#ChefLiam

 Liam has always wanted to do what his Papa does, but with Pedro starting a taco catering business (Corazon 805 Tacos) and Liam's affection for Chencho, Pedro's business partner, his desire to be a chef has risen to a new level! 

We are starting to make cooking videos at home because of this new found love, and because...cooking! It covers EVERYTHING you could want to teach a  child: reading and writing recipes and shopping lists, measuring (math, duh), chemistry, following directions, independence, the 5 senses, and the list  goes on. 

A few weeks ago we had no childcare help on a Friday afternoon and we thought, maybe Liam would like to go help at the brewery where Pedro sells tacos every Friday... I asked Liam and he closed his Chromebook with lightening speed, and grabbed his apron and chef hat (thanks for those Susi!)

When I showed up 3 hours later, thinking it was a long time and he'd be really ready to go, he was following his papa to the tables giving out napkins and then standing behind the order counter with his arms crossed like a boss.   He gave me just a touch of cool dude attitude, as if to say, "Don't worry about me mom, I'm doing just fine here at work.  I got this!"

 

Liam and Ryan

August 2020 

As most of you parents can relate, my young child is somehow naturally adept at navigating tech devices, and Liam's preference is Youtube.  He goes through stages of what he likes to watch, starting a while ago with music videos from the movie Sing, then coloring videos from the same movie.  Somehow Liam discovered a kid YouTuber.  His name is Ryan, he's about 6 years old I'm guessing and he makes videos with his parents: Ryan'sToy Review, Ryan's World, etc.  He was so obsessed that my first thoughts were, "Oh this is silly, no more of these videos".  But wait... is Liam watching another kid play so different than  me watching someone cook on TV or get a makeover?

So, because we are still in a pandemic and it's hard, Liam (like so many) has been watching too much tv.  And I realized something interesting... perhaps "Ryan" was actually GOOD for Liam.  Was he learning some skills? Liam started initiating play and conversations that he hadn't before.

"Mama, let's play hide and seek!"

"A challenge. Who win, mommy or daddy?"

"Do you like spaghetti? Do you like cookies? Do you like spaghetti with cookies?"

He set up pillows between the two bedrooms and then jumped on them pretending the ground was hot lava.

Liam also went in the kitchen on his pwn a couple of times to make Mom pancakes and write a note saying "I love you Mami", because he saw Ryan do this. 

I'll try and not think that Ryan is the only friend Liam is seeing during the pandemic, and try to view it as him learning play and social skills.  

OK, it's now January 2021

Liam dressed as Ryan for Halloween. Too bad he had recently had his first Pandemic haircut, because before the cut he had the same shaggy, long hair as his favorite You Tube sensation!

The Ryan kid I think is a millionaire and the business has created a million and one things cheaply made from plastic that you can buy at Target or Walmart.  But I let Liam use his own money to buy a "Mystery Egg".  It made him happy. And for Christmas, he got a Ryan figure and a watch.  Let him enjoy his obsession, but now I am NOT buying any more stuff!  

Liam still loves watching the videos but I am not sure if he is still "learning" from them. Maybe.   He certainly was very brave in the swimming pool when we went on a family weekend in October (yes, Ryan is in the pool a lot).

Maybe though.... if a child with a learning disability can lean a lot from these fun videos, maybe we should become YouTubers as well!  Maybe we should turn this around and start being the CREATORS of the content!  Lupe is getting skilled using her iphone...  I honesty think this warrants some thought...

Speech & Language

August 2020 

There is  A LOT to say on this topic but what is on my mind right now is this...

It's Sunday morning and I woke up early, before everyone else and came downstairs to make coffee. With my morning cup made, I settled on the couch to do some of this blog writing.  After a time, Liam came downstairs. He's so sweet in the morning, always comes to hug me, or let me kiss and cuddle him.  We're having a hot spell, and Liam is in his new Star Wars pajamas perfect for this heat.  He has "Covid hair", meaning it is LONG!  

The printer wasn't connecting well, so I couldn't print a coloring page for him so he asked me to draw one.  I drew "Johnny" and then he asked to set up a coloring video to guide him with the colors. But what I heard was not very clear, or perhaps I wasn't paying much attention. So I said, "I'm sorry sweetie I didn't understand you, can you say that again?" 

