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!

Noticing

For a while when I lived in New York City I kept a journal of small things I noticed that made me happy.  Writing it down is good and I'm thinking it would be nice to start again.  Journals and sketchbooks were my friends, my company when I was single.  How can I get back into the habit now? Do I want it just for myself, or start a family tradition....?

Inclusion, Opportunity and Basketball

Inclusion, Opportunity and Basketball

I never thought I would say that I could write a novel about sports, but I think I almost could. Because it’s not just about sports.   It’s about the growth that happens by being part of a team.  It’s about it being fun, and good exercise, and eventually being about competition. And what I can write is also about inclusion in recreational activities and how this changes lives.

March 21 is World Down Syndrome Awareness Day and I am going to write about my son, who happens to have been born with an extra chromosome. Liam discovered that he loved basketball when we joined the YMCA and we would leave him in the Kids Gym while we did a workout or a class.  He would shoot the ball for the entire hour he was in there and in kindergarten it was the only thing he liked to do during recess.   At age 5 he didn’t interact with the other kids shooting hoops but did his own thing.  

First year- kinder team 

In January of that year we signed him up for basketball through the YMCA and he had once a week practice and games on Saturdays for 8 weeks.  As luck would have it, most kids on his team were from his school and one sweet boy from his class.  He had lots of fun and let me say, watching kindergarten basketball is a blast.  The referees find the perfect balance of keeping them following the rules (loosely) and letting a few things slide.   There’s a little traveling, but if they try to run from one end of the court to the other just holding the ball without dribbling (which they do sometimes at 5), then the ref calls that out.   And sometimes they blow the whistle for a time out to tie someone’s shoe for them.  As a result of this experience, Liam started to play with other kid more during recess. He passed, he dribbled more.

The next year Liam was in first grade and then the teams are a first/second grade combo.   This gave us reason to wonder if he would do well with that mixed age group.   Liam was a young first grader, on top of his delays due to that extra chromosome.  We imagined second graders would be faster, and more competitive.  So we asked if he could try that team and the kinder one as well.   So he tried both, even doing a game with each team and we decided to keep him in the kinder group.   Not he smoothest start doing it this way, plus, none of the kids were from Pacheco so she didn’t know anyone.  By the last 3 weeks of the 8, Liam simply didn’t want to participate anymore.  If it was a game we respected this, but did stay to watch. 

And I wondered, is this the end of his inclusion in sports with typical peers? This left me feeling sad.  He is included in school.  But I know how sports slowly get more and more competitive not just for the kids but the parents too.   The kids move faster and faster and if there is something Liam is teaching us all, and especially me, his mom, it’s that our world is very fast paced, but it is OK to move slower.

This year Liam is repeating first grade in school and when basketball season was rolling around I called the Y and explained why it was important that Liam be on a team with others from his school.   They said they would accommodate this as well as they could and overall they were trying to have more teams with common classmates.  

What a difference.   2019 was awesome and I’ll tell you why. Most of the kids on the team this year were form Pacheco and one was a boy from his same class.  This boy, I’ll just call him D, was a sweet kid and also an amazing player who could have carried the team on his own.   While most of the seven year olds still wanted the ball to themselves, they would pass to him because he could score.  

So…. seven year olds on the court.   Some teams we saw had some great teamwork, and others didn’t.  Whenever one of Liam’s teammates had the ball, most of the others would immediately start calling (shouting?) out, “Me! Me!  Pass the ball to me!!!”   This is partly developmental for the age, and maybe a small part not having enough focus on passing and team work during practices.  Now, Liam is not a very competitive kid.  At home he loves when anyone scores a point or wins at a board game.  So during a game, whenever he had a chance to have the ball, he would dribble for about three seconds (“Liam! Pass to me!”) and then he would pass the ball.  Liam and D were the two kids who would run down the court and wait near the basket while the others fight over who dribbled the ball downcourt.  I think they call this the center, yes?  They could have made a great team, and so cute too since they’re just the same size, the shortest players on the team.  But no one ever passed to Liam, even with the coaches shouting out “Pass to Liam!”, and him being the only one open.  That is…until the LAST GAME of the season.  

