Mexico, Febrero 2016

Inside the aviary

Later we'll swim down there

The happy first 5 minutes

Lupe swimming in an underground river!

Muy merecido tequila

The eggs are hatching!

LAX, waiting so patiently

Primos

Actors in the Xcaret show

Beach at Tulum

Her Mayan God, Itzamna!

Iguanas everywhere

Eating galletas for breakfast in Abuelitas tienda

The Pope's here in Chiapas and he flew over the house in helicopter

"Lupita" restaurant- we went twice

Chichen Itza

Taller de Lenateros

How to make recycled paper

La Catedral de San Cristobal de las Casas

Como moler cacao

Buying cacao at the Museum

Lucia's learning a lot

Greatgrandmother Lupe with bisnietos

Bisabuela Lupe

Summertime, and the living is easy

Summer.
Bare feet and few plans.

foozball!

We have a couple of camps planned for July, but right now?  We wake up relaxed, with nowhere to rush to.  After breakfast we go down and open up the garage.  Usually one of the other three families in our shared driveway already has their garage open.

They scooter right on over with their bare feet.  And all the kids start playing.  The neighborhood kids.   I have been organizing the garage, trying especially to get my art supplies in order.   So while I do that, sorting boxes and such, the kids spend time making "stuff" at the table with string, glue, cardboard. Cutting and hole punching cards and signs for their store.  A big tv out of a box with remote.   They scoot into the box with their dirty feet sticking out, while one changes the "channels", the other intermittently sings and tells the weather.
After a while they go off and bike or scooter around.  Throw balls for the dogs.

Paper, scissors, glue and string

 Back and forth, a mix of ages, playing in the carefree way that summer should be.  I am so happy.

tricycles and popsicles 

And then the other evening was the first fireworks of the season, shot off from the baseball stadium that we can see from our house.  Some neighbors came over, and while we sat on the balcony, sipping our beverages, waiting for the last inning the kids started a band and marched around the house, up and down the stairs.  I dubbed them the Humbert Honeydrops.  And my parents and siblings came over, and the fireworks were superb.  Other neighbors were out, in front of their houses.  The teenagers were filming everything on their cellphones.  A couple of cars were parked down by the tracks, vintage cars, looking like they were about to start a drag race.
Lest I forget, we also spent our first Monday hanging out at a creek.  We picked up a couple of friends and there we went, from kinder to eight grade and a few in between.   Pants rolled up.  Looking for tadpoles.  We took sketchbooks and magnifying glasses.
So there you have it, summer so far.   All good.
(and we're going to Yosemite next week for the first time!)

me myself and i: a list

Sometimes I like to make a list.   To remind myself of something.  So I want to remember, right now, the most amazing and diverse experiences I've had in my 41 years.   How fortunate I am.

I've swam beneath a waterfall in the Mexican jungle.
I've swam near a sea turtle in Hawaii.
With a dolphin in the Carribean.
I've swam naked in the Mediterranean.

I've posed for a photo naked on the Queensborough Bridge, NYC.  And in Chinatown.
I've danced to reggae in Mexico, salsa in Guatemala and swing at jazz clubs in New York.
I've acted on a stage in Scotland.
Exhibited a photo at the Metropolitan Museum of Art.

I have found jobs in other countries.
I have marched on Washington.

Painted murals with kids in Guatemala, pinhole photography with incarcerated youth in Chiapas, Mexico.
Taught in an inner city junior high.
Painted with the children of migrant farmworkers in California.

I know something about painting, developing film and printing pictures, printmaking, writing and self-publishing.

Gotten lost on a train in Germany.  Touched the Berlin Wall.
Seen Run DMC in Belgium, the Fugees in Ireland.
I have been inside the Sistene Chapel, and marveled at the feet of David.  Painted on the canals of Venice and picked grapes in a village.
I have been atop the Eiffel Tower and the World Trade Center.  Seen the Guatemalan jungle from the top of a Mayan pyramid.

I've married outside my culture, perfected (almost) another language.  I have found love.
I've given birth to two little human beings.
I have learned what it is to advocate for another person.   I have learned about disability.

I have found great satisfaction from counseling others through jobs that support families.

