Down syndrome awareness month

There are many in the online Down syndrome community who blog, and there is this thing called 31 for 21. October is DS awareness month and bloggers write a post every day of the month (as you remember, DS is Trisomy 21). I may not do 31 posts, but I will write a bunch this month as I think about what it means to be an advocate for my son, how informative the online community has been, how it feels to organize an event for this month for my work, what I would say were I to give a presentation about being a "special needs mom" and more.  

But I leave you with this question, and I really am curious to know your answers:  what do you know now that you didn't before knowing Liam?  

Somersault.

Last night Lupe and Liam were rolling around and bouncing on the bed as they often do before bedtime. And then all of a sudden Liam did a somersault.  A real one. Took us all by surprise. 

Writing

Wow.  Lupe is starting to sound out words in her head and figure out how to spell them.  That is AWESOME.  As I do with Liam, I give her lots of INPUT: reading books, pointing out letters and sounds, etc.  and you're not sure if it's sinking in, and then one day, boom!  She comes home from school showing me what she can write. Her teacher tells me that she made the connection between Lu-pe and Lu-na.  She sounded it out and wrote it.  So below she wrote elephant, penguin.  and then Luna, ombligo, es belly button.  

This is fun.  

Sharing the joy

I have read that there are statistics out there showing that the rate of divorce among married couples who are raising children with special needs is really high. I mean crazy high.
And yes, there is a lot of extra stress.
But when Liam pulls a new trick out of his hat like saying mama last week for the first time or walking backwards, or even super subtle variations in the sounds he makes or the way he moves his body, all Pedro and I have to do is look at each other. We recognize the sparkle in the others eyes and no words are necessary. It is a joy that I can't share with anybody else in the world in quite the same way.

Holy cannoli, slow down!

Holy cannoli, this is happening too fast!  Ever since Lupe turned five in May things have been speeding up.  This summer she lost her first tooth (on the way to Paris).  She took swim lessons, cried a lot and then finally learned to swim a little bit. She started kindergarten.  She loves it. Her hair got longer, her legs got longer.  She still wants to be a mama.  She gets over tired and then cries in the shower cause I "have better dance moves" than her, or can hula hoop better. Oh my, where does that come from? She's learning to read- in Spanish.  She drapes herself over the couch like a teenager.   She's annoying and amazing.  

And Liam.  He turned two. In Heathrow Airport, London.  We came back from our trip and he really turned two.  Tantrums. Wriggles out of car seat straps.  Stroller straps.  High chair straps.  Shopping cart straps.   And, he's walking!  He'd been taking steps for a while, but in August we felt we could say he's really a walker.  And now it's September and he walks more than crawls.  It's awesome.  All these things that have taken so long to get to, but they do come.  And I know his walk will get better, he'll bend those knees and bring the legs closer together.  His talking, that's another slow one, but I can now confidently say that it will get there. But I want him to be as close to his peers as possible.  Thats why I work extra hard at certain things with him instead of just thinking he'll do things in "his own time".  It's still not easy sometimes to see kids his age doing so much that he can't do yet.  But that's just part of my roller coaster ride.  Some days it's cool.  Other days it makes me a little sad.  Up down.  

Let me end by saying that this week Liam said "mama". First he said it only when prompted (and this is after months, many months of asking him to say it). But I think I've caught him saying it a couple of times spontaneously.  Melts my heart every time, and will continue to do so.  

A glimpse of future family life

It's 330 on Sunday and I am changing out the laundry on the porch and Lupe and Liam are playing together in the Playhouse. We are fixing up our porch and yard to make them more fun and enjoyable spaces. Liam can crawl and also walk now, wobbly but walking. The driveway is blocked off with a gate so that the kids can go back and forth between our yard and their grandparents yard next door. And I feel like it is the beginning of a phase of parenting and childhood that I've been looking forward to. Need doing chores and the kids playing on their out. It seems so boring and simple yet it feels like a definite turning point in the family life.
Last night we had friends over for a barbecue in the backyard and the kids played (except Liam who stayed in my lap the whole time). Simple simple pleasures that make life good.

I'm sure many of you with more than one kid have had a similar experience: the first kid is well documented and the second kid comes along and you become too busy for all those fun details and traditions.
Well I am starting something that is not a new idea but I hope that I can remember to do it every year. Interviews on the first and last day of school and a self-portrait. I know that in just a couple of years I will look back on the kindergarten one and feel all warm and fuzzy inside

He's going to learn to read

At our most recent evaluation in the bay area we were finally told that he is ready to start learning words. Written words. I am really excited. And it's awesome because I can actually teach Lupe and Liam at the same time. Every week we will learn five new high interest words and review the previous weeks words. Lupe is on the Spanish side at Pacheco so at school she will first learn to read and write in Spanish. But I think I can compliment that here at home by learning to read in English.
Here is a picture of Liam and his first five words.
Before long Lupe and Liam will be conducting the story hour at the library!

