ever forward, Maya

wordless wednesday: Happy New Year!

2012-01-04T11:31:00.001-07:00

halloween...a long time coming.

2011-11-25T16:02:00.001-07:00

Yes, it's taken me this long to get back blogging. After doing the 31 for 21, I needed a break. Also both Maya and I have been struggling with sickness. Off and on we have been sick for over a month. It sucks! Snotty noses, sore throats, coughs, bronchitis....it hasn't been fun. I think we are both finally on the mend.

Anyway I wanted to post photos from our Halloween. Every year is an adventure when it comes to this holiday. Now that I have a little more understanding about Maya's sensory needs, I can better deal with meltdowns. But before the trick or treating started Maya's playmates from our mommies group decided that we would have a little get together. I have to say that this was the highlight of the day for us.

This year I asked Maya's respite / habilitation provider to come along with us. Honestly Maya just adores her. Christina is an energetic college student who has years of experience working with children with special needs. In short, I get the feeling that Maya and Christina are almost like sisters. They just get along so well. I am so grateful that she has come into our lives.

At the party, Maya had a great time playing in the backyard with the other kids. There was even a pinata and pizza dinner. I was really impressed with Maya's participation in swinging at the pinata. To top it off she even ate a whole pizza slice. These are the moments that I just don't take for granted!

When the sun started to set we all made our way to the neighborhood for trick or treating. On the way to the neighborhood, Christina showed Maya how to sign "trick or treat". Within a few minutes we hit the first house. Maya signed "trick or treat" and with that, slowly I think she started to understand what she was supposed to do. She carried her pumpkin bucket a few times, but usually dropped it after she got the candy. It was cute though and I was really pleased that she was getting the concept.

Unfortunately Maya had a bad fall at one of the entry ways of a home and after that she was pretty much done. But all in all I think it was a great Halloween night. Every year it gets better. I think having the get together before the trick or treating was a great idea. I could see that as being a new tradition for sure!

Walking to the party with Christina.

Making her way to the backyard.

Getting coaching on how to hit a ball.

Playing soccer with a friend.

Getting ready to hit the pinata.

Hitting the pinata.

Picking up the loot.

The first house.

A happy girl.

After the fall, Maya got a ride.

On our way home.

31 for 21, Day 31: Happy Halloween.

2011-10-31T22:39:00.000-07:00

Happy Halloween! Happy last day of Down Syndrome Awareness month! Lots still to say and hope to keep writing event though 31 for 21 is over.

We had a busy day today and a pretty good Halloween. Maya is crashed and I'm ready to sleep also. More about that tomorrow...

31 for 21, Day 30: Quality time

2011-10-30T22:49:00.001-07:00

It was so nice to have a bit of quality time with the family today. We had some time today between doing our Sunday errands to hang out in the backyard. We took out the bouncy house that a friend lent us. It's just the right size for Maya to bounce in. Dada couldn't help but also get inside. These are the moments I cherish most. Just hanging out and doing silly things together like this is the best thing about having a family.

Maya cleaning Dada's face.

I think Maya thought the cloth was a napkin.

Trying to jump. She's almost there.

Trying to walk in the bouncy.

A very happy girl.

31 for 21, Day 29: Step Up Walk.

2011-10-29T23:08:00.002-07:00

Today was the Step up for Down Syndrome walk. One of the cool things about this walk is that it is part of the ASU homecoming parade. It's a public event and anyone who was there to see the parade saw us in it.

I want to start off by thanking all the people who supported us by donating to our fund raising efforts. The continued support that we have received has been so wonderful. A special thank you to the people who came out to walk with us. There is something amazing about having friends that take the time out of their busy lives to come and show their support. I'm very grateful for the friendships that have grown from having Maya in my life. If it wasn't for Maya I wouldn't have met most of these people. And I wouldn't have been able to develop a special connection with the people that I already knew.

I have to say there were a few pitfalls today. Maya's sensory issues do play a big roll in how she interacts with everyone. Unfortunately the combination of loud music, cheering and all the people moving about, did end up being too much for her. There came a point where she couldn't take it anymore and became upset. From that moment on, she never quite got back to her usual self. But we made it through the majority of the activities and had an overall great experience.

So here are some photos of the day...


lots of shadows but the only photo of us three.

Riding the light rail to the event.

T and M checking out the pirate ship.

Playing football.

C passing the football to M.

Maya's Dream Team, minus a few people.

Waiting for the parade to start.

Teammates watching the band set up.

Happy Maya.

In the parade.

Our group walking with everyone.

Tired dada and Maya chilling at home.

31 for 21: Day 28, Courage.

2011-10-28T22:39:00.001-07:00

You are afraid and yet you still want to go inside.

You want me to hold your hand,

but I say, "You can do it."

It's OK to be afraid.

Maybe I am also afraid.

Then you run around the house,

and make a game out of it.

Courage comes in many forms.

You always show me that.

31 for 21, Day 27: Field trip.

2011-10-27T22:49:00.003-07:00

Today Maya and I went on a field trip with the school. I often have mixed feelings about these kind of events because Maya usually has her own agenda in mind and most of the time it has nothing to do with what is going on. When we get to the place, party or whatever it is, she doesn't always know what we are there for. Of course this never stops me from taking her. With enough exposure I figure one day she will get it.

First off I have to say that the weather was fantastic! This might not mean a thing to most people, but in Arizona we go through brutal summers. The end of October is when it finally starts to cool down...and I mean the end as in the last day of October. So when I woke up this morning feeling the chilly air, I was grateful.

As soon as we walked into the pumpkin patch, Maya went straight to the pumpkins and actually sat and posed for me. We did a little pumpkin searching and I was so proud of Maya for picking out her own pumpkin. She also was very captivated by the guy on the tractor that brought more pumpkins. It was the first time I've seen her so interested in a tractor.

Next, we decorated the pumpkins. This is a big deal because I can really see how much she has grown. She stood all on her own on a hay bail while trying to decorate the pumpkin with stickers. She understood what we were doing. And as far as I could tell she was enjoying it. A double hooray because she didn't put one of those stickers in her mouth!

After a hayride and checking out the farm animals, we went onto a hay bail maze. The last time we were at this pumpkin patch, Maya was close to 18 months old. She wasn't walking yet and she had no interest in any of this. But today, she went into the maze and she followed the others all the way out.

She lasted the whole time at the field trip, including eating a snack with everyone. It may seem strange to some, but it made me so proud to see her do these activities. It eases my mind. She is able to interact with her peers and do things that every kid does. Even if she does it a little differently she has a good time doing it.

Maya is telling me the pumpkins are cold.

"Where you going tractor man?"

Serious decorating going on.

Entering the maze.

Running in the maze, following the others.

Us.

31 for 21: Day 26, Wordless Wednesday

2011-10-26T21:20:00.000-07:00

31 for 21, Day 25: her own story.

2011-10-25T22:51:00.001-07:00

Our creative fashionista strikes again.

There she is helping Dada take out the recycle.

Everyday I am amazed by her way of interacting with us.

She is watching our every move so she can create her own stories.

I am glad to be a part of it.

31 for 21, Day 24: Lady Bug.

2011-10-24T22:49:00.000-07:00


A little pre-Halloween fun!

31 for 21, Day 23: sick days.

2011-10-23T23:22:00.001-07:00

it's been a rough few weeks. Maya has been struggling with a bug that just won't get out of her system. Boogies, an ear infection, and a chesty cough, it's been a rough road. All this time Maya doesn't even know she's sick. But for me, well I worry and I don't rest when I worry. Yes mama got sick too. Oh the fun!

31 for 21, Day 22: The big girl chair.

2011-10-22T19:46:00.000-07:00

This week I took Maya to get a haircut...a much needed trim. As soon as she saw the building she knew exactly what we were going to do. She didn't want to go and started to scramble for a way out. Luckily the lady that does her hair, already knows she loves Barney. So she had already popped in the tape and started the Barney video. At that point I found myself trying to figure out what exactly to say to this three year old that just hates the water being sprayed in her hair, hates the sound of the blow dryer. Barney, that's all I could say, "Let's go see Barney."

Now Maya is getting more strong willed and this mind you is a good thing. She is developing in the regular course of a three year old I guess. So I usually can deal with it. But today she really tested me. She would not, and I mean NOT, bend her knees to get into the little car seat for the haircut. Usually the car is where she sits, she's OK with it. The broken horn distracts her a little bit, but mostly Barney does the trick. Today, there was no way I could get her in. She was stiff as a board. It was kind of hilarious now that I think about.

The hairdresser said, "let's try the big chair. OK at that point I'll try everything. The first thing I said was, does the seat belt work. Because the seat belt in the car is kind of broken. She said yes, so I gave it a try. Low and behold she sat in it. She didn't budge, she didn't try and get out, she didn't fight it. Then we switched Barney on and all was good.