His eyes immediately got wet and he started to say something again, but in this sensitive, soft spoken and sad voice.  And it hit me, I think he is feeling strong emotions related to his speech not being understood sometimes.  This breaks my heart.  If there is something I don't want to happen, it's for his self esteem to be be affected by his challenges and abilities.  

January 2021

I've had some issues with the blog and have a lot of unfinished posts, and I am just now getting back into it...

So...speech.  I spend so much time thinking about Liam's speech because of my own fears I think. Fears that not being understood will affect his self esteem, fears that it will be harder to make friends, or he will have fewer opportunities.  The 3 of su have gotten so used to interpreting for Liam, in a way.  As we talk with others he will say something and I think we wonder if others can understand him so we will repeat him in a more or less natural way: "Yes, we went hiking on the mountain today." after he's just basically said the same thing.

I can hear him in class virtually, doing all of third grade with a teacher he is not seeing in person, but getting to know through Zoom. I am amazed and impressed at his willingness to participate and answer questions, as well as his teachers ability to get to know him and overall come across as warm and fun.  Sometimes I can tell she didn't catch what he said, but that happens here with his own family as well. 

First Day of School 2020 #virtual #covid #etc

 

Today was the first day of school. 2020 Covid style. Distance Learning. It’s 10 pm and the house is calm now. It sure didn’t feel that way at times this morning! For some reason Lupe kept getting booted off first period and had to log on over and over, no one could find the second period link, the Spanish history teacher spoke English. Zoom crashed nationwide. Yep, nationwide. Transitions to Google classroom.

It took Liam and I half an hour to log on. Other families were trickling on over the first hour and a half due to many technical issues.

Lupe was busy in group chats with friends to figure out the issues and I was doing the same with my parents friends. At one point I just had to laugh at the absurdity. 

Liam was a rockstar. He volunteered so many times to raise his hand and answer questions. He followed directions and was engaged. Well, until after lunch when independent work didn’t seem to be his first choice.

All in all it was challenging, but successful in the end and I am exhausted.  Everyone is exhausted today.

Fellow Parents, I hear you. I see you. I feel ya.  Teachers... thank you. #lupeandliam #school2020

After it was all done, Lupe got to go meet three friends for some outside time scootering and Liam was so eager to want to do the same thing, I knew I had to have an enticing alternative.  So we parked a few blocks from Big Sky Cafe and scootered there.  Papa served us outside at their parklet.  I drank a glass of white wine, Liam had orange juice.   A hummus plate and grilled brussel sprouts.  I whispered to Liam, "It feels like we are on vacation!".  "Yeah!" he squealed.

Zooming with friends

August 2020. The time without friends has been different for Lupe and Liam. Overall I am so, so glad that they are doing ok.  It helps that we now see the grandparents, tios and cousins.  I think it also helps that  I work from home.   I am not away 8 hours. They are so respectful of not bothering me while I work on the first floor but they know if they have a question they can come down and ask me.   I can come at any time to take a peek at what they are doing, and we eat lunch together.   Or I may take my 15 minute break and walk outside to get the mail with them.  I have heard of a family I know where the 12 year old cries herself to sleep at night she misses her friends so much.
Lupe got a phone for her birthday.   I might have delayed that longer if not for the quarantine.   She has been responsible in her work, chores, and helping with Liam.   We now can confidently leave them at home while we go to the store.   And she can text or email her friends.  I am totally ok with that now.

Liam doesn't talk about his friends from school.  If I ask, he will say yes, he misses them, and then mention our friend, and his para educator, Claudia in the same breath.   Friendship is a little more complicated for Liam.  Meaning, he doesn't have the same language skills as others his age, so a lot of the camaraderie is through physical activity and proximity (I know this might be a little more true for young boys in general). Sports has been his social connection for years now as well as the classroom.
He did a Zoom call with a few friends for his birthday which was mostly influenced by wanting his special day to look exactly as Lupe's had a month prior.
Recently I had the idea of doing a Zoom dance party with a friend he's known his whole life but hasn't gone to school with.  They are both dancers by nature.
It was pretty darn cute.  They took turns choosing songs.  When Cielo chose a Taylor Swift song Liam didn't know as well, he grabbed his guitarra and sat and played while she danced.

