OMG!!! So THAT'S what sugar is!

Post-cupcake sugar HIGH! Yowwwwwwwwwwwwwwwwwwwwza!

Crazy week. Started with Saf coming down with a fever Sunday night that held strong all the way to Wednesday. So, we didn't do any services until Thurday when Nixi had speech and OT.

Unfortunately, as I mentioned before, when Saf is on the heels of being sick her symptoms are exacerbated. Indeed, this was, and is the case as I sit here typing. She had a rough time getting through Nixi's Thursday appointment. Friday was her day for speech and OT at school, and it was rough. Had a hard time getting her in the mode to go, but she did. It went alright for awhile but we had a major crash and burn at the end, complete with head banging and the sort. The meltdown continued once we got home, stopping only when I brought out the video camera and taped her. Then I showed her and talked to her about what she was seeing.."Saf is mad", then "Saf is sad." She broke down into a weeping ball in my lap and watched the videos again and again until she was able to transition to her nap routine.

See, everyone talks about Classic Autism as a neurobiological disorder, a disorder of communication, a developmental disorder, blah, blah, blah. The thing most people don't seem to talk about is how very mean and sadistic this disorder is. In Saf's case, it took a darling, loving, happy go lucky kid and just chipped away at her until she cracked. Its this shapeless, faceless phantom that follows her and continues to chip away at her and it doesn't stop even when it literally brings her to her little knees. It has robbed her of her self confidence, her light heartedness, her peace, and her absolute right to be a kid. It pounds on her, making her anxious about nearly everything...even her own home, and sometimes, us. We are in a daily, minute to minute battle to keep her with us. How much can a kid take before they completely turn in on themselves and tune out the world? That's a question that we don't know the answer to...and it scares us to the core. There are a number of things that she could do comfortably a year ago that she could never tolerate today. When does this stop? What will this all look like a year from now? Its the fight we'll never stop fighting because we can't, as tired and drained as we may often be. Saf is NOT in this alone, and we will NEVER let her feel as though she is. If you think I'm being dramatic, try staying at our house for a week and see if you don't leave in tears, confusion, and disbelief.

This is not to say we don't have wonderful times. We do. We treasure every moment of joy and try to find humor in moments that are less than joyful. Given all that Saf is up against, she still manages to find moments of pure bliss in just about every day. I just think that you have to acknowledge the horror of this disorder to keep your sanity within it. Every cloud has a silver lining, but sometimes you just have to call a cloud a cloud.......and that's ok. Then, you have to pick yourself up off the floor and get on with it.

---Scraping self off floor-----

On to Nixi's birthday! As I mentioned, Saf was having a rough day on Friday. Nixi wasn't in the greatest space either. None the less, she managed to joyfully scarf down a mini cupcake (her first full sugar treat ever!) and enjoy playing with a new train toy that we bought her and Saf. I think the highlight for Nixi was all of the great playtime spent on the train with her sister. Nixi just adores Saf. Its just the greastest thing ever. So, all in all, the birthday ended great and Nixi thanks all of her family and friends for the birthday gifts and wishes!

We have a visit planned for this week from Nana Cummings and Omi Paul, very exciting. We'll also try to do a full week of services, as well as take Nixi for her 1 year doctor visit. She'll get shots...NO FUN! Should be an exciting week. Have a great one, and check back next week to see how everything went!

Sarah

Saf after we got home from school on Friday. What looks like she's shaking her head back and forth is actually her banging her head into the window...it got more forceful so I obviously ended taping and intervened.


Nixi eating her mini cupcake....turn volume up to hear her strange lip smacking!
Too cute!


The girls sharing and just being sisters, enjoying the new train toy!


Nixi chilling out in the swing...indian style!

The Coolest Kiddie in the CITY!

SCHOOL'S COOL!!!!!!!!!


