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"...
No comments:
Post a Comment