So I'm happy to say that Maya is now using the big girl chair. At least when she gets her haircut. =)

31 for 21, Day 21: Make new friends, discover new blogs.

2011-10-21T09:17:00.000-07:00

Yay! It's Blog Hop day!

Visit as many blogs as you can in the next 24 hours and leave a comment that you've been there.

You will make new friends and discover new blogs.
All for Down Syndrome Awareness.
It's a great thing!

What is blog hop? Check out the info here: Hoppin' for 21 Blog Hop
It's not too late to join!

31 for 21, Day 20: pillow fight.

2011-10-20T21:57:00.000-07:00

You can't see it in these photos but Maya is an extremely happy, giggly girl when we do pillow fighting. She always asks for more, and more when I throw the pillow on her. I throw them lightly mind you, but she often is engulfed in a sea of pillows...and she doesn't mind it at all. In fact she loves it.

I am told that this might be a good way to help her with the sensory issues she is having. She needs more input, she needs to swing, bounce and evidently she needs pillow fights. Luckily these things all seem like play to her. But when the 20 minutes of bouncing on the ball are done I also feel like it's a workout.

So often I am worried that I'm not doing enough, but I also have to remember to see it in a different light. Perhaps it's all about play. She is discovers things through play. Sometimes she needs a little help learning to play but other times she shows me how to play. It's a collaboration. We were doing pillow fighting even before the OT told us it was good for her. If she is laughing it's gotta be a good thing... for her and me. It's good all the way around.

31 for 21, Day 19: Blog hop.

2011-10-19T21:54:00.001-07:00

Instead of wordless wednesday I wanted to write about this awesome movement called Blog Hop for Down Syndrome awareness. I'm a bit late because I often don't have time to visit my favorite blogs. But thanks to checking out The Bates Motel, one of the hosts, I've been able to join.

You can join also until Oct 21st. That's when the fun really begins. For 24 hours on the 21st, hop around the participating blogs and leave comments to spread the word of awareness for Down Syndrome. What a great idea! Here are the rules written by Erin at Crazy Beautiful Love (one of the hosts).

I hope you will join.

31 for 21, Day 18: Moms with Apps.

2011-10-18T23:04:00.001-07:00

I'm sure many of you know about this great site....but thought I would share this info for anyone who doesn't.

MomsWithApps is a collaborative group of parent mobile app developers seeking to promote quality
apps for kids and families. If you sign up for their newsletter they will email you every friday with awesome deals on apps for kids.

Also if you join them on facebook you will get heads up on lots of other deals.

Check them out if you get a chance.

31 for 21, Day 17: There she goes.

2011-10-17T21:17:00.017-07:00

She is learning how to climb those steps.

Even if she is shaking with fear.

She reaches for my hand.

With that she knows she can do it.

Even better, she goes to the tall slide,

then she pushes to the edge.

There she goes.

31 for 21: Day 16, end of summer.

2011-10-16T22:33:00.000-07:00

The end of summer is coming.

After a few more weeks, no more shorts or sandals.

I will miss seeing your little toes.

You often don't stand still long enough for me to document your feet,

but today was a good day.

31 for 21: Day 15, I wonder.

2011-10-15T23:02:00.000-07:00

After you helped me put together your Mr. Potato heads,

You took them from hands,

and held them close.

Then you gave them a hug and kiss.

Who taught you that?

I wonder.

31 for 21: Day 14, Maya's Dream Team.

2011-10-14T21:18:00.000-07:00

I'm so excited to say that we have 17 people on Maya's Dream Team for the Step Up for Down Syndrome Walk. We haven't put together a team in a long time, not since our first walk in 2008. Maya was barely 7 months old then and we didn't know much about the walk except we wanted to be a part of it. This year, I decided it would be fun to bring together our friends for the walk. We are putting the Team in Maya's Dream. So now we have a little entourage! I'm really looking forward to it.

This year I also decided to make buttons and stickers for our team to wear during the walk. That way everyone knows that we are Maya's Dream Team. Thanks to my friend, Sammi's Mom, for giving me the idea. =) I can't wait to get them in the mail!

31 for 21: Day 13, time for healing.

2011-10-13T20:49:00.001-07:00

I'm so tired.
She's tired but won't admit it.
Tired of being sick.
Now we are on the mend finally.
Slowly...
It's time for healing.

31 for 21: Day 12, Wordless Wednesday

2011-10-12T21:15:00.000-07:00

31 for 21: Day 11, the small stuff

2011-10-11T21:42:00.000-07:00

Here are some of the small things I'm grateful for, they aren't big milestones and some of them are not quite there yet, but they are just as important as the big goals.

1) Maya doesn't throw her food or drinks off the table (as much as she did before).

2) Maya is trying to feed herself. She is trying to use a fork and spoon. Before she had no interest at all. It's not perfect, but it's the effort that I am glad for.

3) More and more, Maya signs potty when she has to go. She doesn't always want to get on the potty, some days it's a battle of the wills, but she is getting better about this.

4) She let's me give medicine to her, even though she absolutely hates the taste. This is a big one because it makes life so much easier. Especially when she is sick and cranky.

I don't take anything for granted because for Maya even the little things can be a challenge. One moment at a time, one day at a time, the small stuff is getting accomplished too.

31 for 21, Day 10: best friends.

2011-10-10T21:28:00.001-07:00

Best friends are made of this.

Riding in the car together.

Piling sand on a shelf, then cleaning it up.

Running together on the grass.

Playing peek-a-boo with a tree.

31 for 21: Day 9, 10 things.

2011-10-09T22:29:00.000-07:00

31 for 21: Day 8, Maya's Dream Team

2011-10-08T23:30:00.000-07:00

I'm not very good at fundraising...In fact I never did it before I met Maya. She's my one and only reason for doing something like this.

This is our third year fundraising for the Down syndrome community. There are a lot of organizations trying to raise money for their cause right now, many walks in these fall months. Why donate to our cause? Why walk in the Step Up for Down Syndrome walk? Well because if Maya has touched your life, then you know it's important to bring awareness to everyone. It's important to let parents, family and friends know that having a child with Down Syndrome is not a prison sentence. It's not the end of the world. Yes, it is a challenge but it is also a beautiful dream come true.

DS Network is a grassroots organization that works to support and inform not only families but also educators and service providers who are blessed with knowing a person with Down syndrome. It is a good organization and I'm grateful for the work they do. I'm happy to do my part in raising a little money for them.

http://www.firstgiving.com/fundraiser/joann-briseno/stepupfordownsyndromeaz2011

31 for 21: Day 7, After nap...

2011-10-07T22:06:00.002-07:00

"Hello? This is Maya.
What are you doing right now?
I'm playing with this piano.
Singing and dancing, and posing for my Mama."

"Let's play some music and sing B-I-N-G-O.
I try to sing it, can you hear me?"

"Oh yes, I love my dolls.
I make them dance to the music and then I fling them in the air when I'm done."

31 for 21: Day 6, sick day.

2011-10-06T22:00:00.002-07:00

Today was a sick day for Maya. She caught a cold that I had earlier in the week. So we stayed home from school this morning. No school, no therapy, no play dates. We played it low key today. What is low key for Maya might mean something different than for you and me. Either way it was a day without an agenda.

Even when Maya has a cold, she doesn't let that get in the way of having a party in the house. First thing she did this morning after getting up was sweep the living room. She swept the walls, chairs, sofa and floor. It was really cute considering she's not quite sure how to hold her little play broom.

When it was time for breakfast, as soon as she sat in the chair she signed "games please". That is something we do when we sit at the table while she eats. In the hour it took her to finish 2 bowls of cheerios and fruit with yogurt, we played four "games".

Those games or activities included, singing the itsy bitsy spider and five speckled frogs songs, using a felt board. I sang and Maya would move the little picture pieces on the board. She was trying to put voice to the songs today which was really encouraging.

Then we moved onto one of her favorites, drawing on her musical sketch board. This is made by crayola, it is a board that you draw on while music plays. It's called crayola beginnings color me a song. The faster you draw the faster the music plays. Maya loves it.

After that we did letters A-E on her letters sound matching board. This is a cool activity using upper and lower case letters with pictures of items that begin with that letter.

Finally we did some stamping with a foam animal set I recently bought. It was our first time using it and even though I wasn't impressed with the quality of the stamps, Maya had a great time. She kept clapping every time she made a stamp.

Maya is always busy. No matter what she is doing she is doing it fast and furiously. The great thing about "playing with games" at the table is she is very focused on each activity. Because she is in a high chair she is locked in so to speak. Yet she doesn't has a problem telling me when she is all done with a game. Most of time what follows are the signs, "more games please". =)

Making some music and art.

Stamping animals!

Our morning activities.

After breakfast, Maya actually posed for me. Sweet!

31 for 21: Day 5, Wordless Wednesday

2011-10-05T21:14:00.000-07:00

31 for 21: Day 4, New blog.

