The special needs birthday party, the date night

Hudson celebrated his fourth birthday last Saturday with a birthday party at Jamtown in Lake City.  Huge shout out to Mr. John who gave an awesome music class to about six or seven autistic kids plus only one or two typically developing kids in the mix.  We sang songs, learned new songs, banged on drums, shook our shakers, and rumbled our clave sticks on the carpet, and for the most part everyone stayed chill, able to follow along.  Many parents commented on his great demeanor with the kids.  We've been going to music class there for a while now and it was Ben's idea to have a birthday party there, since then there would be a structured activity for kids and parents to do and we wouldn't have to worry about structuring a whole party ourselves.  We served cake and ice cream after, and all the details were taken care of by Mr. John.  Down to the napkins and cups, and a parachute to lay on the floor so everyone could sit and let their crumbs fall without worrying about the rug.

H gets ready to blow out four candles on his cake.  Preschool buddies look on.

All in all we are so proud of our little guy, even though he took a long time to warm up to his own party.  He was incredibly shy, but we could tell he wasn't overly anxious because he wasn't getting violent or angry, just mute and antisocial for the first fifteen minutes or so.  Once there was a task for him to do, like pass out some instruments, he was okay.  He just needed to know exactly what to do, and have a mission.  Doesn't sound too far off my own social behavior - I'm way more comfortable in a party if there's something for me to do and I don't have to put all my attention purely on socializing.

Later that night, Ben and I got to to out to see the Carmonas at Cafe Solstice on the Ave, at their regular monthly show.  There was a small audience that night, probably because it was pouring out, so we got to chat with them a lot.  It was nice because both because we don't often get to go on dates, and also because we are both feeling more momentum behind our relationship to flamenco over the past several months.  Going out to see the local shows feels like a good way to get it back in the system, and to at least keep on acquaintance level with the people around us.  Ana Montes, the dancer who is the perennial "special guest" for their shows, even came and talked to us as though we were all friends, but we really hardly know her.  We just know of each other, so it's okay to just get past the formalities.  They asked me up to do some rumba at the end and I got painfully nervous even just doing that, oddly enough.  But that's why I was grateful for the chance - every minute in front of an audience is important to practice mindfulness and presence.  At least Ana was nice enough to tell me I did a good job after.  But even now, days later, I groan thinking about it - ego reminding me I have a need to impress, and I will just breathe through it and kindly thank the ego and let it go on its way.

We came home and saw my mom still awake working on her computer but she reported that Hudson went to sleep without any fuss and without any company in his room after the light was out.  Amazing what he's capable of doing when truly necessary.  He begs for us to hold his hand, or cuddle him, until he's asleep.  Such a habit that I stopped remembering it was purely behavioral.  Of course it is.  He can do all kinds of things, when stretched.  He's going to keep amazing us, I'm pretty certain.  I'm grateful for all the learning and reflecting opportunities this weekend provided.

Your own path, your own time

Not a recent photo, but the dance is always current...

I am still not sure how much capacity I have for diligence and drive in my own pursuits right now, even though little H just turned four, and desperate to be independent.  I would like to dive in to dance and say I´ll devote every spare moment.  I have the karmic energy, maybe not the physical energy.  But a big part of me also just wants to take it easy, not expect too much, not expect to drop everything and return to dance after basically taking a year off, and taking several years off from performing.  Isn´t it enough to find some groundedness in this crazy life that has been handed me, isn´t it enough to seek serenity and do whatever makes me happy in the moment, even if it´s planting rows of carrots in the garden instead of practicing my turns and upper body technique?  I don´t yet have an answer.  I don´t want to feel guilty for watching DIY home improvement and design videos online.  I also don´t want to feel guilty for harboring that secret dream to drop everything and dance and live in abject poverty.  I am not expecting answers.  But I´m saying this is where my mind goes.  This is the nature of the artsy mama I guess.

I spent most of midwinter break decorating the garage with the upholstered insulation panels I mentioned in a previous post, getting really good at the staple gun and the liquid nails with the caulking gun.  And I kept wondering when I would consider myself "done" and ready to start using the space for dancing.  The floor was in there.  Wasn´t that enough?  Shouldn´t I drop everything and dance?  No, I guess not.  It needs to look good, and feel good, before I´ll be comfortable being myself and stretching my abilities.  There is always a balance to be struck in each day. 

