40

I'm 40!

Grocery shopping was fun today!

Most of the time we do grocery shopping as a whole family so that one of us can get the shopping done and one of us can pay attention to the kids meaning mostly Liam.  I don't often do the shopping on my own with the kids but when I do Liam  stays seated in the cart to make things easier. 

Today however....

First we went to the farmers market which is just a very tiny one on Sundays.  Liam helped carry things like the bag of kale. We went to a stand where the man said "Hola" to Liam.    Then Liam responded "Hola.   Como estas?"   Ha! So proud of my bilingual boy learning how to have conversations. 

Then we listened to the man playing guitar.  He finishes a song and Liam applauds with enthusiasm "Bravo!!" He says, then adds, "Let it go" making a request!

And shopping was a dream! Liam and lupe walked the whole time.  We kept Liam engaged talking to him and having him help choose things to put in the cart.   And we did this in two stores.  No sitting in the cart. Lupe was an awesome big sister. 

Poor little guy

Here's what I do when my poor little guy gets sick.  

We let the fever do it's job fighting off the sickness and tried to just keep him cool and comfortable.  Treating his cough is harder. 

He slept and slept and slept all night and most of the morning and when he woke up he was dehydrated and hungry.   I made him some hot brown rice with Chia seeds,apples and strawberries and hemp milk.  He's eaten three bowls and he wants to feed himself but his poor little hand is shaking from weakness.  

Then he gets some of his Nutrivene-D multivitamin in applesauce and then some vitamin D3, probiotics, echinacea and colloidal  silver.   

And of course some Breathe oil and Thieves.  

However, things took a turn for the worse. So we went to the pediatrician's office at 4:30 pm and they sent us to the ER so that they could do a chest x-ray and rule out pneumonia.  5 1/2 hours in the ER and he seemed to perk up after oxygen breathing treatment and then iv fluids. No pneumonia.  Blood work fine.  They sent us home.  After seeing police dragging people in to the ER and a woman screaming we were glad to go. 

He seemed better but the next day right before our follow-up appointment he spiked a pretty high fever again. So back to the hospital and after more studies and more breathing treatments determined that he had RSV.  The coughing continued and he was complaining about it hurting.  Antibiotics were started for a possible sinus infection.  We have stayed here two nights and he is breathing better.  Everyone has been really nice.  

Pedro and I have both taken a day off of work and Lupe has been staying with the grandparents and been picked up from school by friends. The kids miss each other.  

How GRATEFUL I am to have family here.  

Lupe's first grade class made pictures for Liam and sent him some toy cars to play with.  How amazing! Liam is loved in first grade.  

So sometimes hospitals and medicine are absolutely the best route. We have been struggling for so long with his on again off again congestionand raspy breathing.  It's been his only real health concern (And with Down syndrome there could have been a lot more problems)    We have tried diet changes and other things.   So when asthma was mentioned and the idea of flushing out his sinuses a lot more often and using an inhaler when we hear the wheeze, well, if this helps his overall respiratory health then we are grateful for some solutions.  But something is triggering this and that is what I'd like to find out.  

Parenting is damn hard work.  

He's better. 

Pre IEP evaluation hormonal rant

I love my family so much it hurts.  I really am grateful to be on this journey and to have become a person who has so much fucking respect for parents of children with special needs and for the truly open and caring professionals who are trying to help.  

But....

Sometimes I am just so fucking tired of it all.  I am tired of the assessments and seeing all the things that my three-year-old is not doing that others can.   I am tired of how much time it takes to learn new things.  I am tired of all the mental energy put in to researching and experimenting different things to help my child.  I am tired of the  negative thoughts I have when I hear parents complaining about the small things their typical child is or is not doing.  It is so hard to watch things that kids can learn so easily without a parents second thought when it takes so much effort on my part to teach my son to do the same thing. 

Sometimes I want to say screw all this worry I have but I can't. I can't because special needs or not I am a parent and we all do what we have to do for our children

So after the chance to do some errands by myself I took a quick hike on the way home.  Just 15 minutes.  And I went off the path and sat in the middle of a field of yellow flowers.  But I still felt gray. 

I tried to feel peaceful and look at the little ladybug hopping along the grass stems.    It helped just a little. I am feeling hormonal today and it was not the best day to watch my son being assessed and I will just have to live with that and feel what I feel. 

Little things that are BIG

Monday: Liam just said "mama help".  I have been prompting him to say "help please" for ages and he will repeat it when I have prompted him.  This was the first time he did it without any prompting from me.  What a useful thing to be able to communicate!

