World Down Syndrome Awareness Day

3:21. The 21st of March, the third month. Down Syndrome is three copies of the 21st chromosome, which is why today is world Down syndrome awareness day. It's a mystery why October is DS awareness month, when it should be March, right? Quien sabe.
Anyway, the cyber world was talking about an idea for this year to promote awareness and start dialogue: the Lots of Socks campaign. The idea is for everyone to wear colorful socks, or lots of them, or three of them (get it?) and this would create awareness and dialogue etc etc. so in my new job as a parent resource for families with special needs I was talking about this with a coworker who also has a child with DS and she thought it was fun.
Today I have also been on the blogosphere and came across some very good points made by other moms. Basically, enough with this "awareness" stuff, what we need is action to promote respect for people with disabilities. Actively campaign to eradicate the "R" word in everyday slang, support legislation for people with disabilities, etc. Food for thought, eh? So next time I want to incorporate some action into the awareness. I learn more all the time.
But you know, you all can research yourselves about DS. What can I share with you? Well I can tell you about my little Liam and the wonderful person he is becoming. Because while you may care for him and our family, while you may say hi to him and see the pictures I post, most of you don't know the real Liam. The Liam that shines through when he is with people he is familiar with. Cause many of you have offered to hold him or play with him and then seen as he clings to me and makes whimpering sounds. Or sometimes being around a group of kids he often sits and takes it all in without doing much.
Liam plays hide and seek with Lupe and let's out a hearty "ahhhh!" screech when someone is found. He will bring me a book and then sit in my lap and keeps scooting himself against me, as if he can't get close enough. He is ticklish on his belly and neck and will giggle hysterically. He is fascinated by his sisters belly button. He gives great hugs and slobbery kisses. Today I asked him if he was my snuggle bug and he gave me a big smile. He listens and understands more than anyone realizes. Once we were in front of the house and a woman was getting into her car while talking on her cell phone and said bye and she was I don't know how far away but Liam started waving. He has good hearing and understanding. I can't count how many songs he can do the hand movements to now. He's just super awesome all around and I love him so!

Snot

This post has nothing to do with the pictures I am including. It is unbelievable the amount of snot coming out of my poor little guy. He is so congested you can hear him breathing from across the room. But then tonight something truly amazing happened. I held some tissue to his nose and said, "blow". And then to my complete astonishment he did. He blew!

Shoes

He's trying so hard to put on his own shoes. Clever guy.

Thirty eight

I used to make such a big deal about my birthdays, big parties and other memorable stuff. I feel like that hasn't happened in a long time, and that's ok. But it is important to celebrate yourself I think. To bask in some glory. And it helps to have a four year old who is very excited about your special day. It makes it more special. Thank you Lupe!
We had a lovely family dinner Saturday, with my kids, my parents and my wonderful husband. There was singing and a vegan chocolate cake, and thoughtful gifts. I love my family.
And on my actual birthday, Monday, after school, my mom took the kids and I went to have lunch, drink wine in the middle of the day, and read a book at a lovey local restaurant with a creek side patio. All by myself. Oh it was grand. Luxurious. I walked downtown beaming from ear to ear.

Spinning

When something new is added to our therapy routine it is fun to get going with! Spinning is good for vestibular input which means awareness of your body in space

Getting into stuff

This is what we want! Getting into stuff, just what a twenty month old should be doing. Except the other day I was wondering where he'd gone to, only to find him in the bathroom- standing at the toilet with his hands wet! Eww!!