I have attended events and thrown parties but have also done things on my own when I wanted to.  Dancing in NYC or traveling in Mexico.  I am comfortable with others and by myself. I create opportunities.
I create community.
I am living life to the fullest.

Om mane padme home

6:30 am, and it's a Saturday! But Liam woke up and i found him at the foot of his bed near the wall, seemed wide awake but i managed to tuck him back in.   I didn't think I'd really get back to sleep so i came down to make my coffee and write.   Like i was doing for a while in the Tassajara house last spring and summer.  For so long i was imagining this house we're in now, our house.  I was picturing walking down stairs (they're a novelty still!) and wondering which corner would be my space for early morning alone time.
Oh....there goes the train (I still love the sound).
It was a hard week.  Sometimes i feel guilty having a hard week because there is so much good in my life right now, so much to be grateful for.   See? There I go again being hard on myself.
I was frustrated at Liam's downturn in potty training, twas a week of billions of changed pairs of wet underwear.  No smiley faces on his school potty chart.  I was having a week where i was feeling tired of being his mom.   I mean, feeling that being his mom is tiring. A little feeling sorry for myself moment.  And it's true.  The constant advocating, for his education and his health...  My mom suggested i just let the school deal with Liam's education, even stay out of it completely, give myself a little break.  She might be right.   but it's hard to step back when for the four years of his life i have done everything, been on top of it all.
And always researching.  "The role of chromosomes is to code for proteins. Because patients with DS have extra chromosome material, they experience genetic overexpression of specific amino acids and polypeptides. One of the proteins that is overexpressed in DS is copper-zinc superoxide dismutase type 1 (SOD-1).¹¹ The genes coding for this important antioxidant are found on chromosome 21 (21q21-22.3) in an area called the DS critical region. Case reports of partial trisomy 21 support the hypothesis that the genes in this region are involved in the phenotype of DS.^12-14 Moreover, SOD-1 activity has been found to be increased by about 50% in all tissues of patients with DS.^1"
Oh my, i studied art and education, and my brain is most certainly not wired to start learning how to think like a scientific researcher.   But I'm trying.

And FOMO.  Fear of missing out.  I'm not sure if my family invented that one or not.   But I got it.  I have lots of mixed feelings about how much involvement I want to give my kid's school. I applied for a very part time job there.   I didn't get it.  That knocked me down harder than i thought it would.  But I have to keep telling myself it's for a reason.   I have a lot going on.  And I am a creative soul that also needs alone time.   Perhaps I need a bit of help managing my time, but not filling it with more commitments.  My mom reminded me what a big year this last one was, with buying our house among other things.  Sara, allow yourself to keep settling in, enjoy it.  I keep telling myself I want to volunteer more, but something is holding me back and I can't figure out what it is.
Deep breath.
In my neighborhood is a little yoga studio.  I checked the schedule and Friday mornings there is a half priced community class.  This is what I need.   Focus on calming the mind and body.   I need this.   And it helps when I can do it affordably.   So before work I walked the two blocks through my new neighborhood to this sweet little studio.  The streets were wet but it wasn't cold.  There were the clank clank sounds of work happening in the little warehouses that populate my new 'hood.  And inside the studio, I looked out on a little garden, and San Luis mountain behind it.   Ah...

Now I need to make the effort to have this be part of my routine.  It is important.  I am  important.  Let me say that again, so I can hear myself.   So that when I find the ability to take care of myself, I will be a better mother and wife.   I am important. 