What an exciting week we had! Saf had her first speech and OT sessions at what will eventually be her school. They made us a video to help prepare Saf. We named it "school", and by the time Wednesday rolled around and I told her she was going to school she was thrilled. On Friday when I told her she was going to school, she clapped her hands and did major happy feet.
While both days were great, as with all things Saf...the ending is rarely as sweet as the beginning. Transitioning for kiddos on the spectrum is rough, rough for all kids....EXCEPTIONALLY rough on kids like mine. See, the classroom Saf was in is full of stuff. Stuff on the walls, floor, everywhere. Neat, neat stuff. Whimsical, colorful, FUN! Saf experiences everything with much more intensity than most of us. Kind of like seeing flourescent instead of pastel...being center stage for the Stones instead of in the last row for Yanni. Catch my drift? Because of this, it takes her a little more time than most to take everything in. Once she's done that, she can actually concentrate on getting meaningfully involved with her environment. The bummer....by the time she's comfortable, focused, and really rockin' something out its often time to go or time to move on to something else. Imagine how frustrating that must be. Add to that the over stimulation of the world in general and you have a recipe for internal disaster. Its one of the reasons why Mike and I are often left feeling frustrated after we try to do something special for Saf. It almost always starts off amazing....and then we crash and burn. We know its coming, its just a matter of time. Nevertheless totally heartbreaking, draining, and crushing when it finally happens. Still, we will continue to try new things with the hope that we'll keep getting better at reading the signs before the crash and burn and maybe just end up with a fizzle.

Ok, back to our great week. We were even able to get out of the car on Thursday for Nixi's speech and OT session at Saf's old treatment space. The week before we were unable to go to Saf's last 2 sessions there becuase she began crying and screaming when we pulled up to the building. On Thursday, I told her that Nixi had to go to "house" (what Saf calls it) and becuase she's a baby we had to go with her. Well, she got out of the car with enthusiasm, went into the room, and once I put Nixi on the ground Saf pointed at her and proceeded to have a blast doing her own thing. She pointed at Nixi to make sure that the speech and OT teachers knew that that's where their focus should be. Pressure off...Saf relaxed and used therapy equipment she had never really showed an interest in before. It was AWESOME! What a smart and spunky kiddo!

Nixi has been having a rough patch since getting over being sick. She's just an all around generally unhappy chickadee. Lot's of crying, doesn't know what she wants, grabbing for us then pulling away. Its hard, and its scary. When you can identfy the problem its easy....when you can't, its frustrating and sad for everyone. Her Early Interventionists have noticed a shift this last week in her openness and tolerance level, too. Poor kid doesn't sleep very well at night, so she's tired a lot of the time as well. Oh, Nixi...what to do with you?

We had a great weekend outside and in the RV! Check out the videos..I'll post them in this entry on Tuesday, Youtube isn't agreeing with me tonight! All in all, a busy, exciting, and tiring week. This week will be even more exciting...Nixi turns 1! Send all of your good thoughts our way Friday for an amazing, drama-free 1st birthday! Have a great week!

Sarah

RV fun......


Saf tends to use a lot of metaphors when she speaks because her intelligible vocabulary is so limited. Also, folks on the spectrum tend to be pretty concrete and literal...Saf is no exception. Here she is at school and about to go into the play area for the first time. She stands for awhile taking it all in, nervous, "stuck"...then she musters up the courage and takes the plunge....


Here's Nixi's first experience on grass. Notice how she keeps her feet curled. Due to her Sensory Processing Disorder, she doesn't like the feel of it and wont relax her feet in an attempt to avoid touching it. Later she tried crawling, holding her feet off of the ground to avoid touching the grass. Silly girl.

And So Saf Said, "Let Plex Eat Cake!"

We had a busy week.

Mike attended one of the 6 mandatory classes we have to take through the county Regional Center to continue to receive any form of behavioral services. They started the 3 hour class off by using a Sea World whale training analogy, comparing the whales to our kids. Very dehumanizing. Also, what poor timing given the trainer killed by her whale in recent weeks...a point another parent pointed out to the guy giving the analogy! This guy is a trained professional hired by the state and he's comparing children with special needs to animals....comparing treatment to training. Doesn't get more sad than that.

Unfortunately, its a not an anomaly. We experience stuff like that in relation to Saf all the time. People always like to tell us how "normal" she looks. Uh, she is normal, she just isn't neurotypical or typically developing. People often say things like, "oh, she's autistic". People would NEVER refer to a person with cancer as cancer. Saf is not autistic. Saf is a little girl, a daughter, a big sister, a friend. She is a lot of things, she just so happens to be living with autism. I'm sure these things may seem petty, and matters of political correctness and semantics......but those are all examples of how we as a society systematically dehumanize and marginalize people with disabilities. I don't think most of us do it intentionally or with malice, its just a really effective way to keep things this scary and heartbreaking an arm's length away. When we compartmentalize people, we absolve ourselves of the responsibility of trying to understand them and their differences. So, its something we're working on stopping...within ourselves and others.