It's a full life we lead

When I post blogs from my phone the pictures never post in the order I think they will. So I will talk about the pictures below but they may be out of order.
Liam has learned how to be gentle and give gentle touches : I took a photo of him gently touching the boy next to him at story time.
When he wakes up in the morning or after his nap he will sit in his crib for a while looking at books or he has now discovered that he can push aside the curtain and look outside at the street.
We are so grateful to have a friend 10 miles away who has ducks chickens and eggs and now newborn goats as well. Seeing day old goats nurse from their mama and jumping on the trampoline with a sprinkler underneath? Yes please!
Liam cruising along the chairs at the shoe store. What fun to crawl and explore new places!
We stopped for lunch in Santa Barbara after our most recent neurodevelopment evaluation down in LA. That's a cool town.
And I got a job! I am going to be a parent resource eight hours a week at a group called parents helping parents. They wanted someone bilingual with a child with special needs and the job practically fell into my lap. I am thinking it will be a good thing to get out of the house a little bit and do something different. More adventures ahead!

A glimpse

Liam doing his own oral stimulation with peanut butter on a Nuc brush. Lupe reading to Liam in bed. Lupe and Liam watching a video called your baby can read. Finally trying out the breakfast at Louisa's Place- two for one huevos rancheros, we'll be back! BooBoos music time and the bookstore on a Wednesday morning.

New skill

I had no idea that Liam could do this. The therapist brought over this game where you need to put the peg in the hole of the other peg. And he could to it! Developing some awesome fine motor skills! Or rather hand eye coordination

Remembering

This seems like so long ago. It was our first moment together and he was looking up at me. I even got to nurse him for a moment. And so quick so quick he was whisked away. It still hurts remembering how brief was our bonding. I should have been holding him close. And I look at this picture and think of it now as he looks up at me with feverish eyes. And I am tired of
holding him for seven days as this influenza exhausts his body with its But it is exactly what he needs from me right now.

Satisfecha, aquí y ahora

I'm making a decision. A decision to be not just content, but happy (dare I say ecstatic?) about what my life is like- right now. We have been using up a lot of energy thinking about buying a house and how hard it is to do that in the town I grew up in, where my parents live. (Plus, Wondering if I am doing enough for Liam- getting our neurodelopement program done, balancing home visits with therapists, finding alternative methods, remedies, trying to research supplements. And the list goes on.)
Their truth is, we have a lot to be happy about. We frickin live downtown! We walk to the library, to the cafe, to my parents house. We sit on the front step and watch the world go by. Although it is hard to park ,friends do stop by, cause we are centrally located. Pedro walks to work, and has for five years. Our landlord is very fair, we are not paying an arm and a leg for rent. He's a good guy. We have a big back yard, we just need to put some work into it. If we continue to live here, the kids will walk to high school. their friends will come over and we wont be always driving them places. Sometimes the house feels cluttered, and we certainly need to get rid of some stuff, but it is also cozy and creative and comfortable. It is home.

Sick

Five days of fever. Boy who wants to be held. Who the hell wouldn't?
Tired mom.

Almost 19 months

Its easy to get caught up in thinking about the areas in which Liam has some delays, especially watching younger ones advance past him in certain areas of development. We recently had a six month evaluation by our team of therapists and while lagging a bit in gross and fine motor areas, in the cognitive and social areas he is zooming ahead! I feel like writing a tally of all the FABULOUS things our little Liam can do now at almost 19 months.
Starting to point to things.
Cruising along the furniture.
Standing on his own a few seconds without holding anything.
Laughing and playing with his sister.
Swiping flash cards on the iPad.
Doing the hand movements to itsy bitsy spider, twinkle twinkle little star, buenos dias, round and round the garden, and a little bit of wheels on the bus and our bumble bee song.
Waves bye bye, high fives, blows kisses, hugs.
Touches his head, toes, belly, ears when asked.
He dances.
Loves books and turning the pages.
Loves playing with cars and trucks, can even make one zoom forward after pulling back on it.
Says "up".
Signs "eat" and "more".
Is beginning to use a cup to drink and spoon to eat, with a little help.
Can throw a tantrum.

Cutest boy ever

Monarcas

Um, yes. The Central Coast is the absolute best place to live. Yesterday we went to Pismo beach to see the butterflies and play in the sand. The cold spell is over and the days are in the 70s again. It was perfect.