What is most important today?  What´s the next step?  What can I do now?  It doesn´t have to be all at once.  It doesn´t have to be right now.  Next year I will drop everything and dance.  And it will be okay.  And in the meantime I will care for my son the way he needs to be cared for, and I will care for myself the way I need, and I will slowly work my way back to a place where I feel confident and completely immersed in art.

IEP, Garage transformation, new dreams for Spring

Spring is coming.  The gigantic cherry tree in our yard is full of tiny pink blossoms that are cotton-candy thick, blocking our view of... everything.  Our patio is planted with seeds of all kinds, in boxes, in containers, in hanging pockets, and I have my fingers crossed.  Things will happen.

First stages of studio creation:  Hudson helps paint the walls.

The garage is almost done - I've been slowly transforming it from the drop-off station for all our extras after we moved in, to a usable dance space for practice that will not feel dark and dingy.  I have the floor pretty well set up:  Foam tiles and MDF board on top of that.  There are insulation foam boards decorated with fabric adorning the walls and the garage door (without fabric), and there is a free mirror I got from someone off craigslist leaning against the wall.  Whenever anyone remodels their bathroom, they give away the old mirror!  Seems like one shows up on the free list every 48 hours on craigslist.  Inspired, I decided we'd take down our own bathroom mirror and use that to have a bigger reflective area, and buy a smaller framed mirror for the bathroom.  Okay, all details aside, it's turning out to be a pretty functional space, and I'm "done" enough with the setup to start using it for practice.

It might change my life.  I've been trying to slow down and not rush anything, but I feel a steady push leading me back in the direction of flamenco after dancing very little for about a year.  I thought perhaps I'd get back into classical music.  I thought I could push myself back into poetry.  And this is scary to say, because I hate sounding definitive about anything, but what I am naturally drawn to explore and learn more about and what gets my heart pumping just thinking about it, is flamenco.  It's scary because I don't know if I'll do it as "well" as I want, I fear that I will come up against the same barriers of time and childcare that felt so insurmountable before, and I'll feel insufficient.  But my slower mentality is telling me it will be ok, don't get ahead of myself.  The important thing is to dance when I can find time, find videos online because it's fun, and keep myself healthy and ready to go for the times when I can really dive in, like Spring Break.  Things will happen.

And this morning we had an IEP meeting for H at preschool, which lasted almost 2 hours.  We learned that he is apparently quite the little dancer and athlete at school, though we don't see much of it at home.  We learned so much more.  The actual IEP document is 15 pages long and details his present levels of skill in social, communicative, pre-academic, and other areas.  And it lays out specific goals to reach in each area for the next school year.  It was such a joy to hear so much about what he's doing at school, and to hear about what they think he can do.  To start actively playing with peers, to initiate conversation, to independently follow multi-step instructions, it made me feel giggly just imagining him doing all this.  So, needless to say my energy is super high today, I'm pumped on all the possibilities, and I haven't really sat down to do any concrete planning for classes the rest of this week.  Now that I've gotten some of it out, perhaps I can decide what exactly we'll practice in Spanish class.  Wish me luck.

Can I have yogurt and granola please, mama?

So much progress.  He speaks in sentences.  He speaks spontaneously.  He opens the fridge and brings me the juice.  He gets the granola out of the cupboard.  He wants to do so many things himself.  His fingernails are finally growing back!  (He used to chew them down to literally nothing, just a thin line of something like a fingernail protruding from his cuticle, with unprotected flesh where his nails used to cover.)   He has playdates with friends, and takes turns at the park.  He'll have a week of daily meltdowns, but then he'll have two weeks of actually accepting the fact that a broken cookie does not go back together, and he can still eat the two separate pieces.  It's amazing. And then he'll melt down again, but still.

Helping in the kitchen is the latest greatest thing!

And as parents we are learning to stay calm.  We have a thermometer of emotions that he loves looking at on the wall, and he even loves making different faces with us to match the thermometer.  We remind ourselves to stay in the green and not get worked up to the orange, too.  We have the books "When my Worries Get Too Big" and "A Boy and a Bear", both of which he loves to read even if he doesn't quite understand the depths of their principles yet.  We ignore his "bad" behavior and try to remember to thank and praise him for just doing normal, good stuff that we might otherwise forget about.  As a teacher I also find myself in the classroom more and more willing to praise the forgetful student for finally bringing their textbook, even if a part of my brain is still thinking, "thanks for finally doing the bare minimum!"  But I know it's important that their efforts get recognized and appreciated.