Casa, dulce casa

October
The kids are asleep and Pedro is at work.  I am sitting in bed with the computer and trying to get inspired to write by reading other blogs and rereading my own.  Remembering just a few months ago when I started the habit (for a few weeks at least), of getting up early, making my coffee and writing. I haven't felt like writing for a while but I love it when I do, so I'm starting now.....I have so much to share.  So much to process.
We bought a house.  WE ARE HOMEOWNERS!!  I still can't quite believe it.  It almost feels as if we are renting again, trying not to scuff the brand new paint or track rice onto the brand new carpet.  Getting used to the sounds of garage doors opening, a gurgling of pipes somewhere in the shared walls.
And the train.  I had wondered if it would be hard to get used to, like when I lived under the L train in Queens, but no.  It is a lovely rumble that passes right in front of our windows more often than I had thought.   How long will we all still run to the window to see it go by, before it becomes common place?
It is the fulfillment of a dream, one that we never imagined possible in our happy, yet ungodly expensive town.  But here we are, with grateful hearts. For the past couple of years we have been working with a lender, realtor and the Housing Authority to buy into a new planned development called Moylan Terrace.  There have been ups and downs, and delays.  Times where it seemed hard to believe that it was going to happen.  Escrow, 30 days in the contract, ended up being 7 weeks.   And in the middle of that we were notified we no longer qualified.  I.  Broke.  Down.  Sobbing in front of the preschool at drop off.   Only to discover, half an hour later when I had calmed down,  that there had been a mistake.  I rushed to fix it and it all worked out.
We got our keys at 4 pm on a Friday, the kids were sent to the grandparents to stay the night and we went to buy paint.  We HAD to personalize it immediately, to fulfill our dream of living in a casa de colores.  With limited time, we decided to just do a couple of accent walls.  We went out to dinner to celebrate, Pedro and I.  Giddy.
So much waiting, and then it all happened in a rush.  I had imagined a posed photo taken by our realtor of us with the key for the first time, and a bottle of bubbly.  As it turned out, we arrived first and the house was open!
And the next day was insane.  We only had one day off together to make the move happen. Got the U-Haul rented, packed, unpacked and returned in 6 hours.  Damn! Thanks to Bryan, Dad, Pat and Paula who helped make that happen.
Have I mentioned that the house is THREE STORIES?  Those were some sore calf muscles we had the next day.
It was an exciting weekend, with other trucks and other families moving in.   Thrilled to know that my kids will have other kids nearby. I'm imagining movie nights at rotating houses.  But I'm getting ahead of myself a bit.  (I created a Moylan Terrace Facebook page back in June, 3 months before we were even in escrow.  Is that weird?)
I am so eager to invite friends over, but we have no couch, and I want them not just to see our house, but to see our home.  Which is why I want to first get the furniture, the pictures hung on the walls.  For it to burst with Arias McGrath energy.

For now, we are enjoying the feel of new, clean carpet, and a wide open living room with room to leap and crawl.  And the first rain, heard on the windows.  Even as we spend week two in our new house with sick kids.   And the first week we had an L.A. trip and then a two day conference for me.  And then Halloween and Dia de los Muertos.  I managed, miraculously, to find the box with my glue gun (and extra glue sticks!) to make Lupe's costume.  I couldn't imagine disappointing her since i have always made her costume.  Liam's however was borrowed form a friend.   Good lord, I can;t do it all!  It was perfect though, as his pizza costume had similar colors in felt as Lupe's!  And, she won the costume contest at the Mission!
Non- stop.
As much as I want it to be all decorated now, I have to realize that it is going to take a while. And it's going to be fun!

Update December
We got the couch.  I am sitting on it, next to the Christmas tree, and in front of our electric fireplace with mantel.  We still need to put more pictures on the wall, and shelves to house the books which are still in boxes in the garage.  But we are settling in.   We've had family over for dinner, and playdates with kids running up and down the stairs squealing.  We know most of our neighbor's names.  The kids have played ball in the shared driveway with the other kids and Pedro has put up lights.  The first stain on the carpet and scuffs on the wall.  My mom has settled in to her little sleeping nook under the stairs when she comes to spend the night.  Feeling more and more like home.  Hearts bursting.   So much to be thankful for.

Adios Mama, I got this

September.
The little guy is about to start his second week of preschool.  And you know what?  He's got this.
It's funny.  I worked hard to get him there.  Seems so obvious and simple, but I wanted him to go to our neighborhood school where his sister is.   Duh.   But he happens to have some delays because of that pesky extra chromosome and the "professionals" were required to recommend a Special Day Class at another school because the teacher has special training and, as one pointed out to me, slowly, with every word pronounced: "But Liam has delays across.  All. Developmental.  Areas."
Anyway, 4 IEPs later and he IS at his neighborhood school!  And we thought we'd maybe need to be there every day for the first month or so.  Not necessarily stuck to his side (that would be detrimental), but helping, aiding, coaxing, observing from the other side of the room.