Tuesday: "good morning Lupe "  "mmm yummy mama". "thank you mama". unprompted

Wednesday: Liam offers me a cheerio and I say no thank you.  Then he laughs and says "Liam mouth, Boca".  My bilingual boy

Tuesday of another week:  "that one".   "Other side" 

He put a ball in my shirt and said "baby tummy".

Yesterday at the park he saw a cup on the ground and said "dirty".   This is a big one too because I don't think he has seen us picking up trash in public and throwing it away very often and he sometimes needs prompting him to throw things away.  It was a very good connection

He now brings me a book and says "read".   He had lots of favorites and says them by name.  

Liam probably has around 150 words or more that he can say.  But what I am seeing recently is him not just saying words or repeating me but actually using spoken language to communicate his needs.  THIS is important. 

Wait, and did I already mention that he says "thank you mama" spontaneously? That's just awesome for any three year old  I think. 

What do I want?

What to do I want for my kids in life?  

Aside from wanting liam to be happy and healthy, I want him to have friends and be loved. I want him to be able to go anywhere he wants and communicate with people and be understood. 

I want to do whatever I can now even at three years of age to help him be able to live as independently as possible when he's older. 

I want him to be interested in something and be passionate about it. I want to help fulfill his dreams however outlandish and impossible they may seem at the beginning. 

And for Lupe? Well pretty much the same actually. Liam may have an extra chromosome that affects many aspects of his life but really my kids are more alike than different.  They are both the children of Sara and Pedro.  And we want both of them to reach for the stars

Girl Scouts

I have to admit I had my doubts about the Girl Scout cookie selling. And a week before the official date of cookie selling season I saw many mom friends posting on Facebook to get everyone's orders in because ...the cookies were coming!!  So I did the same thing and had friends and family from out of town wanting to reserve cookies.  But then the day after receiving the cookies we set up a stand in front of the house and Lupe started on her homework as she called out her first tentative "cookies for sale!"  

And slowly the people started to come.  In three afterschool sessions Lupe had sold out of her 36 boxes. I started to go back on my online promises as we met college students who used to be Girl Scouts and the Cuban couple from up the street who heard Pedro speaking Spanish. 

And I realized that this was what it was all about.  Who was I to take away from Lupe's learning experience?  It's not a competition.  And it doesn't matter if you sell them all or not. 

What matters is a six year old girl learning to use her voice, meeting her neighbors and practicing her math while counting her money. 

Progressing and present

Last night after asking Lupe about her favorite part of the day I asked Liam.  He went "ahhhh...." so i thought i would ask him some specifics.  I asked if he liked seeing Bob in LA and he said, "Bob. YEAH!!" and put his arms up in enthusiasm.  Yesterday we went to LA for our most recent neurodevelopment evaluation with Bob Doman of NACD.
The best thing I heard from Bob was that Liam was "present" and this may seem a small thing, but it means everything to me.  Here's why:  when Liam was born I knew nothing about Down syndrome or special needs.  And I have to admit, my biggest fear was that he would have a vacant look in his eyes, that he wouldn't be present.  It's hard to admit fears, but in doing so sometimes you find you're not alone.  Someone else may be inspired by your honesty and voice and share their own hopes and fears.  This conversation started because i was recounting our breakfast experience that morning in a restaurant in Santa Barbara on our way to the evaluation.  Pedro ordered coffee and decided to put honey in it.  After one more refill, and added honey, Pedro got a third refill.  As soon as the waitress had poured the coffee Liam reaches over and hands Pedro the honey bear, saying "Honey!"    We were all impressed with his memory and that's when we were told that Liam was very "present" by the evaluator who has guided us over the last three years.
This guidance is reassuring to say the least.  I  am not concerned that the process to start speech therapy locally is taking months.  I am not worried that we are "losing time" in the wait.  Liam is most definitely not falling behind. I am not worried that our guides and trainers from NACD will ever underestimate Liam's potential. Au contraire.  They will make sure he is always progressing and we the family are in complete control.  No power struggles.  No personality conflicts.  No time wasted trying to set up meetings with psychologists, special ed directors, general ed teachers, speech therapists, etc.  No wishing we had more hours or a different therapist.  Just a quarterly day trip and as much contact as I want through phone calls, videos emailed, Skype.  I decide.  I realize it's not for everyone, but it is working for us.
And Liam's language is exploding!  He puts two words together all the time, sometimes more.  He copies what we say. He names objects around him.  Just now he saw a capital "A" in a book and pointed to it saying "A, apple", referencing an ABC phonics song he likes to listen to.  Earlier he told me outside, "Bubbles up high!"  His short term memory is improving. I've been trying to keep track of all the new things he's doing and just can't anymore! It's so much! 
Our goals going forward are going to be: potty training (we got some good ideas and think he is ready for the next step), still working on behavior/eloping, no choices at meal time (as Lupe's teachers say, "you get what you get and you don't throw a fit"), giving Liam more chores (like cleaning under table, matching socks, putting silverware away), language and processing.