I am meditating most days, I have set up our garage as a dance studio, and I am writing a page of journaling a few times a week (though I'd like to say every day, that's definitely not happening right now!).  Taking care of myself and keeping myself calm and serene have become the big goals, rather than desperately finding time to myself in the day to "accomplish" other things.  The accomplishment is serenity in itself.  The dancing helps me get there, so does the intentional daily mindfulness.  But the goal is not yet the dancing, the choreographing, etc, it's just using the dancing to feel good. 

There still may be huge deficits in cognition, executive functioning, and self-regulation, but there is so much change in communication and social interaction.  We will be celebrating four years in just two weeks, and I can't wait to keep tracking what his next big change will be.

Getting to Autism

In the recent Seattle Magazine article about grappling with an autism identity, the reader comments showed dissatisfaction with the limited portrayal of autism found in the article's content.  It's true.  The article profiled one Aspberger adult and included other snippets of information about autism that as a whole can't come close to presenting an accurate image of autism. 

That accurate, whole image is almost impossible to capture.  It certainly isn't going to be captured in a mainstream magazine aimed at generic readers who don't already have a driven interest in the topic.  We certainly can't blame the article or the magazine for being what they are. And while I'm fascinated by the meaning of words and their heft, what's most important is how we live our days, whether we say we are parents of an autistic child, a child with autism, a special child, or, just "Hudson's mom." 

Hence, a blog.  And I'm not the only one blogging, lord knows.  I'm excited to continue to capture details about the adventures of raising my son in two languages, while managing a career and a vibrant (I hope) life in the arts as well.  AND I'm excited to know that I'm capturing a story of autism at the same time. Reading other individual stories is one of the best ways to get to know this world of autism.

We had denial - I hear my own voice in my head telling one of H's pediatricians "We know he's different, and we suspect he might be on the spectrum, but I don't know that it's important yet to get an actual diagnosis..." and I hear my mother-in-law's voice telling me later that summer "I'll be happy to pay for evaluations, because I think it's time to do it", and I had relief when the first results came back showing clear developmental delays.  My suspicion that my parenting experience was somehow vastly different from others' was now validated.  Now, a year later, we do have an official diagnosis, a specialized preschool, speech therapy through Children's Hospital, and countless meetings about insurance and services.  But the most frequent comment in a quiet moment at home?  "I'm excited about the future" my husband or I are sure to say to the other.

Hudson is sweet, caring, and cuddly.  He works hard at school to manage his anxiety about other kids.  He's starting to smile at school and won't hide in public.  He's more and more chatty at home every day.  He also hits and pushes and screams and demands and can be violently unpredictable.  But I know we have it easy.  He does great at the hair salon with his favorite hairdresser, and even got his hair washed last time (haircuts are such a common  blog topic for autistic kids!).  He clutched his bin of toys and let his hair be dried with a dryer.  The kid next to him started screaming because his mom was obligating him to have his hair buzzed with electric clippers, and H totally tensed up and tried to turn his body away.  I couldn't blame him, it was painful to watch.  The clipped kid was not autistic as far as I could tell (but then probably no one could tell H was autistic that day either!) but it was a raw scene.  H, however, got his balloon at the end and skipped out happily.  I was amazed.  After reading so many horror stories, and knowing that he's more likely to act out around me than around Abuela, who usually takes him, I was braced for a storm, not for skipping out to watch the fountain toting a bouncy blue balloon.

I work every day to balance what this all means in my life as a parent.  Do I tell everyone?  Do I tell no one?  Do I make sure everyone knows how hard my life is?  Do I make sure I only say positive things in public?  Somewhere in between.  And all of the above.  I put my foot in my mouth daily.  I learn something new daily.  No day is the same as the day before, exponentially more true here than for other parents of "typical" preschoolers, and my challenge is how to explain it and capture it. I know a lot more about autism than I knew a year ago, but I'm still not an expert.  I can only be an expert in Hudson at this point, and even that is a challenge!