2011-10-04T19:45:00.000-07:00

I wanted to share a blog that a friend of mine has just created. Janet is a mom and advocate for her daughter Lily. She's an educator and has also been president for the Down Syndrome Network, here in Arizona.

At present Janet is working on her doctorate in Teacher Leadership. Her study is focused on understanding the challenges teachers with students with Down syndrome encounter so that more effective training can be developed. Because of her background in education she has started this blog with that in mind.

In many ways this blog is personal but it also touches on various teaching techniques concerning our children with Down syndrome. She plans to post a couple of times a week.

Please check the site out at: http://downsyndrome101.com/

31 for 21: Day 3, Bubbles and Chalk.

2011-10-03T19:03:00.000-07:00

Bubbles and chalk, these are the things I love.

I can draw circle and lines.

I take out all the chalk from the box and try every color.

One at a time.

I don't eat chalk anymore, well, only once in a while.

Then Mama says, clean up and I pick up the chalk and sign,

"All done."

31 for 21: Day 2, Hold my hand.

2011-10-02T15:32:00.002-07:00

Hold my hand, Let's walk together.
This is what I've been waiting for...
To hold your hand and see you walk beside me.
On the sidewalk we are hand in hand.
Just like other moms and daughters.
Even if just for a moment.

31 for 21: Day 1, Sign up and bring awareness!

2011-10-01T08:04:00.001-07:00

Hi everyone, Just signed up for the 5th Annual 31 for 21 Challenge.

If you get a chance, check it out and sign up. Lot's of great stories will be shared throughout October to bring awareness for Down Syndrome. Here's where to sign up, Unringing the Bell! And don't sweat it, you don't have to write about Down Syndrome just be a part of the movement. You can post photos or articles, or do anything you want, short or long. Just do it! =)

Here's my first simple post. I'm hoping to start doing this in general, post a photo and write a little poem or story with it. Hope you enjoy!

Shoes, Mama, Shoes!

Let's go outside and swing.

Push me higher Dada.

Make it go faster.

One, two, eeeeeeee, Go!
I feel so happy and free.

Wordless Wednesday: Cowgirl with her blue horse.

2011-09-21T16:20:00.001-07:00

Work and play, so worth it.

2011-08-30T16:36:00.002-07:00

How do we spend our days? They seem to fly by so quickly and even though I try and photography the moments I can't take enough photos of all the busyness that goes on in a day. I've been thinking I need to write about all the fun stuff we do, because sometimes I feel like it's all work, work, work. From an early age, maybe 3 months old if I remember correctly, Maya has been working towards a goal. Whatever that goal is at the time seems to be the only thing that matters. At times it feels like forever before the milestone has been met. Meanwhile we are living our life, the daily activities go on as mundane as they are. Changing diapers, the process of eating, potty training, naps or the resistance of, in the end everything we do is a teaching/learning experience. I'm always looking for toys that will teach her something either for OT, PT or Speech. And yet I almost always feel like I don't do enough.

Then sometimes I give up, I feel like I can't force her to eat with a fork, I can't stop her from throwing the milk, I'm tired of making her sit on the potty when she doesn't want to. Sometimes I feel like all I do is work. While all the other kids Maya age learn new words and get potty trained, Maya resists. OK, she's not resisting really, but it sure does feel like it.

I know it's a balancing act for so many mothers out there. And for the ones blessed with a special needs child the juggling of therapy, doctors appointments, milestones, sensory diets, daily chores, among other things, well, it is what it is. Although I know that the journey is more important than the end destination, I feel like I am the one who has to keep us on the path....otherwise we won't move forward.

Sometimes it takes looking at my phone to get me back into the right mindset, this is reality...sometimes it's damn hard what a mother has to do all day, day in and day out. The photos I have taken in my phone remind me that there is a little person here developing into a full fledged adult. She is experimenting, she is playing, she is exploring. She is being silly, making up games, laughing and dancing all around me. This makes me happy and makes me know that she's in the right place.

Well enough venting, I hope it wasn't too horrible. I feel like I need to write these things down to let others know, this road is a little tougher at times, but it is so very worth it!

Not only does Maya change my life everyday, she continues to change the lives of everyone that comes in contact with her. When she hugs you and give you a big sloppy kiss, you know that her heart is pure...and it will always stay that way. I really can't think of anything more beautiful than that.

I turned around and found Maya on her tricycle one morning. She looks like she might be thinking of what she can get into next.

One of her favorite combination outfits. Very original!

Dress up time usually means dancing time.

One Sunday, Maya decided it was time to do some reading. She went over to her bookcase and grabbed one book for Dada and one for herself. Then she sat in her little chair and read the same book twice. Amazing Maya!

Eating hot dogs all on her own. Brava Maya!

Article: What's It Like To Have Down Syndrome?

2011-08-29T18:42:00.000-07:00

Check out this beautiful article from National Geographic Kids by Melissa Riggio. I just had to share it with everyone. Thanks to Sammi's mom for posting it.

I Have Down Syndrome--Know Me Before You Judge Me

http://kids.nationalgeographic.com/kids/stories/peopleplaces/downsyndrome/

When I first started to work on this story, I thought maybe I shouldn’t do it. I thought you might see that I have Down syndrome, and that you wouldn’t like me.

My mom thinks that’s silly. “Have you ever met anyone who didn’t like you because you have Down syndrome?” she asks me. She’s right, of course. (She usually is!)

When people ask me what Down syndrome is, I tell them it’s an extra chromosome. A doctor would tell you the extra chromosome causes an intellectual disability that makes it harder for me to learn things. (For instance, some of my classes are in a “resource room,” where kids with many kinds of learning disabilities are taught at a different pace.)

When my mom first told me I had Down syndrome, I worried that people might think I wasn’t as smart as they were, or that I talked or looked different.

I just want to be like everyone else, so sometimes I wish I could give back the extra chromosome. But having Down syndrome is what makes me “me.” And I’m proud of who I am. I’m a hard worker, a good person, and I care about my friends.

A Lot Like You

Even though I have Down syndrome, my life is a lot like yours. I read books and watch TV. I listen to music with my friends. I’m on the swim team and in chorus at school. I think about the future, like who I’ll marry. And I get along with my sisters—except when they take my CDs without asking!

Some of my classes are with typical kids, and some are with kids with learning disabilities. I have an aide who goes with me to my harder classes, like math and biology. She helps me take notes and gives me tips on how I should study for tests. It really helps, but I also challenge myself to do well. For instance, my goal was to be in a typical English class by 12th grade. That’s exactly what happened this year!

But sometimes it’s hard being with typical kids. For instance, I don’t drive, but a lot of kids in my school do. I don’t know if I’ll ever be able to, and that’s hard to accept.

Dream Job: Singer

I try not to let things like that upset me and just think of all the good things in my life. Like that I’ve published two songs. One of my favorite things to do is write poetry, and this singer my dad knows recorded some of my poems as singles.

Right now someone else is singing my songs, but someday, I want to be the one singing. I know it’s going to happen, because I’ve seen it. One day I looked in the mirror, and I saw someone in my head, a famous person or someone who was somebody, and I just knew: I will be a singer.

It’s true that I don’t learn some things as fast as other people. But that won’t stop me from trying. I just know that if I work really hard and be myself, I can do almost anything.

See Me

But I still have to remind myself all the time that it really is OK to just be myself. Sometimes all I see—all I think other people see—is the outside of me, not the inside. And I really want people to go in there and see what I’m all about.

Maybe that’s why I write poetry—so people can find out who I really am. My poems are all about my feelings: when I hope, when I hurt. I’m not sure where the ideas come from—I just look them up in my head. It’s like I have this gut feeling that comes out of me and onto the paper.

I can’t change that I have Down syndrome, but one thing I would change is how people think of me. I’d tell them: Judge me as a whole person, not just the person you see. Treat me with respect, and accept me for who I am. Most important, just be my friend.

After all, I would do the same for you.

What Is Down Syndrome?

Down syndrome is an intellectual disability that about 5,000 babies in the United States are born with each year. A person with Down syndrome has 47 chromosomes, microscopic structures that carry genetic information to determine almost everything about a person. Most people have only 46 chromosomes. It’s the extra chromosome that can cause certain physical characteristics (such as short stature and an upward slant to the eyes) and speech and developmental delays. Still, people with Down syndrome are a lot like you: They are unique people with strengths and talents.

The Frog Prince

2011-08-19T12:28:00.002-07:00

I wanted to spread the word about this amazing documentary about some most amazing people. I have a personal connection because my friends' son, Ray-Man, plays the Frog Prince. He is a true inspiration. I wish for Maya all the wonderful things that Ray-Man is accomplishing. ALL the actors in this production were wonderful. They were treated with respect and courtesy, talked to as any actor should be spoken to, and the end result is glorious!

"This documentary follows a young theatre troupe as they work tirelessly to put together a play under extraordinary circumstances. All twenty members of the cast face intellectual and developmental disabilities. They must work through their personal struggles, hopes and fears under the creative and therapeutic direction of a charismatic mentor and trained theatre director at The Centre for the Arts in Human Development at Concordia University. Let the drama begin."