Showtime is playing a documentary, "Dad's in Heaven with Nixon", in honor of autism awareness month. It looks at the journey of a man with living with autism, and living independently due to the support and perseverance of his family. It's reviews look great.......and I almost watched it. I turned it on, got about 10 minutes into it and had to stop. Once it went to a scene of the man, now an adult, sitting on a park bench with his elderly mother I broke down. See, Mike and I are all too aware of the reality that one day we'll be old and one day we'll die. When we're gone, what will happen to Saf? Will she understand why we are gone? Will she be able to care for herself or will we have to rely on others to care for her? Will people be kind to her and take care of her properly? Will she be happy? I always tell Mike how lucky he is because he's older than me. He'll likely get to die knowing that I'm still here to take care of our baby. It may seem morbid, but you have no idea what a gift that is. When I go, she'll be all alone. It is a thought that is absolutely unbearable. She's only 3, and we already have to plan for our death and the stability of her life beyond ours. I cannot begin to explain how terrifying that is. She'll always be our baby and the thought of her being alone, confused, and scared makes me sick...literally sick. This is why we take every aspect of her care now so very seriously. We look at everything we do now as building blocks for the future and her quality of life. Its a tremendous responsibility and there is no room for failure. Just one of the many thoughts that are ever present and weigh heavy on our minds.

Now, on to the fun........a recap of our week. The girls had to go to the doctor. It went as well as we expected...it was HORRIBLE. Saf was terrified and panicked, her lips actually shaking as if she were freezing because she was so overwhelmed. Good thing we went, though, turns out Saf had a raging sinus infection. Nixi got a clean bill of health, and we had a quite rest of the day recovering from the morning's events.

The girls got an aquarium for their birthdays, which we set up mid-week. Total success! They LOVE it! Its stocked with 2 african dwarf frogs and some fish and its just plain good times for all. Saf ran out and saw it and it was non-stop happy feet. When Saf is excited and happy she sort of runs in place and we call it happy feet. Nixi loves it and if you ask her where her fish are, she'll point to the tank and say "ish". Very cool!

For Saf's birthday we went to a road side petting zoo. She just had the best time ever. She was super brave and touched the snout of a donkey! The whole day, minus a blip here and there, was the best day she has had in probably 2 years. She even ate a mini cupcake! At the end of the night, she giggled and hugged me and both Mike and I knew that she knew today was a special day. She has asked me to thank everyone for thinking of her on her birthday. She's in the process of deciding on what cool things she'll buy with all of her birthday money...and, no, she's NOT getting a donkey no matter how much she wants one! She may not have known it was her birthday, but she absolutely knew it was a special day.

Today we went back so Saf could show her dad all of the cool animals, it was just as magical as it was on her birthday...only maybe a bit more so, because we were all there together. Nixi had a close encounter with a goat....turns out goats scare her. Who knew? All in all, what a great way to cap off a pretty neat week.

This week Saf will have her first speech and OT sessions with her new therapists from the school district. As long as I can get her to get out of the car, I think we'll be ok. This is easier said than done, but I'm thinking a promise of the petting zoo or pet store may just do the trick! We'll see.

So, have a great week all!

Sarah

Winston just has a way with the Seifert ladies....


Saf is Dr. Dolittle


Unfortunately, Saf is still struggling with wanting to dress herself this week..


Saf and the frogs have a chat.....


A really good example of happy feet.....

Hoodwinked and Hijacked!

Ah ha....finally cracked the girls' secret code and we're in! Mike and I have hacked the girls' account and hijacked the blog for the remainder of the month! Along with the usual updates, we thought it might be nice to add a little bit from our perspective. This whole month is Autism Awareness Month, and we wanted a chance to help round-out the picture, so to speak, on our lives living with this disorder. We relish the fact that the girls have used this blog as a tool for letting you into their daily lives as kids...just kids. We also want to honor the meaning of this month by focusing a little more on the struggles and challenges of being a family living with autism. So buckle your seat belts.........you're in for a bumpy ride the next few weeks!