I help run a support group for parents of teens and adults with disabilities for my work.  I often hear about individuals who don't have a social circle or any friends.   I can't express how HARD this is to hear.  And I wonder... what did those parents do, or not do? And i think, as it relates to my son, is there any way to tell if the friendships will come more naturally in his inclusive school environment with typical peers, or with other children with special needs? Am I doing him a disservice by not developing friendships or having opportunities to socialize with other children with special needs, who might have speech delays, or other differences?  

I imagined I would have to make extra efforts as a mom to host playdates and be proactive with the friendships he has developed on his own at school (which I am so happy he has done on his own!), but now we are social distancing and at home and that summer plan went out the door!

Our family knows how FUN Liam is to be with. He does great impersonations (of characters from his fave movie Sing), he dances really well, is good at board games, and so much more.  But we have spent enough time with him to know that.

I just really hope this *&%! pandemic goes away so we can be social again.

Painting in heels

I’d rather have roses on my table than diamonds on my neck. Emma Goldman

I just wrote about the beauty of nature and how good it has felt to go outside and all this time we now spend walking and exploring.  Love roses, but diamonds too.  Let me talk about my new, red heels.   I got a gift card for my birthday and knew back in March that I would use it to buy shoes.  Then the pandemic hit and I thought it would be silly to buy heels, basic heels that I had wanted for a while, that would go with jeans and dress up an outfit.  I let a couple of  months go by, with some hikes outside, but mostly at home.  Then I decided I deserved to do this for myself. Why not?

And I may not be going out much, but I have been wearing them with my painting overalls when I go work in the garage. And sometimes I put on red lipstick too. 

 

I have been wanting to do more painting and two things have helped. Well, a few.  The kids are older and can entertain themselves.  I've decided to set up a table in the garage and keep my projects out there, no having to clean up and put things away.   We still have a pandemic, and the kids will be distance learning all Fall, so we may as well keep both cars out in the parking lot and use our garage.  I chose some pints of paint from the hardware store (and my mom was so supportive to buy them for me). They are exterior house paints in bright colors and the quality is better than the inexpensive tubes of acrylic I would buy at Michael's. When I lived in Guatemala and painted murals I would buy house paint and then use it for my own projects.  It's about time I remembered how great they are.

I have a project that has been brewing in my head for years now, ideas half formed but not acted on apart from a few sketches.    The ideas are inspired by what I have learned and felt, and what I still don't now, about being Liam's mom and the biology behind Down syndrome.   That's all I'll say for now (it;s still a secret). 

So I have been starting by finishing up some paintings that I have started over the years and never managed to complete.

Some of these projects have been inspired by the taco business Pedro and Chencho have started, and I have involved myself in.  Their logo for Corazon 805 Tacos came from a painting I started over two yeas ago and I finally completed the painting and I'm very happy with it. I'd like to think it draws the customers in. As far as logos go though, we have a friend helping us work on a new one.  There was some thought that not all appreciated the image of the anatomical heart as much as we did.  

"If I create from the heart, nearly everything works, if from the head, almost nothing." March Chagall.

This quote from Chagall sums up the artistic struggles I have been having for years now.  I have felt dissatisfied for a while with everything I have started and I knew, before finding this quote, that it was because i was living in my head too much when creating.  I tend to do this anyway.  Small missteps in conversation with someone? I go over and over it in my head until I've made it something bigger that it probably was. Wondering if someone likes me? Yep, still do that, like a teenager.   Making a decision about something important? Ah, this takes forever. So this is one aspect to my artistic frustration. The inspiration is not truly flowing from my true self, but getting fuddled up with the non stop conversations in my head.

Add to that the addiction of technology and the ease with which we (by we I mean I in this case) go to our phones to look up images or scroll without being able to stop.  Guilty.  Wanting to add sone flowers to something... go outside and look? Sketch some ideas? Search my books? No. Google them.  And it just is so hard to stop.

Now, another thing I am realizing, and I am trying to give myself credit for this and stop berating myself so much... is that I have used my creative energies in ways that involve technology and have enjoyed it. Example: For two years I have taught myself more about social media in order to promote the taco business and create a brand.   Capturing what they do in images, using words to tell stories.  I have loved this and found it to be more creative than I previously thought.  I have always loved documentary photography and narrative art.  Murals in San Fransisco and documenting my immigrant/gentrifying Lower East Side street in New York.  This is what I love.  So we have started following others on Instagram and watching the shows on Netflix that do more than just show the food, they tell the story of the people who make the food.  I am so inspired by this.   Anthropology and art. The human experience.