New York New York

2015.  Oh 2015, you are going to be an awesome year.  In March I turn 40 and in July Pedro and I celebrate 10 years of married life.  Ten years!  So...... we are taking a trip, JUST US!  Oh my God, this is only possible because I have the most amazing parents in the world and they all live here, all four of them.
Lupe has gone away for a whole weekend with the grandparents before, and Liam has gone for a sleep over once.  It went well.  Well, he fell off the bed, but that is an easy fix.  I would normally be most amazed at the fact that we are going to be away from our kids for five days, for the first time ever.  But, all I can think about is New York City!  For anyone who might not know, I lived there for 6 years in my twenties.  Six amazing years.  1997-2003.  And I haven't been back since, it's been 12 years.  What?  I haven't been back to NYC in over a decade?!  It's amazing when  you are old enough to start thinking in decades. I will soon have been alive for four of them.  And Pedro has never been.
I want art and culture and diversity, multiple languages heard on the street, music and dive bars.  Pedro wants Times Square and tourist attractions.
So, here's what is keeping me up at night, my head swimming with memories, fleeting images of street corners, random hours on subway trains, cheap slices of pizza and happy hours at Brooklyn bars.


Pizza slices from Sal in the LES who's been serving New York pizza for eons.
Walking from Little Italy, where there are still old Italian guys in bars that look right out of a movie, to Chinatown wondering how to order some good authentic Chinese food.
Storefront signs with Chinese lettering and Hebrew.
Sixth street in the East Village, an entire block of Indian restaurants with excessive amounts of multicolor Christmas lights.
An Irish pub with straw on the floor.
The 9/11 memorial.
Pretzels in Times Square and swing dancing.
Seeing HighLine park for the first time.

Deli coffee where they prepare it for you and a bagel with scrambled egg.  Is it still $2.99 for that combo?
A new ferry line on the East River, stopping in Greenpoint, Williamsburg, DUMBO, the Lower East Side.
Maybe a fancy drink at the Ritz-Carlton on Central Park South.
Taking Pedro to the Met.  The lions in front of the main Public Library.
People from every corner of the globe.

My Uncle Patrick and Aunt Mariah.
My old stomping ground of Orchard Street, just off Houston, around the corner from Katz's Deli.
Seeing the Statue of Liberty for the first time.
Brownstones and African restaurants and black culture in Brooklyn.
Canal street.
Museums and art spaces in graffiti covered building in Long Island City.
Art. Art.  Maybe a little bit more art.
Souveniers for my kids.
Showing Pedro around my city. Oh my god I can't wait.

"Go back"

Here's the latest.  Snippets of thoughts.

One day recently I told LIAM we were going to the sink to wash hands.  We went in and I started to get the stool when he pushed me and said "Go back!!!!"     Excuse me?  "Go back!" He says.   No, he insists.   Something important is happening here, he wants to do it himself!  This has been happening for a while now, but here he came out with a command, a phrase that we hadn't intentionally taught him.  He sets up the stool, climbs up and sticks his hands under the faucet. (He can't reach it to turn it on). I turn the water on and as soon as I do he tells me to go back again.   I stay, squeezed between the stool and the door while he washes.   I want to let him continue indefinitely but even with this rain, California is still in a drought!

We play with a stuffed animal unicon and he calls it a puppy.   I say "no Liam, that's not a puppy, it's a unicorn!"   And he cracks up laughing and calls it a puppy again.   This goes on for a whiLe and he laughs harder each time.  

Today I volunteered at lupes class doing an art project.  As I walked around making comments on each kids project he followed me, also touching the pages and talking about them.   Oh, and when we first walked in half the kids shouted out, "Liam!"   I love that he is so loved!

His four new words this week, written words to learn, are: oatmeal, eggs, banana, kiwi.   He knows them already and it's only been four days.  

6:30 am.   He comes to the side of the bed with the little yellow sauce pan I usually make his oatmeal in and hands it to me saying "oatmeal".