CBC Montreal presents: The Frog Princes

http://www.cbc.ca/montreal/features/cbcmontrealpresents/the-frog-princes/

"For him, the goal is to help people with Down syndrome achieve autonomy."

2011-08-15T09:43:00.000-07:00

I finally read this article...and would like to share it with anyone who hasn't yet read it. I am so grateful that there are scientist that are working on ways to improve people's lives, instead of trying to prevent their lives from existing.

This part of the article really struck home...

"— something more than education alone would be necessary to enable the majority of people with Down syndrome to live independently. Costa said he hopes that memantine might be that something, raising I.Q. noticeably, even if modestly. For him, the goal is to help people with Down syndrome achieve autonomy. “At some point, you want your children to have their own life,” he said. “It’s about independence.”

Unfortunately, funding is low compared to other disorder research such as cystic fibrosis which has nearly $3000 per person in research through the National Institutes of Health, versus the less than $100 per person's with Down Syndrome. Research Down Syndrome and the Down Syndrome Research and Treatment Foundation has stepped up and is working on raising funds. After reading this article I plan on supporting them in this cause!

A Drug for Down Syndrome, By DAN HURLEY, Published: July 29, 2011, The New York Times

Lydia Panas for The New York Times

Alberto Costa and his daughter, Tyche.

Early in the evening of June 25, 1995, hours after the birth of his first and only child, the course of Dr. Alberto Costa’s life and work took an abrupt turn. Still recovering from a traumatic delivery that required an emergency Caesarean section, Costa’s wife, Daisy, lay in bed, groggy from sedation. Into their dimly lighted room at Methodist Hospital in Houston walked the clinical geneticist. He took Costa aside to deliver some unfortunate news. The baby girl, he said, appeared to have Down syndrome, the most common genetic cause of cognitive disabilities, or what used to be called “mental retardation.”

Photograph from Alberto Costa. Tyche in kindergarten when she was 5, learning how to write her name.

Costa, himself a physician and neuroscientist, had only a basic knowledge of Down syndrome. Yet there in the hospital room, he debated the diagnosis with the geneticist. The baby’s heart did not have any of the defects often associated with Down syndrome, he argued, and her head circumference was normal. She just didn’t look like a typical Down syndrome baby. And after all, it would take a couple weeks before a definitive examination would show whether she had been born with three copies of all or most of the genes on the 21st chromosome, instead of the usual two.

Costa had dreamed that a child of his might grow up to become a mathematician. He had even prevailed upon Daisy to name their daughter Tyche, after the Greek goddess of fortune or chance, and in honor of the Renaissance astronomer Tycho Brahe. Now he asked the geneticist what the chances were that Tyche (pronounced Tishy) really had Down syndrome.

“In my experience,” he said, “close to a hundred percent.”

Costa and his wife had been trying to have a baby for a couple of years. Daisy’s first pregnancy ended in a miscarriage, which they knew can occur because of a genetic disorder in the fetus. When Daisy became pregnant a second time, Costa insisted they get a chorionic villus sampling, an invasive prenatal genetic test. But the procedure caused a miscarriage. (The test showed that the fetus was genetically normal.) Costa vowed that if there was a third pregnancy — this one — they would conduct no prenatal tests.

Now, with Tyche bundled peacefully in a bassinet at the foot of Daisy’s bed, and Daisy asleep, Costa sat up through most of the night crying. He had gone into the research side of medicine in part to avoid scenes like this — parents devastated by a diagnosis. But by morning, he found himself doing what any father of a newborn might: hovering by the crib, holding his daughter’s hand and marveling at her beauty.

“From that day, we bonded immediately,” he told me during one of our many talks over the last year. “All I could think is, She’s my baby, she’s a lovely girl and what can I do to help her? Obviously I was a physician and a neuroscientist who studies the brain. Here was this new life in front of me and holding my finger and looking straight in my eyes. How could I not think in terms of helping that kid?”
With no experience in the study of Down syndrome, Costa took a short walk the next day to a library affiliated with Baylor College of Medicine, where he worked as a research associate in neuroscience. Reading the latest studies, he learned that the prognosis was not nearly as dire as it was once considered. Life expectancies had grown, education reforms had produced marked gains in functioning and — of particular interest to Costa — a mouse model of the disorder had recently been developed, opening the door to experimentation. He soon made a decision: he would devote himself to the study of Down syndrome.

In 2006, using mice with the equivalent of Down syndrome, Costa published one of the first studies ever to show that a drug could normalize the growth and survival of new brain cells in the hippocampus, a structure deep within the brain that is essential for memory and spatial navigation. In people with Down syndrome, the slower pace of neuron growth in the hippocampus is suspected to play a key role in cognitive deficits. Follow-up studies by other researchers reached conflicting results as to whether the drug Costa had tested, the antidepressant Prozac, could produce practical gains on learning tests to match its ability to boost brain-cell growth. Undeterred, Costa moved on to another treatment strategy. In 2007 he published a study that showed that giving mice with Down syndrome the Alzheimer’s drug memantine could improve their memory.

Now Costa has taken the next step: he is completing the first randomized clinical trial ever to take a drug that worked in mice with Down and apply it to humans with the disease, a milestone in the history of Down-syndrome research.

“This was a disorder for which it was believed there was no hope, no treatment, and people thought, Why waste your time?” says Craig C. Garner, a professor of psychiatry and behavioral sciences and co-director of the Center for Research and Treatment of Down Syndrome at Stanford University. “The last 10 years have seen a revolution in neuroscience, so that we now realize that the brain is amazingly plastic, very flexible, and systems can be repaired.”

But the effects of that revolution on Down research may yet be cut short. A competing set of scientists are on the cusp of achieving an entirely different kind of medical response to Down syndrome: rather than treat it, they promise to prevent it. They have developed noninvasive, prenatal blood tests which would allow for routine testing for Down syndrome in the first trimester of a pregnancy, raising the specter that many more parents would terminate an affected pregnancy. Some predict that one of the new tests could be available to the public within the year.

Costa, like others working on drug treatments, fears that the imminent approval of those tests might undercut support for treatment research, and even raises the possibility that children like Tyche will be among the last of a generation to be born with Down syndrome.

“It’s like we’re in a race against the people who are promoting those early screening methods,” Costa, who is 48, told me. “These tests are going to be quite accessible. At that point, one would expect a precipitous drop in the rate of birth of children with Down syndrome. If we’re not quick enough to offer alternatives, this field might collapse.”

So recently was the genetic cause of Down syndrome established that just this past March, Costa actually met the widow of the French scientist, Jérôme Lejeune, who made the discovery in 1959. The scene of their meeting was a Paris conference, named in honor of Lejeune, where neuroscientists from around the world discussed progress into treatments for Down and related diseases. Such a conference would have been inconceivable when Costa entered the field 15 years ago.

“If you think about most genetic diseases, they’re usually caused by one gene, and in fact one mutation at one amino acid,” says Roger Reeves, a professor at the Institute for Genetic Medicine at the Johns Hopkins University School of Medicine. “But with Down syndrome, you have an extra copy of all 500 or so genes on Chromosome 21.” In the first two decades after Lejeune’s discovery, the very idea of grappling with those hundreds of triplicated genes scared off scientists from any serious effort to find a treatment for what they were soon calling “trisomy 21.” It just seemed impossibly complex. “The turning point,” Reeves says, “came when Muriel Davisson made her mouse.”

Davisson, now semiretired from Jackson Laboratory in Bar Harbor, Me., spent the 1980s developing a mouse, known as Ts65Dn, that had many of the traits associated with Down syndrome, including, incredibly, the distinctive facial characteristics associated with the disease and the same slightly uncoordinated gait.

Five years after publishing news of her mouse, Davisson received an e-mail from a young neuroscientist named Alberto Costa. Her work, he told her, opened the door for him to conduct meaningful new drug research.

“It was an epiphany, that, oh, this is a field where I can apply a lot that I’ve learned,” Costa says. “Science is usually unforgiving with people who try to change career paths, but it was a risk I was willing to take.” Having earned his Ph.D. studying the electrical and chemical basis of communication between brain cells, “I figured, O.K., if there is something that can be done in this field, it’s going to be done at that level of neuronal electrophysiology.” After months of reading the latest studies, Costa knew he needed Davisson’s mice.

“He twisted my arm till I took him into my lab,” Davisson says with a laugh. “I didn’t have funding. He wrote a grant to get the funding. He is very enthusiastic.” She also found out that he was a “perfectionist, and not very tolerant of people who aren’t perfectionists. He doesn’t do experiments without being sure he’s doing them right. When he makes a finding, you know that it’s real.”
Using Davisson’s mice, Costa’s 2006 study with Prozac produced cellular changes in the brain. In 2007, Craig Garner at Stanford took the next step, reporting behavioral improvements in Ts65Dn mice after weeks of drug treatment. (Earlier this year, a company he co-founded to pursue that strategy received funding from a venture-capital firm.) Four months later, Costa published his memantine study, showing that a single injection of the drug produced behavioral benefits within minutes, enabling Down-equivalent mice to learn as well as standard mice.