I will keep going.  Paint in the garage with all my projects spread out. 

Accept that the Instagram posts are creative outlets. Try to go by instinct and follow my heart and get the hell  out of my head.  Go have a beer in my paint splattered overalls and red heels.

August 2020. Reflections on hiking

It's August 2.  It's been four and a half months since Covid became part of everyone's lives.  We're doing pretty well.  I still think about how it affects our own family and how it is on a community, national and global level.   Our "president" takes things to a new level of horrible in the shit show that is his presidency on a daily basis.  But let me talk about something different in this post.

Let me share....
the millions of photos I've taken while on walks with the kids
Lupe becoming an adolescent
Liam's interest in cooking and other things
The pride I feel that I get up 4 days a week and run a mile before work.
Pedro's tacos
(There is a lot of good stuff happening in our life)

Our after dinner "adventure" walk

My camera role has more photos in the last 4 months than the previous 6.   So many are of the landscape of our immediate surroundings.  I was about to say, "and we haven't even gone anywhere!", but we have, we have gone to more beaches, hiked more hills...
Pedro is working a couple of night shifts.  I don't find myself very motivated to make anything complicated for dinner on these nights, so sometimes it is something simple like quesadillas, or boxed macaroni.   Sometimes Liam wants to make tacos, and puts on his chef hat and apron (that's a blog post of it's own). Recently, after dinner, I have felt kind of...in a funk.  Not enough joy.  Unsure of what to do. Listless. Looking forward to some alone time, but missing Pedro at the same time.

Pandemic analogy:
out of the dry and withered plants
some new life will grow,
thorns and all, but green, and alive

So I realized that being outside with the kids would make me feel better.  Most often we cross the tracks and do the short walk that is my morning mile run.  Up a small hill and then back on the bike path.  I have pointed out to Liam often enough when we are on an "adventure", that now he brings it up on his own.   I just love his voice when he says it, a simple joy that is hard to mimic. "Oooh mama, we're on an adventure!"  My mom and Bryan know the voice.
Then it's home to shower, get on pajamas, and either read or watch Netflix.  With Liam it is Shaun the Sheep, and he sometimes asks for Someone Feed Phil or another cooking show. (I'll talk about Lupe later and all the things we now watch together)

After dinner is the perfect time.  Thy sky is changing.  The air is cooling off.   We work off our dinner a bit.  The ultimate frisbee players have left the hillside.  We walk. We breathe.  I take a lot of pictures.
  
Lupe has a phone now so she can also be a hiking photographer with me and just recently I remembered that the grandparents gave Liam a camera also at Christmas that we hadn't used in a while.  Here's the thing... this quieter life we are leading now has opened so much time and space to introduce Liam to things that he sees us doing and wants to do too.  There is so much joy in this.

I don't get tired of this view. At this time of day I love to look at the contour of those mountain tops.

Below are photos of South Hills, so close by, just across Broad St.  We can see these hills from our house and from a distance they just look barren, and kind of a boring walk.  Or so I thought.  On an after dinner adventure, it was already 20 to eight but I decided we should see where the start of the trail is and just scope it out.  We've been back 3 time since.
   
I love our hills when they are stunningly green from rain and I love them when they are golden and dry.  I feel appreciation for every type of plant I see, thinking about the native landscape and each plants purpose in this place. The subtle change in colors and the patterns on the rocks.
 
"Nature is pleased with simplicity. And nature is no dummy." Isaac Newton

The earth laughs in flowers. Ralph Waldo Emerson
  

"Adopt the pace of nature. Her secret is patience." Ralph Waldo Emerson

I felt my lungs inflate with the onrush of scenery – air, mountains, trees, people. I thought, “This is what it is to be happy”. Sylvia Plath

I am reminded of why we have always written about the natural world.  Painted it.  Photographed it.  The air and the earth.  At certain times of day it speaks to your inner universe.  It heals.

"If we surrendered to earth’s intelligence we could rise up rooted, like trees." Rainer Maria Rilke

how do i *&%! go easy on myself?

Edit: This post was in draft form from about 6 weeks ago.   Things have gotten better.