And away we go!

Both girls have been super sick this week. As you know, it started with Nixi and invariably moved on to Saf. They're both still really sick and we expect it to be at least another week before we see any real improvement. So, we cancelled both girl's programming and just took it easy.

One of the interesting things about Saf is that whenever she gets sick, her autism features tend to worsen. There is a great deal of interesting research on kiddos with autism (ASD) having weak immune responses in combination with GI issues that tend to exacerbate their ASD symptoms. This certainly would seem to be the case with our Saf. Its hard, you're dealing with a sick kid who's tired and not feeling well........throw ASD into the mix and you have a downright brittle little person.

We first started using the term "brittle" to describe Saf after her private psychologist used the term to describe her. She's by no means a fragile kid. She's always going at life with do or die gusto...but she's brittle. Any small crack can quickly turn into a stress fracture that's hard to recover from. Sick or not, that's how Saf rolls. We spend the better part of each day trying to see where the cracks are and trying to avoid anything in the environment that might strain it. Its a lot of scanning the environment, "Is there a step she could trip on?", "Is that person behind us going to try to say hi to us?", "Is her snack bag unzipped?", "Are we missing any of her frogs?". Constant vigilance, and yet, it generally seems to blow up in our faces at one point or another during any given day.

It's really hard to watch your kid struggle so much. I asked Mike the other night if there was one thing he wished he could do with Saf, what would it be. I told him I'd like to take her to an ice cream parlor, get her an ice cream, have her actually eat it, and be excited, knowing it was a special treat. She'd smile at me and say, "oh, thank you mommy" and she'd be so happy. Mike thought about it and said he'd like for her to be able to wake up in the morning and just feel the joy of being a kid. He said life's too rough when you get older and she's missing the part where its just easy and good.

You have no idea what an adult world our child lives in. Saf's world is fraught with anxiety, literal fear, panic, and sometimes terror. Is she a happy kid, yes, to the extent that she can be. That's what makes her amazing. I'd buckle, and have, under a lot less than that little girl goes through. Because her world is so out of her control, she is bound by all of these rituals...her attempts to have some say or control over her environment, super common and part of the diagnostic criteria of ASD's. Its unbelievable the number of self-imposed rules she lives by. When one of those rules is broken, stress is put on the ever=present cracks. Throughout the day...more stress....more stress...BOOM! It is an absolute testament to Saf's character that she is able to recover from such catastrophic fractures, and she does. Once she has reclaimed a level of peace, we're all left standing in the rubble. She moves in and out of these spaces at the flick of a switch...we are often not so quick to recover. We're working on that. All in all, I'm glad I have the kid who melts down and re-engages. Its not at all uncommon for kids with ASD's to become so overwhelmed by the world that they just turn in to themselves and quite interacting with the world. The roller coaster of up's and down's is mind blowing, but I guess I'd rather be on a roller coaster than a tram.

This is the great lead in to Easter. Its been a rough day, not of lot of happy patches. I hung a birthday banner for Mike, and so it began. Saf walked down the hall this morning, looked up, and it was all downhill after that. Something new and unexpected in her environment. We are on the heels of getting the RV Friday, and that being REALLY fun! Both girls LOVE it! We even had our dinner, pizza, in it Saturday evening. Even with all the fun, the RV is something new and unknown...a major Saf stressor. So, put it all together and add a few plastic Easter eggs and a stuffed singing bunny.......KABOOM! So, we just held on and rode out the storm. We did Nixi's Easter basket with her while Saf was sleeping. She loved it. We'll see what tomorrow brings.

Look forward to updated you next week, this is pretty fun! Be thinking of our BIG girl, Saf, on Friday as she turns 3! Happy birthday Saf! Have a great week all!

Lots of Love
Sarah

Nixi likes her green egg....check out that giggle....


Saf coming down from a meltdown...she had been trying to dress herself...something her motor dyspraxia will not allow her to do...and she was frustrated, embarrassed, and overwhelmed because I had to ultimately step in and dress her....this is the tail end of it, and a pretty typical morning for us...note, this is a very loud clip...


Saf stepping into her new RV for the first time....


Nixi says, "tails don't taste as good as they look"...