Memantine works, Costa hypothesizes, not by boosting the growth of brain cells but by normalizing how existing cells use the neurotransmitter glutamate. Because people with Down syndrome have three copies of all or most of the genes on Chromosome 21 instead of just two, they have about 50 percent more of any proteins encoded in that chromosome. One result, Costa has shown, is that the NMDA receptors of Ts65Dn mice are “hyperactive” — they overreact to stimuli. By responding to too many things, they learn too little; the signal is lost amid the noise. But giving memantine to quiet the noisy NMDA receptors, Costa has found, makes the brain cells react almost normally.

Other drugs that work on different systems in the brain have also shown benefits in the Ts65Dn mouse. In 2009, Dr. William C. Mobley, chairman of neurosciences at the University of California, San Diego, and one of the most active and visible researchers in the field, co-wrote a study showing that a combination of drugs designed to raise norepinephrine levels in the brain normalized the mice’s learning abilities. Most recently, last year the Nobel laureate Paul Greengard of Rockefeller University showed that memory and learning could be normalized in Ts65Dn mice by lowering levels of beta amyloid, the protein goop that has long been known to clog the brains of people with Alzheimer’s disease.

“There’s been a sea change in our ability to understand and treat Down syndrome,” Mobley says. “There’s just been an explosion of information. As recently as the year 2000, no drug company would possibly have thought about developing therapies for Down syndrome. I am now in contact with no less than four companies that are pursuing treatments.”

Costa’s current memantine study began by testing memory and spatial learning in 40 young adults with Down syndrome. Daily, for 16 weeks, half received memantine pills, the other half a placebo. This fall, Costa will present preliminary results at a scientific meeting in Illinois on whether taking the drug made those with Down, in a word, smarter.

A half-hour from his office and laboratory at the University of Colorado-Denver School of Medicine, where he is an associate professor of medicine and neuroscience, Costa pulled into a parking space in front of his modest two-bedroom apartment. The figure of a girl in green dashed toward the car — and then vanished.

“Tyche,” Costa called to his daughter, “where’d you go?”

We both stepped out to look for her. I found her standing in front of another car, a Subaru Forester, waiting to get in. Dressed in a lime-colored shirt and skirt, the bangs of her mahogany hair framed by a hair band, Tyche stood just 4 feet 6 inches tall, with a round face, broad nose and heavy-lidded eyes.
Seeing my puzzled look, Costa explained that they also owned the Subaru — which he usually drove with Tyche. He led her to the Toyota we’d arrived in, where she sat down in the back seat. As Costa drove us to his office, I asked what she thought of her father’s work.

“He’s the greatest scientist,” she said, in a slurred, high-pitched voice. Then she added with a laugh, “And he builds evil machines.”

“That’s from watching too many cartoons,” Costa said. “Her favorite is ‘Phineas and Ferb.’ Of course, there’s an evil scientist in it who builds all kinds of machines.”

“Like the Smell-inator,” added Tyche, who turned 16 in June.

Back at Costa’s office, Tyche demonstrated to me what people with Down can be capable of even without medication. (Because she’s not an adult, Tyche is ineligible to participate in her father’s study.) On the whiteboard at the front of the room, Costa wrote out an algebra problem for her to solve: 8x² - 7 = 505.

“She’s one of only two people with Down syndrome who I’ve ever known to be capable of doing algebra,” Costa said. “Normally we give her a problem before she goes to bed.” As she solved the equation, taking six steps to conclude that X equals 8, he said, “It’s basically instead of a bedtime story.” This past Christmas, he proudly noted, he gave her the Rosetta Stone language program for learning Portuguese, and by March she had finished with Level 1 and begun Level 2.

It turns out that with vigorous education and support, many people with Down do far better than once thought possible. Medical care of heart and other physical ailments associated with the disorder have likewise achieved significant benefits, doubling the average lifespan from 25 to 49, in just the 14 years between 1983 and 1997.

Still, with an I.Q. that is typically around 50 points lower than average — with some far lower and others, like Tyche, reaching higher — something more than education alone would be necessary to enable the majority of people with Down syndrome to live independently. Costa said he hopes that memantine might be that something, raising I.Q. noticeably, even if modestly. For him, the goal is to help people with Down syndrome achieve autonomy. “At some point, you want your children to have their own life,” he said. “It’s about independence.”

Costa was raised in Brazil, the son of a marine officer and a seamstress. When he was 14, his parents divorced. His father sent little support, and he and his two siblings lived with their mother in poverty. Perhaps inevitably for someone who had to struggle to rise above his circumstances, he comes across as intense and consumed by his work; he hasn’t taken a vacation since Tyche was 3. But he is also devoted to his daughter and wife, spending most of every weekend with them.

“She’s a great kid,” he said. “She has a very strong personality. In many ways she has features of a regular teenager. She doesn’t like me to get into her bedroom. She loves pop music and vampires.” Her relatively high functioning, he told me, is important to him. “If Tyche were really severely affected, I don’t know if I would have had the energy to go on with this business.” Then again, he admits to having paternal feelings toward all 40 young adults in his study, whose cognitive abilities vary widely. “At the end of the day,” he said, “their parents know someone really cares for their kid. It’s not an academic experience for me. It’s my life.”

In January, and again in March, a spate of news reports described new studies of the noninvasive blood tests that would allow pregnant women to check for Down syndrome without the risks and discomfort associated with chorionic villus sampling and amniocentesis. Few of the articles, however, took note of the profound unease many medical ethicists, including some who are ardently pro-choice, feel about the tests and how they might lead to a dramatic reduction in the Down syndrome population.
“Even people who are traditionally against abortion are sometimes willing to condone it when the abortion is of a fetus with a disabling trait,” says Erik Parens, a bioethicist at the Hastings Center in Garrison, N.Y. “But it’s important to recognize that there is a huge range of genetic disorders. In their own way, a lot of kids with Down syndrome flourish, and so do their families.”

Advocates of the new tests insist that parents will be given news of an affected pregnancy by a trained geneticist who will present the information fairly and fully. Critics, including Costa and many other parents of children with Down syndrome, say that such dispassionate approaches rarely happen in practice, with many obstetricians and genetic counselors providing unduly negative or misleading information.

But Stephen Quake, a professor of bioengineering and applied physics at Stanford and a developer of one of the new tests, says: “It’s a gross oversimplification to assume that these tests are going to lead to the wholesale elimination of Down-syndrome births. My wife’s cousin has Down syndrome. We just celebrated his 21st birthday. He’s a wonderful person. It’s not an obvious step that you would terminate an affected pregnancy.”

But Costa points to a falloff in the financing of Down-syndrome research since the prenatal tests have been in development. Although it’s difficult to compare the numbers, money from the National Institutes of Health dropped to $16 million in 2007 from $23 million in 2003, before creeping back up to $22 million in 2011. That’s far less than the $68 million slated for cystic fibrosis, which affects an estimated 30,000 people in the United States, at most one-tenth of the 300,000 to 400,000 people who have Down.

“The geneticists expect Down syndrome to disappear,” Costa says, “so why fund treatments?”
Alan Guttmacher, director of the National Institute of Child Health and Human Development, denies that this is the calculus used by his organization. Yet he offered no clear answer when I asked him why about $3,000 in research dollars is spent by N.I.H. for every person with cystic fibrosis, compared with less than $100 for every person with Down.

“The number affected is a fair metric to use,” Guttmacher said. But, he pointed out, most of N.I.H.’s funding decisions are based on the strength of proposals coming from researchers. Advocacy groups for disorders like AIDS, autism and breast cancer have certainly played a role in their gaining increased funding, he said. And perhaps, he speculated, Down suffers from an image problem. “Part of it is that Down syndrome has been around for so long,” he said.

Representative Cathy McMorris-Rodgers, Republican of Washington, who co-founded the Congressional Down Syndrome Caucus soon after her 4-year-old son, Cole, was born with the disorder, has had little success in having money appropriated for Down research.

“I find myself wondering how N.I.H. really sets their priorities,” she told me. “I’m quite concerned that so many of the researchers in the Down-syndrome field have difficulty getting funded.” She continued, “My fear is that for some, they believe that it’s been taken care of through prenatal diagnosis.”

Even Costa has struggled to secure financing. He lives with Tyche and Daisy in a rented apartment, having never felt he had enough job security to buy a home. At his laboratory, some of his most expensive and sophisticated equipment for studying Down syndrome remains in storage, literally gathering dust for want of financing to use it. One source of his research money has been the Anna and John J. Sie Foundation, based nearby in Denver, and run by Michelle Sie Whitten, whose 8-year-old daughter has Down syndrome. Three years ago, the foundation established a research institute at the University of Colorado in Denver, where Costa works.