Lupe helps Liam find his name tag

The first day was super fun.  I was SO excited!  Second day we started as usual.  Kids walk in, greet teacher, wash hands.  Find their name on the table, and take it to go practice writing the letters, then to the floor to read a book. And Liam was a bit whiny.  And he didn't want to participate.  Finally I asked him, "Creo que voy por un cafe y regreso mas tarde, esta bien?"  I might go for a coffee and come back later, is that ok?  "Si" he responds... Ok then.  So I left.

Looking for his name

I left, and I sobbed the three blocks back to my house.  The dawning realization that: I had to let go.  I may be his biggest advocate and his "therapist" for the last 4 years (we have used very few local services, instead homeschooling with the guidance of our neurodevelopment program NACD).  But maybe it's time to send him out into the world so to speak.  Let some others, who we trust, teach him. Let him learn from the other kids, and just let go of the control a little bit.  It's hard.  I have been so highly attentive to his every move, to the development that inches forward at times, and
sometimes jumps.

December.  

Picture Day!

Liam's been in preschool 3 months now.  He's tested his boundaries a bit.   Thee was the day he pulled all the kleenex out of the box and then went to the bathroom and pulled all the toilet paper off the roll and stuck it in the toilet.  There was the day he tried to escape three times from the classroom.   But much to my relief, these haven't been things he does every day, but just once, to test the waters i suppose.  Most kids are writing their names now and Liam has some work to do there still.  But.... he has written every letter of his name at different times, though not al together. And in other "academic"areas he is thriving (it is ridiculous to say "academic" for a preschool, but that's how it is described).  He absolutely LOVES his letters and letter sounds.  Instead of just learning the ABC song, they learn the sounds in context, and with a hand/arm movement to go along. So for example, "Anna ardilla, a, a, a" and the movement is a nut being cracked on your palm.   Or "Imelda iguana, i, i, i" and the movement is your two fingers scurrying up your arm.  He is right on track with the rest of the kids- he knows this and loves it!
He started the year watching other kids  a lot or playing next to them.   Now he is playing with them. Lots more interaction.  And, he has a best friend!  He is a bit obsessive, yes, but he made the friend all on his own.   The kid is not the younger sibling of one of Lupe's friends.  He's Liam's friend.  And he waits for him in the mornings, won't go to the bathroom to wash his hands, or to the table to write his name until his amigo has arrived.
The Program Specialist thought of getting adaptive pedals for the tricycles to help Liam ride, but he can do it now. The trikes are big and heavy, but he has mastered them.   He is not obsessing about balls during recess as we thought he might, but plays with many things.
He understand and follows routines.
Potty training...well, it's hit or miss.
So we are just thrilled.  He is "accessing the curriculum" as they say.  Holding his own.
And the preschool is a great little community.   Pedro and I are very happy with the "vibe".  The other kids have embraced Liam, some of them "protect" him a bit- they just see him as a bit younger, thus the protectiveness they feel.   The parents look out for him, guiding him when needed.
The future is bright.

I want all parents to know that there are many reasons to insist on inclusion for our kids with their typical peers in the LRE, or Least Restrictive Environment.  For those who don't have kids with special needs or IEPs, this simply means, where would your child go to school if they didn't have "special needs"? Your neighborhood school? The same school their older siblings went to? Yep.   Except in some circumstances, this is where our kids belong.  Learning alongside their "typical" peers (the good and the bad!  "typical" kids aren't perfect!).  Good for Liam.  Good for his classmates who will grow up knowing Liam and see him as just one of the kids.

As the t-shirt says, "The best is yet to come"

Man, who can resist that smile!

Summer 2015

We've done a fair bit.   Cookie and lemonade sales, lupe started ballet.  

Rain makes applesauce

It is Sunday morning.   The only thing better than waking up to write and drinking my coffee is waking up to write and drink my coffee while listening to the RAIN!!!  Hallelujah! Thunder and lightening since last night.   It was epic.  P and I had just gotten onto bed when we heard the first rumblings, and saw the flashes through the closed shades. I was wide awake.   We went outside to move some things into the garage.   I danced in the driveway as the sprinkles started to fall on my head.