His "NOOO!" Is getting louder and stronger.

Papa was his favorite for two months, wanted nothing to do with me.   Now he's mixing it up, you know, to keep us on our toes.  So we never know what will happen.   One day he wouldn't let me push him in the shopping cart, only Lupe.   One night every time pedro looked at him at the dinner table he went "arhhhhghgh!" (or something like that) and made a horribly pissed off kind of face.  He only seems to come to the table to eat when he decides to come to the table.   Otherwise there are torrents of tears.   He hasn't suffered form hard dry boogers in ages, the Crying keeps those nasal pasajes well moistened.  

He tries to tell us things and sometimes we don't understand.   We'll repeat back to him what we hear, he'll pause, shake his head and say no, then repeat it.  Poor guy.  It must be so frustrating.  

In preschool, the kids sometimes interact with him, though not quite as much as they do with the rest who can all hold conversations.  Sometimes this is hard for me.  I really appreciate the parents who have developed, and show great affection and care for him.  They are the ones who also encourage their kids to interact with him.  The kids like him, they just think he's younger.   And he is a bit, after all he is 3.5 and it is a class for three and four year olds, one even just turned five.  

I still wish I lived closer to another family doing NACD, the neurodevelopment program we do with him. I have decided to try speech therapy locally.   If we have a good match with someone who helps us implement our program, fantastic.  If it's not worth our time we'll stop.   Part of me wants to show parents it can be done, to go without "the system". 

Liam's hair has crazy red highlights.  My scots-Mexican boy.

Lupe is doing well.   Has a hard time with math concepts.  Enjoying Girl Scouts.  She's a good sister.

Next year.  2015   I turn 40 and pedro and I celebrate ten years married.  We're going to New York. 

A is for Awesome and Aggravating

Sigh.  It's been hard with Liam recently.   Most see a shy, reserved Liam, but he is a different guy at home with us!  He can be incredibly amazing and incredibly frustrating.  There are days when the whining is non-stop.  And he is in an " I only want papa" phase.   He is defiant and challenging.  I love him, but.....

I'm pretty sure he has A LOT to say and is frustrated at his inability to express all his thoughts and needs.    At our IEP in July he had 30 words and that has tripled at least in the last few months.   He is in the midst of a language explosion:new words, copying us, saying words he hears in songs (he first did this with Frozens Let it Go, saying "go", and now he asks for the song "letitgo" or gaga when he wants dance music).  

He is amazing.  I can't wait to have back and forth conversations with him.  He is starting to put words together.  Here are some examples:

"Mama, letitgo"

"Mama, ball.  Blue ball"

"More please mama,  oatmeal, Liam". 

"Hot queque (pancake)"

The other day while I was making dinner he grabbed a bag off the counter and grabbed a carrot the size of an ear of corn and starts knawing on it, "mmmmm" he says.  Then he grabs the cup Lupe was using to drink a smoothie.  It's empty.  "Oh no" he says.

He also unrolls all the tp from the roll and puts some in the toilet.  

He also finishes dinner and asks for GAga.  We oblige and put on our pandora dance station.   And he has a twenty minute dance party.  He is BUSTING out the moves.  Spinning.  His first jump, we think, with two feet off the ground.  If we look away or try to talk he comes and touches our knees almost shouting "mama!  Papa!"  so that we keep watching his dance party.  He is pouring sweat by the end of it. It's pretty great. 

Crazy hair day at school.  Lacking some Aquanet so it didn't stay up.

Elsa, and Olaf of course.

Mamados!

May I present Liam

I have thought and thought about how to start this, describing Liam in more detail to you, the parents who are slowly getting to know him in our cooperative preschool. But it's 10:30 and I am exhausted!   You are parents, you get it!  So forgive me as I ramble a bit....

There is so much I want you to know.    I'd like to think that we all like the opportunity of not only being a part of our own kids education and experience, but of collectively helping every child in the class reach their full potential, as best we can.  

It doesn't matter if you have known someone with a "disability" before, or down syndrome in particular, because Liam is not like any of them.   He is just Liam.   And as much as he is getting out of the class, a language rich environment and loads of fun playing, your kids also have the opportunity to learn from Liam.  They may be only 3 and 4, but they can still practice how to include someone in play.

Have they mentioned Liam to you at home?  Have they noticed yet that he is different in any way?  I have no idea when that might start, but I am curious.   I have assumed they might just think he is younger since his expressive language skills are delayed.   He understands though!   And he is in the midst of an extraordinary language explosion, though this is shown to us only at home where he feels most comfortable.  