I am having an internal crisis.  I am more and more aware how not beneficial it is to live so much inside my head, to constantly work, and rework conversations and decisions and worries. Im usually someone who likes to be a helper, a doer. Active.

I know how to teach.  I trained for this.  I have ideas.  I know how a flexible routine can be good for kids.  But I am flip flopping all day long on my thoughts about this.  It's hard too because I am not the one implementing it most days, but I created a rough idea for a schedule for the mornings at least.

Yesterday I did work with Liam in the morning with lots of breaks between activities, and after lunch I said it was his turn to use the Chrome book for ST Math.  He loves to use tech and even tough I usually have to remind him it is not for Sing videos, he's happy to just be on it.  But he wasn't into it, he kept signing himself out.  ....
My partner and I have different ideas about how to do things and I just don't know how we are going to manage and blend our styles for...who knows how long.
So I closed it all up, said "We're done", and went upstairs. I locked myself in the walk in closet and had myself a good cry.  I cried about family dynamics and my abilities as a teacher and mom. I cried about the larger world.
Finally I washed my face and came out, deciding I'd go for a run by myself.   Liam was in his room under his bunk bed playing with Barbies under a blanket. I crawled in with him and curled up there on the floor. He broke out a huge smile and said "This is fun!"  Yes, I said, it is.  Then he made me some food and we played.
And of course now I am berating myself for trying so hard to do ST math when what made him HAPPY was to play with his mom under the bed.


Reset.

I went for the run. Before we even started dinner I remembered Liam had been saying "Mom I want to make cookies for the neighbors. Not for us, just the neighbors."  Oh, this boy. I asked him to write out a list of ingredients.   Then I made an executive decision to leave out the ice and the pepper.
I also said that for this time, as generous and loving as his idea was, we could take a photo to post on the neighborhood Facebook page and eat the cookies ourselves.   It wasn't that hard to convince him.

 

In the media

Through my work at the family resource center i was contacted to talk about how distance learning, and saying at home is going for families who have children with special needs and IEPs. Here's the article:
https://www.newtimesslo.com/sanluisobispo/the-transition-to-distance-learning-brings-different-challenges-for-parents-and-teachers-of-children-with-special-needs/Content?oid=9651916

And then I also got to do a Story Time live on the First 5 SLO Facebook page!  It was super fun and Liam helped me out.   The embarrassing/funny/real life parenting moment is in the first 5 seconds.  Should I tell you? Or just let you see for yourself?

https://www.facebook.com/first5SLO/videos/603957720208880/  

Well, damn

Week 1: Well, these are some crazy ass times we are living in.  I am fluctuating between contentedness when my kids are not rushed in the morning, and have plenty of down time, and we are going for daily walks or runs together, and then...panic and anxiety.
I am worried about Liam's health, since when he gets sick it is always a little more serious and he is prone to respiratory issues.  Worried about my parents because they are technically of "that age".   Worried about our economic stability, Pedro is already out of work and we are trying to register in the overloaded unemployment online system.   Drowning what little savings we have.  Worried about our friends who are in the service industry and can't file for unemployment, they are losing work and then how do they pay rent? How do we do homeschool the right way? How long will this last?
By Wednesday I was stressed.  My throat was starting to hurt which usually means I am overtired or worked up emotionally.  I stayed off Facebook for a day and went for our first run as a family and felt better.

I was a resident of New York City during 9/11.   During that particular date I was in San Francisco, having just spent time visiting family.  It took a week for the flights to resume and when they did I got back as quickly as possible to my adopted city, the city that to this day lives inside me, that I call my favorite. And...I arrived on a plane half full. Circling towards La Guardia airport and I could still...see...the...smoke.  Rising from the site of the twin towers, a week later. I often feel that I have the most shoddy memory, forgetting parts of my earlier life. But this, I remember how it felt to be back in New York. And those first weeks back, sometimes when the wind shifted I could smell, all the way over in Brooklyn, the smell of burning.  And it was hard not to imagine what was burning. And everywhere, in parks and on sidewalks, were shrines with flowers and candles, and missing persons signs.  The fucking overwhelming sadness of it all. I will never forget what New York felt like, looked like, smelled like during that time.
And yet... there was such heartbreaking humanity and kindness.  It was palpable.  This huge city felt like a small community. Walking down the street people interacted more and just seemed kinder. People helped each other.

