done silly" because she doesn't know why we're laughing. To make it ok we have to stop laughing and she has to fake laugh so that she feels like she's part of the joke and not the joke itself. Because she is anxious all of the time, she must employ a number of rituals to help her feel as though she has some control over her environment. These rituals often prevent us from leaving the house on time, prevent her from functionally playing with other kids, and absolutely torment her.

Nixi is exceptionally bright, her speech is articulate/intelligible and her vocabulary is expansive. She walks right up to you and says, "Hi, how are you?"...then she turns her little self around and walks away. She has no clue that she needs to wait for a response, nor does she care much if you give one. If you ask her how she is, your talking to the back of her darling little noggin. At this point Nixi can walk right into a room full of people and, as long as there are things to touch and explore, she never looks back. There's no scanning the room for friendly or scary or familiar faces. She doesn't care who's there, she's not there to see people...she's there to see things. She'll bring you toys by the armful, only to walk away just as abruptly when she's done with you...weather your mid-sentence or not. When I cry she laughs, sometimes patting my face with her hands to play with my tears. If you ask her questions that are out of her "schtick", she looks at you blankly and/or walks away. I could go on, but you get the idea. In the Autism world, she's pretty typical "autistic"....she's like the other kids that people like our BIA, Heather, works with. From an adaptive functioning standpoint...she's able to communicate her basic needs (although, unless its a highly motivating desire...she's generally not spontaneous with routine requests, we have to prompt her repeatedly and often the answer is a repeat of what we're just said...echolalia), she isn't motor dyspraxic so she is capable of doing things like brushing her hair and getting dressed (of which she does neither because they aren't highly motivating tasks), etc. From that perspective....sure, she's higher functioning. Its the social areas where she's lower functioning than Saf. If she isnt able to be empathic to other's feelings and needs, who will be her friend? If she can't retain her focus because something across the room looks more interesting, how will she apply that amazing intellect that we know she has.

I've said it before, and I'll say it again....Saf has the motivation but lacks the ability and Nixi has the ability and lacks the motivation. I'm not sure what get you farther in this world....intelligible speech and an amazing vocabulary or a really great smile from someone who is genuinely thrilled to see you? Both of my girls have a number of challenges now and in the future. They both have areas in which they are high functioning and lower functioning. So, while its a benign questions, its a very complex question with no definitive answer...and who the hell cares, anyways. They are who they are, they are where they are, and they will grow and change every day!

With that, enjoy the video and...............adios! I'm outta here, I spell checked but that's the extent of it so pardon any other errors and remember to check in next week for our last "parent post" before turning the blog back over to the girls.

Sarah

Nix's birthday montage...we kept it very low key in anticipation of Easter being the next day......


Easter: Part I..BASKETS


Easter: Part II..THE HUNT!