Plainly, though, he didn’t get into Down-syndrome research for the money. “There’s a reason why I’m doing what I’m doing,” he told me, nodding toward Tyche.

Not all parents of children with Down syndrome embrace Costa’s vision of a medical treatment targeting intelligence. In a recent survey conducted in Canada, parents were asked what they would do if there was a “cure” for their child’s Down syndrome. A surprising 27 percent said they would definitely not use it, and another 32 percent said they were unsure.

Meanwhile, the major not-for-profit advocacy groups devoted to Down syndrome spend little on research, instead preferring to lobby and offer parental support. Fresh energy has come from two relatively new groups determined to turn the situation around — Research Down Syndrome and the Down Syndrome Research and Treatment Foundation — but even they have so far succeeded in each raising only about $1 million a year, a fraction of the annual research budgets of many other disease-advocacy groups.

Behind the ambivalence toward treatments, some parents say, is a fear that increasing their children’s intelligence might change their personalities — their very identities.

“Nobody would be against giving insulin for diabetes,” said Michael Bérubé, director of the Institute for the Arts and Humanities at Pennsylvania State University and author of the 1996 book “Life as We Know It,” published five years after his second son, Jamie, was born with the disorder. “But Down syndrome isn’t diabetes or smallpox or cholera. It’s milder and more variable and more complicated. I’d be very leery of messing with the attributes Jamie has. He’s pretty fabulous. At the same time, I’m not doctrinaire. If you’re talking about a medication that allows people to function in society and hold jobs, how can you be against that?”

The parents I met whose children participated in Costa’s study expressed little of Bérubé’s ambivalence. Peggy Hinkle told me about changes she saw in her 26-year-old daughter. “When Christina was on the pills, she told me one morning about a dream she had. She gave me five full, complete sentences. Which is a very big deal. Not only that, she left the room and came back later and told me another sentence about the dream. And she started to do Jumble word puzzles in the newspaper. I don’t know if she was on the drug or on placebo, but after five weeks there was a change. Boom. That’s why we participated: to expand her horizons.”

For his part, Costa has no doubts about the work to which he has devoted the last 15 years of his life. “If you have a disorder that’s changing the function of an organ, which in this case is the brain, and you use a medication to bring the function of that organ closer to where it was meant to be from millions of years of evolution, that’s as fair as treating any other disease,” he said. “I don’t see it as any different.” If his current study is successful, Costa’s ultimate goal is to test it in youths, like Tyche, during the crucial early years of development. Costa is quick to point out that he has not offered her memantine outside the study, and he discourages other physicians from doing so until its safety and effectiveness is proved. But from his perspective as both a researcher and a father, he said: “The sooner you start, obviously, the greater would be your hopes. All I know is, the clock is ticking.”

Dan Hurley (hurleydan1@gmail.com) is the author of "Diabetes Rising: How a Rare Disease Became a Modern Pandemic, and What to Do About It."

Editor: Ilena Silverman (i.silverman-MagGroup@nytimes.com)

This article has been revised to reflect the following correction:
Correction: July 31, 2011
An earlier version of this article misidentified a neurotransmitter that Dr. Costa says is affected by the drug memantine. It is glutamate, not NMDA. That version also misstated, in one instance, Dr. Costa’s surname as Castro.

Quick update on school.

2011-08-11T11:52:00.001-07:00

Maya did very well her first day! Yay, no tears at on Monday. Tuesday the teacher and aide said she was a little pouty for about 20 seconds. They picked her up and she was just fine after that. But so far she is doing very well with drop off. She pretty much goes straight to playing. Today was the first day she actually said bye to me.

I think she was missing it yesterday (no school on Wednesdays) because when she woke up she was signing "school" the whole time I was dressing her. It was really cute.

Anyway I hope that we continue to have this great experience. So far so good...

Maya walking out of her class today.

first day back at school

2011-08-08T10:08:00.002-07:00

For the last two weeks I've been thinking Maya will be back at school soon. Yay! But today when I was getting her ready I felt a little sad. Of course I didn't show a bit of that to her. I raved to her about going to school, telling her she would meet new and old friends. I was wondering on the way there what it is about today that makes me feel sad and worried. I don't remember feeling this way last time.

This year there is a new teacher for Maya's class, and one of the aides from last year is not coming back. I suppose this is one thing that I'm a little uneasy about today. I would have to say the most prominent thing in my head is that Maya will get pushed around or hurt by the other kids that don't understand her. As much as I pride myself in keeping Maya in the mainstream world, I do feel like I am a protective mother. I've heard so many people talk about how you have to treat them (meaning a child with DS) just like all the other kids. While theoretically I agree with this idea, I also know that Maya is not like other kids. Yes, she is more alike than different, but she does have challenges that other kids will never have. The fact that Maya is not communicating with words is a big issue for me. Although I do have to rave for a second about Maya using three words (ASL) together. This last week, she started to say, on her own, "I want all done please." and "I want hat please." OK so while this is wonderful on so many levels, she is still not vocalizing words. Meaning that when she wants something she cannot tell anyone. She does not say "no" or "yes" which is so basic and necessary in communicating to other kids. What will happen when someone tries to take something away from her? Well she often tries to scratch them and if push comes to shove she will try and bite them. This really, really worries me!

I am hoping and hoping that this new therapy that we are trying, the sensory integration therapy will help her improve many of these delays. Our first session went pretty well. Maya and the therapist got along great which in my opinion is half the battle. I'm still unclear exactly how this works, but I'm sure I will learn as we go along. We also have ordered special headphones for her and are going to get her started on a listening program. This should help with her sensitivity to certain pitches and tones.

Speaking of tones and pitches, Maya really surprised me today when I dropped her off at school. First off she did really well. She walked right into her classroom. Actually, she pushed one of the parents out of the way to get in. It was too funny. She went straight to playing...didn't even hesitate one bit. She was blow drying all the little baby doll's hair and feeding them. All along the other kids were getting adjusted and started to sit around the circle together. One child in particular was screaming and crying. Immediately I thought she would react with cries also, but she actually went over to the child (who was being comforted by the teacher) and sat right in front of him. I was so amazed because her typical reaction is to scream and react in an angry way. Sometimes that girl does things that totally throw me off....In a good way.

Well I'm so excited to hear how Maya's first day went. From what I saw, I think it will be good. More updates soon.

Ready, Set, Go! (She looks mad but she was just singing.)

Maya went straight for the hairdryer and phone when she got to class. Hmmmm, wonder what that means?

After school, Maya put on a hat and watched Barney.

Very focused on her favorite purple dinosaur.

"Maya, Where have you been?"

2011-07-25T11:41:00.001-07:00

This summer has been so busy. The summer before Maya was three was just a sign of hot months passing in the desert. Now that Maya is in preschool, summer is our time to travel and kick back a little. We've certainly taken advantage of this time away from school schedules. So far we have taken four trips out of state. It's been awesome on many levels but it's been also quite exhausting. Traveling with a three year old is always an adventure. We are lucky that Maya does very well on the plane and usually doesn't have any major issues with new environments. Thank goodness for ipads and ipods because they really help us get through those long hauls.

A few firsts happened this summer, first Maya was able to spend some time with her Great-Aunt and Uncle from her Dada's side. They were visiting from India so it was a special occasion. She also went to the beach for the first time and got to splash around a bit in the water. She just loved the waves! We visited two new children's museum's, one Cali and Texas. Finally we were able to visit a wonderful park called Morgan's Wonderland, in San Antonio. This park was designed to provide a fun environment for ALL abilities of children to play and experience. Maya's favorite activity there was the water table and sensory building. We also had a chance to ride a train around the park and play on the playground. It is truly a special place for all children.

Here are a some highlights of the milestones Maya is accomplishing lately:

Maya new word is help. This is huge! One night when I was on the computer she came to me and grabbed my shirt and said, "hhhheellp". The p was mostly silent but I could hear exactly what she said. She had a little game in her hand and wanted me to open the box for her. It was so amazing to hear this word used in an appropriate manner.    Since then she's been using it often, when she needs help and just for saying it. I'm thinking the H sound is a new and interesting sound for her since sometimes she repeats it over and over almost as if she is astonished by the sound itself.

Another big change that I see in Maya is that she is starting to use two and three words (ASL) together. We have been working on this for the last three months very intensely. For a long time now we have always used "please" after we ask for something but in the last three months I started to add the word "want". So I sign to her "what you want?" or "you want barney?". It has taken a little time for her to learn the word "want". I do think it is an abstract concept, not so much an object or an action. The other curious thing is that she signs it backwards. "Want" is signed almost like you are grabbing something face up moving towards you...she signs it the other way, fingers facing her. It's hard to explain but I wonder if it is because she is mirroring the action. I'm not complaining at all about how she signs it, because the fact that she is using this word at all makes me so happy. Today I asked her, "which you want? fruit or waffle?" She signed, "want fruit please". Yes!!!   Just the other day she signed, "want ice cream please". You know she got it. =)

While all this is going on, I see that Maya is also starting to vocalize more. She isn't really saying clear words yet, but she is trying to mimic the sound. It seems to always be the sound at the end of the word, like "eeee" for please or "aaaak" for quack.   I hear her sometimes trying to sing along with barney songs. Many times I have found her reading books, not in silence anymore, not just using her ASL signs, but now using her voice. She makes expressions when she is reading the pages and tries to say the words.