This time feels the same yet different, know what I mean? It's scarier because it's global.  It's scarier because we don't know when it will end.  Not knowing is so, so hard.

A Grateful Heart

Back in December, at the start of Christmas break, Liam was invited to a birthday party.  It was in Los Osos, and we didn't know if we would hang out at the house during the party or not, but it turns out it wasn't really a "parents hang out and chat while kids play" party, so Lupe and I went and had some mother-daughter time sharing a huge bowl of noodles at Kuma.
Liam had become friends with the birthday boy last year in first grade and his dad happens to be Lupe's sixth grade teacher.  So they were a family we don't know very well, but knew we cold trust. I mention this only because we haven't left Liam at a birthday party before. His diet is specific (vegetarian, gluten free etc) and he needs reminders t go to the bathroom, and to some his speech isn't always understandable.  Being the parent of a child with special needs often requires a lot of extra thought.  It is our "normal" to always be thinking of the unique way Liam interacts with the world.

When we came back at the end of the party, we saw 8 or so boys on, off and around a couch watching a movie.   Liam was in the same room, but off to the side, playing with a basketball.   He doesn't usually sit through a whole movie, and for a moment I was thinking about it being another marker of his "difference": Liam why aren't you doing what all the other kids are doing?
But then.... Then the dad comments as we are leaving that Liam was one of only two boys there that evening who said "thank you" for anything... And my heart swelled.  I felt proud of my boy.  But more importantly, it was yet another reminder that it is our differences that are important.  Our own unique abilities and interests that should be celebrated.  You'd think that this would be second nature to me by now, but as a human, I am imperfect.   I need reminders. 

Continuing on the theme of thankfulness, Liam reminds us daily to be grateful.  I would call us a spiritual family, definitely not religious.   Something that we have done, on occasion for years, is to say grace before dinner.  Lupe coined our standard "prayer", which is, "Thank you God for food, friends, farmers and family". 

Then we often go around the table and take turns saying something we are grateful for.  For the last year, Liam has taken over this important ritual.   Now we say grace before every meal.  Quick breakfasts before school, out at  restaurants.

Sometimes he recounts his day, thanking God for swim or dance.   Sometimes he lists the people most on his mind. Recently he has been keeping it sweet and simple:

"Thank you God for myself. Amen".

Is he trying to be funny? Is he super hungry and wanting to be quick? Simply self-confident? Whatever his thinking, we like it!

Go to #$*% influenza

Tuesday, 9:55 am

Liam has been hospitalized several times for respiratory illness so every time he gets a fever we worry. And worry. And worry.  If you know him, you know what a bubbly, energy filled guy he is.  Constantly wanting to shoot hoops, dance to Kidz Bop videos or be the first one up on a Sunday with full soccer gear on. So when he is listless or writhing in pain it is scary.
And it's difficult, oh so difficult as a mom, to juggle two worlds: that of traditional western medicine and local doctors who don't know a ton about the specifics of Down syndrome, and the holistic approach, where I am looked down on because the research for alternative, natural and genetic specific approaches is being pulled together by other advocate, warrior mamas.

Listen.  An extra chromosome changes a lot in a body.   Medicine can work overall for a people, but it is not one size fits all.  And guess what? Most drug trials don't include people with different genetic make up.

Pedro just took Lupe to school, a bit late- she slept in since we were at the ER until 11:30 pm last night.  She slept on the couch.   The flu is damn contagious and I don't want anyone else getting it.  Liam is up in my bed sleeping.  The ibuprofen helps.  Fevers need to "do their jobs" to kill the virus, but he also needs to rest and not be in pain, and feel ok enough to eat a little (mostly drink liquids I know).  At the ER, his temperature was going down because we had given ibuprofen just shy of 2 hours previously when they came in wanting to give Tylenol.   I asked, why? If he just took something that is slowly bringing it down? 'Because he still has a low grade fever' they responded.   I hate how tiring it is to be "that" mom to the professionals, but if I see him feeling a bit better, because the medicine I already gave him is starting to work, why are you wanting to pile on more?

This is all so exhausting.
Update: 7 days and Liam is on the mend.  Fever lasted on and off for 5 days, now a cough is the only thing Liam is still dealing with, and gaining his appetite back.