Make sure your child knows he is not a baby because he doesn't speak a lot yet.   Maybe you can think of some examples of other friends who need "extra help" with something.   You can say, "Liam is three like you(or Liam is three, almost four like you).  He understands us and loves preschool just like you do, but he needs extra help learning to talk. (Here add in an example: remember so-and- so, it took them a long time to learn to walk.   It's taking ____ a while to learn how to share).  What is something that you are learning to do?  We can help Liam though, he'd love to play with you!  Let's make sure he can see us when we are talking with him, it sure can be distracting in our loud class when everyone is playing"

I like to talk about Down syndrome.  I like to answer questions.   I'm totally cool with that.   I love people who feel comfortable asking things in order to educate themselves, expand their world view and open their hearts even more. 

Here's an example.   Is there a spectrum when it comes to DS?   Good question, and the answer is yes and no.   I suppose you could say there is a spectrum for everyone.    We all have different strengths and weaknesses.    Some are good with people, others good with numbers.  (Thank god for IT people who are good with computers, cause I'm not one of them!). Some may be doctors, some may work retail, or.......etc etc.  I think it's nature/nurture, both.   We are born with innate abilities and distinct personalities, but much of our potential and ability Is shaped by our upbringing, education and expectations.  (We have high expectations for Liam)  Liam is doing pretty well because maybe that's just part of the essence of who he is, what he was born with, but also.....pedro and I work damn hard. We do.  

I would love to have your updates after a class that we weren't at.  (You can text me!)  I know every parents would sometimes like a secret mirror to look through and see how their child does without them, how they interact with others.   But with Liam it's different.   We are SO attentive to every little stage of his development.   Most parents would be receiving services for their child with DS right now through the schools and special ed preschools, but that route isn't for us.  We had great therapists the last three years, but most of his growth has come form the work we do with him at home.    Pedro and I have been his strongest therapists and his greatest advocates.  So send me a quick text if you have something to share or feel so inclined, it would be much appreciated.   If you can't, no worries!   The time goes by quickly and watching all those kids is exhausting!

Feel free to keep on reading the blog, I have talked a lot about our journey and love to share.

It's now 11:30 and I should have been in bed ages ago. Good night!

Problem solving

While I was taking a quick shower Liam  managed to get the iPad off the counter almost toppling a bunch of heavy things on his head.  Then he took it and sat in  Lupe's pretend store and is contendedly watching videos that he is finding himself on YouTube.  His preferences lean towards homemade videos I make, Jake and the Neverland Pirates or anything to do with Frozen    Now I just overheard him saying "goal"as he browsed through soccer videos.

While Lupe does gymnastics

Inclusion.  Because a child with a delay needs to be around peer models so that they can watch and learn.  Liam does everything that his sister does- look at the way he is sitting on that couch in the gymnastics waiting room!





He is curious and he likes other kids.  Here he is hanging out with the big kids on another day.  He will usually go up to someone and touch their shoulder to say hi. 

Liam practicing his moving across syllables worksheet.  He is now learning to say donut and cocoa before he even knows what those sweets are.  He can also say mommy and daddy although he calls us mama and papa so I'm actually not sure if he knows what mommy and daddy is

Liam finally learned how to turn the thingy to make the lion pop out.  He used to only do the ones where he had to press to get an animal to pop out.  Turning is harder. 

Language

We were sitting on the couch and we had just finished reading Harold and the purple crayon in which Liam pointed to pictures saying the things he knew how to say -approximations -for moon boat baby    Then Liam says laly which is his way of saying blueberry and then he signs eat and says more more laly.  I repeated what he said asking him if he wanted to eat more blueberries and he said "yeah!"   I asked him if he wanted to eat his blueberries with yogurt and he said "no!" We have just had a conversation.  This is huge.

I asked Liam if he wanted to go outside and he seemed to say please and when I asked him again he said yeah.

There is definitely a language burst happening over the last month or two at our house.   We will have to work hard at pronunciation and articulation but I see this glimmer of hope that all the hard work we have done over the last three years and all the input is proving to be good

The other day we were laying in bed about to go to sleep -this is where a lot of things tend to happen, right before bed -and without any prompting Liam starts touching different parts of my face and naming them out loud : Eye,  nose, mouth. 

More new words every day: paper, aly (teacher Sally), Heidi. 

He copies us all the time, things like: whoa, wow, oh no, Ay yay yay.  

He talks to us, watching us to see if we understand.  Sometimes we don't.  But we are so hopeful and excited.