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.
2.  Diet changes- 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.  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.

You have to learn to trust your gut and do things that you feel are right.  Others might disagree sometimes.  That'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.  Whatever you decide though is just fine.  Remember you can just do your best, and then accept that and be ok.
Seek out other parents and take the opportunity to make new acquaintances with those you might not have otherwise met, save this unique bond. that extra chromosome that brings you together.

Summer of 8

Here is a photo of my Lupe ready for 80's Day at school.  Will anyone get how cool it is she has a Keith Haring sweatshirt tied around her waist?  

It's May 15, and she will be 8 in two weeks.  She is sweet and sassy.  Showing some attitude sometimes that we are not liking very much.  And I wonder what she will be like as a  teen.   I hope so desperately that we will have a good relationship.  

This girl of mine. So uniquely herself.  I feel like "8" is the age that kids are often in story books.  Or movies.   The age of growing independence and a little awareness of the world.
This summer of eight has been one of firsts for Lupe.  I think we can safely say this is the summer she learned to swim.   The swimming we did back in Mexico boosted her confidence a bit (dolphins...um, yeah!).  She has been  couple of times with her friend M whose mom's a swim teacher.   We joined the YMCA and get to use the pool- we try to go more often then we have in other summers.  We have a couple of older friends, like her beloved C, who have helped.   And her Apa is taking her swimming on Saturdays with a private lesson at his gym, then a hot chocolate at a cafe afterwards.
Last weekend we went to a birthday party at the beach and she boogie boarded for the first time.  Her confidence is soaring.
Lupe also took her first theatre camp and thus, her first performance on a stage (asides from ballet last summer).  She was so poised.  And I was so proud.  She loves it and wants to continue.  Taking after mom!

And last night?   Her first punk rock show!   Didn't see that one coming.  I had heard of "Ladyfest" for a while: all day long shows on three stages, predominantly, if not excessively female.  All ages, and two blocks from our house!  The description read: 

"7 in 10 girls believe that they are not good enough or don't measure up in some way. Ladyfest II on Saturday August 6th, 2016 is a resounding response shining a light on female empowerment & helping change that cultural norm. 

All proceeds will be donated to MUSE Arts Education, a San Luis Obispo non-profit that awards musical scholarships and/or musical instruments to people suffering from financial hardships or physical disabilities.

- All Ages, All Day, Open to Everyone

- 3 Stages

- 25 Bands

- Artists, food & vendors celebrating women in the arts!

So after a long day of other fun stuff, a Makers Market at the artist collective down the street, and the aforementioned boogie boarding, I took Lupe at quarter to eight, around the corner to the Grange Hall.  There were a few other kids, mostly the kids of some of the musicians (including a friend from high school).  We were listening, sitting by the Kim Gordon stage and she took out her ear plugs to tell me, "I think I like them".  Awesome!

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!)