Claudia, a good friend, and Liam's aide at school brought by cards his classmates had made. It was clear they had talked about Liam and his interests.   Chewbaca and Johnny from the movie Sing feature prominently, as well as a lot of pictures of Liam playing basketball.

The Peanut Butter Falcon

A movie came out this week called The Peanut Butter Falcon and I went with Lupe to see it at the Downtown Cinema (too grown up for Liam, both plot line and a fair amount of cursing).  A mom of a 30 something woman with Down syndrome had emailed my work and suggested she'd love the wider DS community to know about it and fill the theatre so I emailed it out to our database. And I'm happy to say that it was pretty full that night. Spoiler alerts ahead, you are forewarned. 

Some articles have described the movie as a type of Huck Fin adventure. It is set in the South, and I talked with Lupe afterwards about how very different that part of the country is and some of the reasons why. What it made me think about is how we treat individuals with disabilities.

On the one hand we have the "caretaker" Eleanor from the home where Zack (the young man with DS) lives and she has set out to find him.  Zack escaped because as he says, he is not old, and doesn't want to live with old people, but rather, go to the wresting school of his hero  She truly cares for him, but she is a person paid to care for him. She feels affection for him and likes him, but.... she doesn't  believe he can be truly independent and care for himself. When she catches up with them she quickly asks if he has eaten, and what about his blood sugar level, and could he please step away from the edge of the raft so he doesn't fall in... and you can see him slump a little as he goes away from the edge and sits. Tyler, Zack's fellow "man on the lam", watches this exchange and accuses her of calling Zack a "retard". (jeez I hate even writing that).  She is shocked.  She says she would never call him that. But Tyler tells her that she is essentially calling him that through her actions of not believing in his ability not only to be independent, but to make mistakes because he is after all a person, Down syndrome or not.


Tyler, because of the circumstances of how they meet, is given the chance to simply get to know Zack as a person. He actually pushes and challenges Zack to try things. One of the best and telling examples of this is when Zack finally gets the opportunity to wrestle in a  match and sees it can get brutal and he could get hurt.  Watching this scene you can tell he is having second thoughts, he is scared.  And we're sitting in the theatre thinking...what will Tyler do in response? We would not be at all surprised if he says, "Don't worry buddy, you don't have to go through with it."  But no.  He tells him You've got this, you can do it.  And the scene unfolds.

I am already seeing in my life and in others I observe, that both family and professionals want to protect those with disabilities so they don't get hurt.  Pedro and I have done this with Liam.  We have been over protective. This is understandable, but we need reminders to let our kids just be themselves and take risks and try things.  Even if it doesn't always work out. 

We have a perfect example of this on our trip to Mexico this summer.  We traveled with friends whose 3 kids are 12 and over and a 14 year old cousin.  We were at Chiflon waterfall in Chiapas and did a strenuous hike up to the top and there was a zipline that crossed over the river. All the kids wanted to do it and we got tickets for the older ones and us two moms, but did not include Liam.  We assumed he was too young.  But there was no sign saying an age limitation. It was our assumption.   Part of it was thinking he wouldn't be able to pull the handbrake as he reached the other side.   So everyone went across and Liam stayed with his tia and papa.   But he got a sad look.  The corners of his mouth turned down. Alarmed, Pedro first asked if he was filling ok.  Nod.  And then, realizing, he asked if he wanted to zipline too.  Nod.   Then a smile.   "No miedo Papa! Macho!" I'm not scared Papa, macho! So of course, Pedro realized our mistaken assumptions and set Liam up to do what all the big kids were doing.  And he realized every detail was important.   Liam paid the 200 pesos himself to the cashier and signed his own name on the release form. He went harnessed with one of the young guys who worked the zipline, since he was kind of small and needed to be accompanied.    The joy we felt on the other side when we found out he was coming across was immense! And when he finished he loved it so much that a battle of the wills ensued (one I often have with my strong willed son) as he refused to leave the platform, wanting to do it again, even after I explained over and over that we were at the end of the line and we couldn't do it again from that end.

So remember, our kids with different abilities, they just want to do what other kids are doing.  We need to let them. We need to listen to them when they tell us what their dream is.  And as hard as it is, we need to let them make mistakes.  Even if they sometimes get hurt. Because the absolute best thing we can do for our kids is to teach and encourage independence. Sky's the limit I say. Soar Liam, soar!