The driveway chalk drawings will be washed clean for next weeks Sticky Manos art class.  Mayan hieroglyphs erased.

I imagine myself at a writers retreat in the North Carolina mountains, or on the porch of a Durham home.   Hot summer morning but wet outside.  In fact, that sounds awesome.  Most rainy mornings in California are cold (not today).   The rain with warmth is an east coast feeling.   Or Central America.  I love it.  I just realized I want to go to a writers retreat.   That sounds amazing.  I read about a retreat like that on Kelle Hampton’s blog.   I want to do it.  

The kids are standing in front of the front screen door and watching the weather.   Epic!  Lupe is explaining what thunder and lightening are to Liam.  They had been at the table coloring.  Lupe is taking charge, getting materials and letting me sit in bed and write.

It’s so awesome that this isn’t just a sprinkle but a real storm.   

My Facebook feed is full of people talking about the weather.  Rejoicing. Excited.  Stories of kids waking up at 1 am and parents giggling under the covers with them as they listen to the rumbles.  This shit is exciting for us Californians!  

Lupe came to tell me about the leaves of the tomato plant.She says they were curled up with a pool of water in them.  My first thought is faerie water slides.  “That’s what I was thinking!” she says.  We still see the magic.  Magic is so often in the small spots.  

Liam copies her saying “You know what.  water.  raining.   whee! Lupe…..” and more I don’t understand.  So much he wants to say.  He's not just saying words, naming his environment, but really talking.  I wonder if it is like someone who stutters wanting to get their thoughts out smoothly, without the interruption of the stutter.
We went to Ama and Apa's house and dance outside, Liam got naked.  Maybe more grown ups should dance naked in the rain.  And get our feet muddy. Dance to Uptown Funk while we jump in puddles.

Mambo Italiano

She's a dancer! After only four weeks of ballet Lupe got to perform on stage! I'm so proud of her.  And I'm excited to see how far this goes.  In the past I've let Lupe "dabble" in things.  She's done ballet before, soccer, gymnastics, etc, but then I let her stop if she's not so into it.  But at 7 years old I think it's time to stick with something for a while and have the opportunity to see that hard work really does pay off, that time and practice really do bring improvement.

So it's plies for the next year!

Backstage door.  Like a real performer!  She cried when I dropped her off for the rehearsal the morning of the show- because she had to be led back by a teacher- no parents allowed.  But she walked out an hour and a half later smiling!

Breastfeeding my son with an extra chromosome

I was asked if I would participate in a local documentary for the Birth and Baby Resource Center about breastfeeding a baby with special needs.  I don't know if I'll be able to make it but I want to think about what I'd say.
My firstborn was challenging.  I was new and unsure and she was born via cesarean and I was recovering.  It took two, no three months to start improving and for me to feel like it was working.  I supplemented and pumped and did everything I could.  Then we successfully breastfed for almost two years.
I thought with number two it would be easy peasy.  Especially since I had also worked for two years as a breast feeding peer counselor for the WIC program.  Right?
Wrong. Oh so wrong.
Much to our surprise he was born with an extra chromosome, otherwise known as Down syndrome.  We knew nothing about that but apparently low muscle tone is a big issue.  So I had a baby with low muscle tone, "floppy" was sometimes used to describe him, plus he had to stay two weeks in the NICU for help with oxygen and breathing.   Imagine!
He had tubes in his nose and things taped to his chest and finger.   But I was SO determined!  God dammit I was going to nurse my baby!
He had a hard time but I kept trying.   I had a new baby in the hospital and a toddler at home.   I would stay in the hospital as long as I could, then was finally convinced to go home and rest.  I'd wake up every two hours at night to pump for a baby who was not in the room with me.  I'd experienced low milk supply with my daughter and knew this would be challenging.  That's whenI started this blog.  Pumping and drinking protein smoothies and giving little bottles, even two ounces of milk, for my husband to drive over to the hospital.
On our wedding anniversary, six days after he was born, my husband brought the pump out to the living room- whoo, living it up!  We watched Glee and I saw Becky for the first time.  Becky, the teen with Down syndrome.  I'd never known anyone with DS, and never seen someone represented in media.  I cried with so many mixed feelings.
In the end, I had success with Liam sooner than with my first, (and we bf for 2.5 years) , despite these crazy challenges.  I think two things helped a lot.
1.  Crazy ass DETERMINATION.  Nothing was going to stop me until my son was nursing successfully.
2.  Going to a weekly BF group at a local lactation consultants office and tracking progress. Seeing that every week he was gaining weight and getting a little more milk out of me each time.  I had to see tangible progress.   And with that my confidence increased.