I really have to hand it to Barney for changing Maya's life.   There are four shows that Maya really responds to, Signing time, Barney, Hi-5 and The fresh beat band, but Barney has really brought a lot of personality out of her. I've noticed that she has more patience in listening to the storyline now than before. She even laughs at some of the jokes now. The happiness in her eyes when she sees barney is just priceless. Thank goodness for Barney.

I have to say that all these accomplishments mean so much more than they usually do because some days I do feel a bit discouraged. For a while there it almost felt like we had hit a wall.   My theory has been that she is on the verge of a breakthrough and she is just frustrated. But the other part of me wonders if some of this has to do with the new discovering that she has sensory issues. The hardest part is that these behaviors in my mind have pushed others away from her and enable her from interacting in public settings. I often feel like she doesn't quite understand how to relate to other children. Then there is the environment that I can't control.   Whether it's too much going on around her or certain sounds that she can't stand, it sets her off and there is no going back. My poor girl becomes someone else and I feel so helpless in knowing how to calm her down. I feel so perplexed because I wonder how this little person that does so well with her therapist can fall apart when she interacts with her peers.

I do see hope coming our way though, this week I'm taking Maya to an evaluation with an occupational therapist who has done a lot of work in this area. My hope is that once Maya is evaluated we can begin the journey in dealing with these behaviors. I'm so looking forward to learning all about sensory processing.

Here are some photos from our summer adventures...

Maya's first time on the moving walkway in the airport. She loved it!

Just chilling in Cali with our friend and doggies.

Maya reading the alphabet at the San Jose Children's Museum.

Maya and her cousin watching Barney in Cali.

At the playground with her cousins. So much fun!

Doesn't she look so big?!

Maya's first time at the beach, Newport Beach Cali.

She loved the waves!

Looking cool on the beach.

Playing and dancing on the playground.

Our first time at Morgan's Wonderland.

The water station was one of Maya's favorite activities.

Train ride with Grandma.

wordless wednesday: Maya is growing!

2011-07-06T00:01:00.002-07:00

We are having such a busy summer I haven't been able to write very much lately. Thought I'd post this quick wordless wednesday shot, not very wordless since I'm writing this, but oh well. I'm in the middle of writing a long needed update and will post that soon. Until then, enjoy this snap I took of Maya at the hardware store on fourth of July. When I saw this photo I just thought she looked so tall. She's growing right before my eyes.

I hope everyone is having a fabulous summer! Take care!

Wordless Wednesday

2011-05-25T18:22:00.005-07:00

sensory issues

2011-05-13T23:40:00.002-07:00

So today I had an interesting conversation with Maya's preschool teacher. We started talking about the adaptive chairs that they just got for some of the students (Maya being one of them). She said the OT ordered them. And on that subject somehow we go onto the fact that Maya has sensory issues. Honestly I felt so baffled that no one has addressed this issue with me before. I mean yes, I know that Maya doesn't like loud noises like children crying or screaming, the vacuum cleaner or when you blow your nose....I chalked it up to the tubes in her ears (that's when it seemed to start). I didn't realize this effected other parts of her life.

This is the reason why Maya loves to spin in circles. This is the reason why she shakes her head back and forth uncontrollably sometimes...this is the reason why she often can't sit still anymore.

One of the aides showed me how she calms Maya down when she gets into circle time. It was amazing to see the aide sit her down and just by giving pressure to her arms and hands, Maya calmed down and quietly sat in her lap. She didn't wiggly or shake her head...in fact she held out her arms like she wanted more. She had a look on her face that was so peaceful. It was amazing. The teacher went on to say that the OT is looking into getting Maya a weighted vest so she can wear it when she gets wiggly.

I honestly know nothing about Sensory Processing Disorder (sometimes called "sensory integration" or SI). But I sure am going to be researching more about this now. In many ways this fills in the blanks for me and my feelings of Maya not be able to play and interact with her friends appropriately. It gives me some peace of mind because now I know there is a name to these actions. I am so grateful that the teacher and aides are able to work with her in the classroom. If no one ever told me about this then I would probably still be wondering why my sweetie pie is acting this way.

Here are a few sites I found so far that seem to define SPD and it's symptoms. If any of you out there have any experience with this I would love to hear from you. I have so many questions about this subject now.

The Sensory Processing Disorder Foundation: http://www.spdfoundation.net/about-sensory-processing-disorder.html

Sensory Processing Disorder Checklist: http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html

Bright Tots http://www.brighttots.com/sensory_integration

wordless wednesday: a new experience

2011-05-11T13:54:00.000-07:00

my little genius

2011-04-18T16:08:00.000-07:00

A few weeks ago I posted about how Maya was working with her speech therapist on matching pictures to a picture board. This last week I decided to take out the See and Learn Language and Reading materials that I purchased a while back. By the way this is all free to download from their website. How cool is that!

I could make up some excuse about how busy I am or how I thought Maya was not quite ready for this activity, but I really have no excuse except my laziness. Maya has over 100 signs, she has been working with flash cards for a long time and she loves reading/looking at books. I know these are all parts of the foundation in learning to read.

So on Friday I took out the 50 sight/picture cards from the first word pictures, packet. A photo of an object is on one side and the word is on the other side (IE: spoon, apple, cup, brush...etc.). As I handed the cards to her she started to sign the word without me even saying a thing. She automatically told me what was on the card. This is actually one of the first activities you can to do with the cards. It was as if she knew what was coming.

Next I took out the 15 picture boards from the packet. Quickly I placed the first board on the floor. I handed Maya the little picture card so she could match it to one of the four photos on the board. I have to tell you that I was so freaking impressed with my daughter. Wow! First off she was matching the picture card with the boards faster than I could find the next card, she did all of them and only missed two, and she even signed the word to me as I handed them to her.

In more ways than one, this exercise blew me away. I was so proud of her work but at the same time it made me wonder, "Do I not give her enough credit?". Because she isn't speaking maybe I forget that Maya knows so much more than she can communicate. She CAN understand these kind of tasks. Just because she isn't talking doesn't mean she can't put two and two together. I tell her everyday how she is smart...and now I have to tell myself that too. She is capable of learning just like everyone else, she just needs it to be shown to her in a different way than most.

Now more than ever she seems thirsty to learn and ready to try anything new. My job is to challenge her more so she can excel. Next we will work on the second packet, first written words. I can't wait to start and tell you all about it.

matching action images

Wordless Wednesday

2011-04-13T15:08:00.002-07:00

Wordless Wednesday: gelato heaven

2011-04-06T21:32:00.000-07:00

Change is good.

2011-04-02T08:17:00.000-07:00

Today is the last day of Maya's second week at school. It may be my imagination but I already see so much progress. I'm happy to report that she hasn't cried very much during this whole experience. The first week seemed to be filled with a little crying during class and one big cry when I was dropping her off on Friday, other than that she has been quite happy to go to school.

To my surprise I wasn't in tears either. I didn't worry as much as I thought I would when I saw her cry, or when I left her with total strangers. I think in a way I had made my mind up that this was going to be a good experience...maybe with a few bumps along the way but nothing out of the ordinary. I also want to be strong for her. When I think about how I grew up I think that fear was instilled in me through the action of my parents. By no fault of their own of course, but still I was sent a signal to fear everything that requires change. I don't want Maya to have that in her life. I want her to welcome change and different experiences. I do truly believe that I have to be a role model for her, not just tell her that it's going to be okay but really show her by the way I react to things.

Thursday, last week, when I went to drop Maya off she was fine, but when I went to pick her up she was crying even before I got there. One of the aides was holding her and brought her to me. She said she was really tired for the last half hour and kept signing "all done" and saying buh-bye. I thought to myself, well at least she's able to communicate what she wants. As soon as I held her she stopped crying.

Half an hour later her speech therapist for her session. She brought over a new activity, a matching board. From Maya's evaluation I knew that Maya could match up to two pictures but she had never done any of this work at home. So when the therapist brought out the matching board and started to give her the little cards to match, we were both stunned to see that she matched 6 in a row. Maya was so pleased with herself, clapping and exclaiming, yay! She continued to another board and matched all of those. With hardly any prompting Maya did this all on her own. It was so cute the way she held the little picture in her hand and looked at the board, back and forth...trying to decide where it went. She was making decisions right in front of my eyes. It was a good day. And the next day was even better.

