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!