He loves it

I’ve told this story so many times in the last four days.  The coach and assistant coach (who are dad’s and volunteers) really emphasized to the kids that they had to give everyone a chance, they HAD to pass the damn ball!  (My language, not theirs).  And Liam, my Liam.  For the first time ALL season he had the opportunity to shoot.  D passed him the ball several times and he made three shots.  On the last attempt, he scored!   He did it and made it look so easy peasy.   I witnessed it and also got it on video.  There were big cheers.  A dad nearby in the stands stood up to give me a high five.  

Afterwards the coach told me that he actually got all choked up when it happened.   This was what he wanted to see happen all season.   He said he might volunteer again next year.   I said that all the kids played amazingly well that last game, there was improvement across the board.  I’m projecting here, but I’d like to think that that last game, and Liam’s shot helped him see what is possible.  

Liam may move little slower than all the other kids but boy, all he needed was an opportunity!   Recreational activities for kids are very much divided between opportunities for neurotypical kids and a few designated for special needs.   What I want to emphasize is that I don’t want more activities for special needs, I want more authentic, integrated inclusion.   Having Liam playing basketball with other seven year olds at the YMCA will have long lasting effects on the parents, on him, and on his teammates.  Those other players are the future teachers and business leaders of our community and they need to see, from early childhood, that there is a place for everyone on the court. 

Third year - first/second combo "Pelicans"

For the Love of Basketball

Liam LOVES basketball. It began when we became members of the YMCA and he would go with his sister to the Kids Gym while Pedro and I took classes.   Them he got a portable hoop for Christmas and it lived in our living room.  On the kindergarten playground it's the only thing he would do, shoot hoops.
We signed him up last year for the kinder team through the YMCA, and as luck would have it, 5 of the 7 kids on the team were all from Pacheco!  He had practices on Fridays and games on Saturdays.  I was so curious to know how a kinder game would go and they were fun.  One referee in particular was just awesome: he knew just the right balance of calling out excessive traveling (some kids just grabbed the ball hugging it and ran to the other end of the court) and letting little things slide. 
And we appreciated the times where he held off the other players for just a second, to give Liam a chance to shoot, or dribble just a few seconds longer.
And we saw the difference in how Liam played during recess at school.   He no longer just shot, but interacted more with the other kids.  Passing, defending, etc.  His teacher noticed that a boy on his team and also in his same class who hadn't interacted with Liam much now talked with him during lunch sometimes.  As a parent, this is what tugs at our heart strings.   This is why we value inclusion so much.

Mostly, Liam had fun.

So now Liam is in first grade, and he's a young first grader with his summer birthday.  We looked forward to signing up again this year but found out that it was now a first/second grade combo team.  My first thought was that there was too much of a developmental range their for Liam to fit in.  By second grade, I thought, they are getting competitive.  And fast.  And maybe too aggressive. I asked the YMCA permission to let him try out two teams, the 1st/2nd and the kinder one.  After the first week's practice I thought they were both all right but knew it was the game that would decide it for us.  

Sure enough, it did not seem to be the right fit.  He rolled on the floor on purpose.  He got the ball and when everyone was calling out that it was time to pass, he froze, with all this noise coming at him.  And then he passed to a boy in his kinder class, but on the other team.  There are a lot of rules to remember in basketball, and it is a fast moving game!

So we will stick with the kinder team.  As I said, we want him to enjoy it.  But I can't help but wonder, how will it be next year?  Will he be ready for the next age group? At what point will he just not be able to keep up with his peers?  Will I resolve my conflicting feelings about Special Olympics? And I can't help but think way forward to high school.  Will he be a "team helper", filling up water bottles for other players?  Will we know the best ways to support him and help him to do whatever it is that makes him happy? How will it all play out? I hear about young people with DS who are aware enough of their (dis)ability to understand they can't quite keep up with typical peers and feel frustrated by this.  Will that be him?

I've started reading a book called The Game of My Life about a high school student with autism who is the team manager of his school's basketball team and everything leading up to and around the last four minutes of the varsity game when he is invited out onto the court to help finish up the game and scores numerous shots.   He has a high school who loves him and cheer thunderously in the stands.  And most importantly, he is thrilled.  This is what I want for Liam: acceptance for his unique strengths, real friendships, and his happiness.

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