Graduation

My little, I mean big, I mean little girl finished preschool!

Mi artista

It's amazing how her drawing has blossomed this year. I've dreamt of having a daughter who takes her drawing supplies wherever she goes. Just like when I was little. Fun!

Drowning in paper

Having Liam also means a lot more extra paperwork and record-keeping. Cake will get me through it

Eating with a fork! A first

Class

This day Liam decided peanut butter in the hair was the new thing. So you know, I just went with it. Got it to spike up a bit. We get to our parent participation class to find that the sensory tub is filled with oats. So he kind if smelled like a cookie.
Changing subjects, he's leaving my side more. Goes and sits right in front of Teacher Julie during circle time. And even let her do the song Noble duke of York on her lap! Go Liam!

Doula? OB? Midwife? Nurse?

Seriously. She's not yet 5, but ask her what the placenta is for. Or how the food gets from the mom to the fetus. Or about menstruation. She will tell you. Want to know about the division of cells, or the difference between identical and fraternal twins? Or How about vaginal versus cesarean birth? Strangely, she has not yet asked how exactly the sperm gets from the papa into the mama's uterus. Ok, so I did kind of skip that part in the library book about sexual intercourse (i also skipped contraception and stds). I'll wait till she asks about it.
Pedro and I were watching The Cosby Show last night and Rudy got her period. Se was the last of the daughters and Clare was so excited for her little girl to be going through this change, but Rudy was reticent. Finally she got Rudy to talk and she said, "Mom, we were studying grammar and I got my period. Do you know how embarrassing that was?"

Pants

Liam just took his own pants off for the first time. Now, normally that would be a huge accomplishment but I think his biggest help there was the influence of...gravity! See, my skinny minny's pants just simply started to fall off. So he took it from there. Now his pants are around his neck like a scarf, his preferred way of wearing them.

Books and pteranadons

He can spot and pull out his favorite book from the shelf.
She can tell you whatever you want to know about a dozen or more dinosaurs

Park time photos

We're going to the zoo, zoo, zoo

Love my husband. A few days ago he proposed a spontaneous day trip. At 7:45 in the morning as we were laying in bed trying to convince ourselves to get up to get Lupe ready for school. And I thought: but Liam has therapy till ten. Lupe has school. Hey, why not?
So we took Lupe to school and had Liam's therapy and at the same time got ready for a day trip to the Santa Barbara zoo. The last time we went there was the day before Lupe was born! I have a picture of me standing in front of the elephants looking HUGE. As huge as an elephant.
We had a great time. I loved the elephants bathing themselves with dirt. And the lioness starting fixedly at the zookeeper as she came and dropped off the afternoon food. Lupe loved seeing the penguins being fed.

Why us? Why indeed!

There have been occasional moments, more at the beginning, and much less so now, that I have asked myself, Why us?
Why did we have a son born with Down syndrome? At the beginning it was mixed with fear and worry about the future, the unknown. I was told, by a few close people I love and trust, that we were chosen to be his parents for a reason. Only the most special parents would be chosen for the honor of raising this special child. Through all the roller coasters of emotions I did believe this to be true. And I still do.
But then sometimes I thought, so are all parents of special needs kids truly exceptional people? People who will do all they can to help their child have the best future possible? Parents who will begin to understand love, acceptance, diversity in a whole new, and deeper way? Rise to the challenge of all the extra doctor visits, therapy, etc? While many are, the truth is, there are some who aren't. Some parents who maybe don't believe in the true potential of their kids, who don't deal well with all the extra challenges ......
Why? Why did god choose those parents also? Didn't god choose only the truly special ones, like us? And it occurred to me, that it was a test god gave those parents. He was giving them the opportunity to let that child change them. For the better. But they didn't take the challenge. And I think this can be applied to many areas of life, the times when something difficult is happening. We can ask ourselves: why me? And we can know that we are being given the opportunity to grow. Either because we can handle it, or we need to be reminded of our own ability to grow and change. Perhaps it's a wake up call.
Having a little guy like my Liam is making me a better person. I appreciate and marvel at the little victories, every new thing he learns to do. I pay a lot more attention to my family's health. I am learning to look at everyone with new eyes, to know that everyone is facing some sort of challenge, and it is unique to them. Everyone has a role to play. A place in this world. We will not all be presidents, doctors. Some people need to pick vegetables, bag groceries, be trash collectors, work retail.
We don't all need to be "successful", with high positions, good money, our own house, or out changing the world in big ways.
What we need, is to be happy. Isn't that what success should mean?

Reading in bed

If there is something that I am very proud of it's that my kids love books.