I've been to Spain,

Safi turned 7,

the girls went to the beach for the first time,

Nixi turned 5,

 the Easter Bunny paid a visit to dad's, and we've survived it all so far!  We killed April!

The report from Mike was that the girls adored the Monterey Bay Aquarium, Nixi freaked on the beach because she was getting stuck in the sand (essentially the same thing that freaked her about the snow, her feet sinking in) but he found some things for her to do like build a sandcastle, and Safi absolutely loves the ocean.  Mike said she was flapping/happy hands the whole time and she didn't even lose it when a wave knocked both her and him down.  Total raging success!

Nixi's Chuck E Cheese party was overstimulating and overwhelming but all of our dance class friends came to show their love and there were more squeals of delight from Nix then the few screams of terror.  Again, raging success.

We've been struggling to get back to our routine and decompress from all of the fun and changes.  Safi had a few rough days at school, Nixi having random meltdowns...but all in all, I'm absolutely stunned and proud of how far we've all come.  Never in a million years would I have thought I would be able to leave the country for over a week, let alone at their current ages.  Major props to Mike for doing a great job with them and bottomless thank you's to Emily, Heather, the glue that keeps this crew together and the grease that keeps the wheels turning.  Our world has just expanded and grown so much in the past nearly year that's its mindblowing.  Its not been without growing pains, and there are more to come I am certain.  But it is unequivocal proof that we can do ANYTHING.  We will survive and THRIVE.  We are one badass bunch.

That said, its time for my annual  love letter to Safi...and my letter to Autism.  If you've been with us and this blog over time you know that I usually do a love letter to both girls...Nixi's is coming next month, as May is Mental Health Awareness month.

Dearest Safi of mine.  I cannot begin to tell you how very proud I am of you.  You are the bravest spirit I've ever known.  Every day you wake up to the barrage of sensory assaults the world has to offer and almost always brush them off with a slight nose crinkle or a laugh.  Even though its still difficult for you to be hugged, you back up to me or snuggle into my arm on the couch and you love.  You bound of the car each morning with a smile on your face whether you cried at home because you were nervous about going 5 minutes earlier or not.  And when I tell you to have a great day you always yell back as you're scurrying off, "Have a great day, mama!" without so much as a glance back.  You are NAILS!  Your enthusiasm for learning is endless, so much so that it can create difficulties for you when you have to skip a part of class to be pulled out for speech therapy or some other therapy.  You are proud.  You are a proud young woman living with autism and you know that, you know what it means, and YOU, more than anyone else, know that you have every right to be proud because your life isnt easy but you refuse to lead a life that is anything less than extraordinary.  Your pride continues to be your single most difficult and simultaneously admirable quality.  You don't want extra help, you want to know how to do everything perfectly right now, and you are grappling with the fact that no one is perfect.  You, my love, my heart...you are perfectly imperfect and that's what makes you unique, special, wonderful, and breathtaking.  My wish for you today and my wish for you always is that you be kind to yourself and that you allow others in so that they can be kind to you, too.  Its true, there are people in the world who are mean and cruel.  Again, something you know better than anyone else, but it is my hope that you will learn that a laugh, a glance, or even a tear can all be signs of absolute joy, adoration, and love from those who are simply just better for being around you....and they know it.  You are loved.  You are wonderful.  You are beautiful inside and out.  You are my daughter...and I love you more than the stars and the moon.

Love,
Mom

 Dear Autism, you've packed some punches this year.  You've forced my daughter go on psychotropic medication just to get to school each day.  You've given her this tremendous gift for learning at a pace that matches the speed of light, then cut her off at the knees as she tries so hard to navigate the social structure that houses that knowledge.  Always giving with one hand, taking with the other.  But this year we got you pegged.  We get it, we get it.  Sensory issues are worse when she's stressed.  Minutiae and routines rule the day when she's excited or nervous.  Socially, she's just not as sophisticated as her "peers" which damages friendships.  But what YOU don't have pegged is US.  You have no idea that a half hour or so after social blow outs Safi, of her own initiation, apologizes to her "peers" and has managed to eek out a few real friendships.  You have no idea that it is Safi who comforts her sister and helps her be brave when she is anxious, despite her own internal state.  You have no idea that every night before bed Safi gently and lovingly tucks each of her dogs in a blanket and gives them soft kisses on their foreheads with wishes of sweet dreams.  We know a whole hell of a lot more about you than you know about Safi, about us as a family.  I lovingly accept you in my daughter's and my family's life and I place caring but firm boundaries around you to bind you from defining who my daughter is as a person and who we are as a family.  I celebrate you and all that you mean to my daughter and my family this month, I curse you during others...but this year, in general, I give you a warm hug.  You're okay.  Safi's okay.  We're okay.  And with that I say, take care, see you in the morning, and don't screw with me or my crew or we'll have to put you in your place.

Love,
Sarah

Big gift for the big birthday girls...real deal bikes


Chuck E Cheese ticket blaster...potential disaster, pure bliss!

Happy Autism Awareness Month!  Skipped last week and will be on hiatus until after Easter because I'm heading to Spain for a little over a week.

Nixi's IEP was lousy.  Frankly, I don't even feel like talking about it.  Childhood Onset Schizophrenia is such an unknown and so uncommon that I couldn't and didn't expect a lot from her IEP team.  Was disappointed to see a lot of gaps in reporting of symptoms, though, other than blatant ones Nixi doesn't share her symptoms with school staff.  That's a HUGE problem and should be one of her IEP goals.  I was so kind of out of it and on auto pilot that I dropped the ball in a lot of ways during the meeting so will need to add some addendums.

Safi's birthday party went really well.  She had a blast and was an absolute princess.  It was a killer end to a great week that started off with World Autism Awareness day.  We dressed in blue, as did our amazing friends and Safi was so excited she ran into school without her bookbag and lunch sack.  I love that that day is so special to her, literally on par with her birthday.  She felt so special and so proud to be a person living with Autism.  That's when it hit me.  She's gotta feel that way every day, not just one day a year and I have to find a way to make that happen.  Clearly, its do-able....I just gotta do it.

We hit the mountains Sunday with Emily and crew to take another stab at going to the snow.  WE MADE IT!  That's about the extent of the success.  Literally within two minutes Nixi flipped out because her feet were sinking into the inches of fluffy, untouched snow..panicking and screaming there on out every time her foot sunk in snow...so, when she walked.  Follow that with Safi thinking that sledding should be just like TV, you sit on a sled and it moves, and it was a gnarly hour.  Why an hour?  Because Safi literally screamed at the top of her lungs in anger, frustration, and general angst for at least 50 min of that hour.  Then, I had to physically place her in the car where she proceeded to threaten to punch me in the face and go live somewhere else.  The moment we pulled away, meltdown stopped.  It was exactly as it was when Safi was a toddler and would get overstimulated at her various therapies or on outings....she'd fight me into the car then the minute the engine started she'd calm and almost instantly regulate.  Now, I knew keeping it mellow the day after the party was a good idea.  It was a spur of the moment plan to go to the snow and it seemed somewhat mellow because we were going somewhere private and it would just be us and Em's crew.  In retrospect...bad idea.  But I think I want to keep trying because one of these days it may just not be a bad idea and I'll never know if I don't push things here and there.  Nonetheless, a miserable but simultaneously triumphant day...we made it all the way to real snow with no vomit, Safi slid on a sled and felt pride for about 30 seconds, and Nixi made a "tiny snowball."  Exhausted.

I will write my love letters to Safi and to Autism at the end of the month....I'm gonna put my kids to bed and take a bath tonight!

Sarah