Confidence is so much of it.  I knew how important it was especially for this new baby of mine because he needed the immune support breast milk offers and the low muscle tone needed breast-feeding to help with muscle tone in the mouth.   I thought about how much benefit I could give him by nursing him and I was determined like nothing else ever before in my life

Dear New Friends

Dear New Friends,
I never imagined this part of a life with Down syndrome: being super excited to meet another family of a child with DS.   But it's true, finding out that a family has had a baby, or a new family has moved to the area is like welcoming a family to our "tribe", a tribe I never imagined I'd be  part of but it's pretty cool!
I could have talked your ears off for hours yesterday.   And so much more I want to say. First and foremost:  be hopeful!  There is so much out there for our kids these days.  I can't wait to find out what Liam's passions are and to help him go for gold with whatever he wants.  And now that I say that, I realize that this is what I'd say for my daughter as well.  It's what we do for our kids.  We help them to reach their potential.
Cling to the good stories, believe in the good stuff you hear.  Surround yourself with that.

And don't forget that it's never too late. It's not just bodies always growing, but minds too.  That being said, some things are good to start young.
There are several different areas we have focused on and i have researched:
1.  Neurodevelopment.  This is our NACD program and I think it's the best thing we have done, bar none.  (More on this below)
2.  Diet changes, no gluten or dairy- people with DS are more sensitive to gluten and dairy and while I may not see hives or diarrhea when Liam eats these things, they are good for his long term health.  With Liam I have to think about the long term.  (the sensitivities did however show up on a blood test, so I know these foods are not great for him)
3.  Supplementation.  The first ones were probiotics, DHA and a multi vitamin specific to DS called Nutrivene D.  Since then I have researched many more things and tried to implement them, though I am somewhat sporadic so I don't know if they are as effective as they could be.  (Curcumin, Ginko Bilbao, etc)
4.  Advocacy.  Taking charge of your child's development.  NO ONE is as invested as  you are.   Instead of always looking for the experts, remember YOU are the expert.  Of course you need input and guidance, and hopefully you find some good "experts" who believe in your child, but remember, it comes down to your love and dedication.  Your advocacy.  Advocacy is going to be a big part of this journey.  I research and have found amazing websites, blogs and forums.   Rather than take questions to my pediatrician, I tend to take requests. (Hey Dr M, let's check thyroid, iron, atlanto axial instability,  hearing, etc).  IEP team? Oh, don't forget we are the most important members! (That's a whole other blog post)

You have to learn to trust your gut and do things that you feel are right.  Others might disagree sometimes.  Thats's ok.  If you are wondering about trying a neurodevelopment program, you should just go for it and give it a whirl.  If it's not going to break the bank.   If you don't, you might always wonder what would have happened if you had tried it.
And I think it comes down to priorities also.  What is important right now?  Our thoughts have been over the last few years that our priority is our kids.   The younger years create the opportunity for more time together, there is no full school day.   It is time that goes by fast and it is a time of exponential growth.
Time and money?   I think those things can be figured out.
Knowing that we are doing the best we can for our son who is going to face many challenges in life? Knowing that we are giving him the base, the foundation to help him succeed, that is important.  The best learning comes from home, and with Liam's unique differences, we feel that we have the training and knowledge to feel like the experts in his life (that is not to say we don't need help, we do).

I have come to this place where I am today as a mom, slowly.   Don't think this all came to me at once, that i am so on top of it.   It's important to do one thing at a time.  Otherwise it is most definitely overwhelming.  So choose one thing, if you wish, and start.   I'm here if you have questions or want support.  Oh yeah, the other thing I've learned is that my best support and info has come from other moms.   We rock!
And remember- be hopeful!