This week, Maya matched 5 boards in a row.


Yay!!!!!

On Friday, Maya fed herself toast in the morning, not throwing it once. Wow!!!! That was a first. I'm contributing this to the fact that at school they eat snacks together. Perhaps she is seeing that other kids don't throw their food on the floor. Perhaps she doesn't get the food back if it is thrown. Whatever the case it is starting to click in.

Maya helps put on the butter.

Eating toast all on her own.

And last but not least, Friday at music therapy, only one week of preschool under her belt, Maya started to vocalize more than ever during her session. A comment was made by the director, as she listened from her office, that she is singing so well.

Saying "eeeee" for the word "me".

This week, Maya didn't cry once during class. Now she takes off, almost running into the classroom. One day she went straight for the rug and sat there waiting for circle time, she was ready to start her day. She is flourishing in more ways than I can count and it's only been two weeks. Yes, change is good.

Off to school she goes...

2011-03-28T11:51:00.001-07:00

On March 21st, World Down Syndrome day, Maya had her first day at school. We were all so excited, I think Maya included. The night before, Maya and I tossed and turned, but we were up on time and ready to go for her first day of school.

When Maya was just an infant I started thinking about preschool. I've always wondered if 3 was too early of an age to send a child to school. I mean 3 years seems to be a young age to someone who has never been around kids. Now that I have had the privilege to be around Maya for 3 solid years, I see that it's just the right age to start school.

As much as I like to think that I've stimulated Maya's mind and body with all her therapies and being in a mommies group that meets 3-4 times a week for play dates, story times, etc. Nothing can replace a setting like school. It may be my imagination but I already see so much progress from Maya. More about that later....for now here's a peek into Maya's first day at school.

Maya ready for school!

This backpack is almost as big as Maya. =)

Dada carries Maya to her classroom.


As soon as we put her down Maya went into the classroom and started to play in the kitchen area.

Maya with one of her aides. When we said goodbye to her she looked at me and then went back to playing. A good start to her first day at school. Yay!

Maya looking a little dazed at the end class. Her other aide brings her over.

Very, very happy when she saw Dada.

She looks tired, but she got her second wind when she got home.

Maya is 3!

2011-03-18T22:19:00.001-07:00

Whooohooo! My little baby is 3! What can I say, life just takes a hold of you when you have a kid and whips you around like a roller coaster...up and down, twisting all around, screaming in happiness and giggles, then you get at the end. Let's go again! I love the fact that Maya has changed my life. She is the center of my world. It's the truth. I can't say I regret a thing about it.

Monday is Maya's big day, on World Down Syndrome Day, she will go to preschool. I am so excited and yes a little nervous. This is it. She will get to be in the world without her mama to protect her. After meeting her teacher I am put at ease that she is in the right place. I can't wait to see how it goes.

Here are a few snaps of Maya's big party.

What's up in the world of Maya?

2011-03-01T16:53:00.004-07:00

It's been too long since I've written. I know, I know, I say that all the time. Ha! Well life just keeps on moving for us. Sometimes I feel like time is ticking so slowly...and then low and behold it's March! Wow! Maya's 3rd birthday is quickly approaching and this time I feel a little behind in my party preparations. I always make a little slide show of her year gone by, but this year, well we will see if it happens.

What's going on in the world of Maya? So glad you asked. Well, when I say that I feel like time has been moving slow, that's because Maya and I have both been sick. First off I've been battling the sickies since Nov. I'm still trying to figure out what's going on. Going to different doctors to see what's up. On top of that, right around V-day I caught the flu, wholly moley! I was literally down for the count. In bed for three days straight, then dragging the rest of the week. Later in the week, Maya caught a cold. Poor thing had stuffy/snotty nose for almost two weeks.

It's been challenging to say the least. All of a sudden my darling little angel is cranky as ever and screams blood murder if she is not getting her way. Poor thing was bored of being inside and not being able to go out and play with her friends. It's times like this when I wish she could speak and tell me what is going on. Although she has many ASL signs, she reverted to arching her back and whining instead of using them.

Thank goodness that's over with. And thank goodness for Barney! Yes, Barney saved the days and I suppose Maya is now hooked. But that's perfectly Ok with me. The way her face lights up when I ask if she wants to watch Barney is just priceless.

Meanwhile Maya is still moving towards becoming 3 and continues to grow and chance right in front of my eyes. She is developing a sense of humor and is starting to get ideas in her head. She wants to put on her tutu and brings the box over to me so I can help her. She swipes my oven mitt from the counter, puts it on and dancing around the room. She makes her way to the place where I have the bubbles and reaches as far as she can to get them. (Actually she is really getting good and blowing bubbles. Whoohoo!)

One of the greatest things I've heard is her little voice, trying, quietly as it might be, to recite the ABC song. She signs the letters at the same time and makes the sounds best she can. Mostly "Eee" is the best sound she can make, but sometimes I can almost hear an "Mmm" sound. I would love to be able to record this on video but she does it so quickly that I just have to listen and enjoy the moment.

These moments are fleeting I realize so I just try to keep my eyes open and absorb those precious moments as much as I can. Life is quick...and without sounding morbid, you just never know when it's gonna be over. Enough said.

Here we are.

Wordless Wednesday: Light and and her shadow

2011-02-23T16:12:00.000-07:00

wordless wednesday: a star is born

2011-02-09T10:26:00.002-07:00

pre-preschool jitters

2011-02-03T15:31:00.002-07:00

Yeah, it's strange to admit it but I guess I'm starting to feel nervous about Maya going off to school. On the surface I'm excited for her new adventure. I know it will be good for her socially and help her excel. I feel as though I've been slacking on the teaching department. She needs this jump start for sure. There are so many pros to her going to school...and then deep down (it is starting to come to the surface) I am afraid.

I'm sure all moms go through this, having to let go of their little birds. There are so many things that go through my mind. Things that I would have never thought of before. Like the fact that she could get hurt. She could get pushed around, since she is small for her age and she is still unsteady on her feet.

This will be the first time I am leaving my child in someone else's care, a stranger in a way, not at my home where I can basically control the setting. I hate to admit it but as much as I've tried I have been one of those mom's who have shadowed their child. I think most of the time I've had to do such things to ensure that my daughter did not bite someone or pull their hair. The fact that she doesn't speak and only uses signs (now less and less) worries me the most. How will she communicate? How will she be able to defend herself or ask for something she wants. When I think about this I just shake my head. What the hell did I get myself into?! I knew motherhood would be hard but I hate this feeling that I will not be able to protect my child.

All the more so, this brings up the feelings about her having Down Syndrome. I try not to think much about it because she has done so well. But now it's in the forefront. She struggles more in interacting with the other kids, she doesn't always understand what is going on and gets frustrated...she can't tell them what she is thinking. I don't want to think about the future because what matters is now, but there are fears I have for my daughter. I worry about her future struggles. It makes me sad.

Then on the flip side I say to myself, it's only preschool! It's only going to be 2 1/2 hours for four days a week. it's not like she will be gone for long. And I know Maya does very well in a class setting, she doesn't mind getting instruction from a teacher. She enjoys story time and she loves it when we go to music and gym class. I know this will be good. And in the end it is what it is. I have a daughter with Down Syndrome and this is my life. This is her life. We are very blessed to be in a good place. She is lucky to have this opportunity to go to preschool. I didn't get that chance when I was a kid.

I'm sure I'll keep writing about these thoughts as I go through them. So far I've enjoyed reading about other mom's experiences with the first day of school. So many kiddos do cry at first, but they eventually work through it and enjoy going to school. It gives me hope for Maya and for myself.

“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.”
-Mary Anne Radmacher

wordless wednesday: I said, smile and she smiled.

2011-02-02T16:09:00.001-07:00

Wordless Wednesday: Eating a snack and watching Barney

2011-01-19T16:36:00.002-07:00

Another trip to the aquarium and farewell to maya's best buds

2011-01-18T12:56:00.004-07:00

Recently we went to the aquarium with our friends and their kiddos. It was great seeing the kids enjoying the fish and the environment. The little aquarium is just the right size to entertain but not overwhelm Maya. I'm so glad that she is getting curious about her surroundings.

Our long time friend's have twins which are two months younger than Maya. Its been really wonderful having them around. I've been able to see them grow so much in just six months. The twins, a girl and a boy, have really taken to Maya. They always call to her to join them in whatever they are doing and give her lots of hugs. Even though Maya isn't quite at the same level they love hanging out with her. Their friendship has grown as did mine with their mother. We've enjoyed many outing together. I'm sad that our friends will be out of the country for the next six months but we look forward to their return.

Below are a few precious moments from our last visits together.

My little climber

2011-01-07T15:35:00.000-07:00

I never thought it would happen but yes, my little girl is becoming a climber. It happened just out of the blue. Last week it was my grandmother's hope chest, later in the week it was the fireplace ledge and a now it's the foot stool in the living room. These are the places that I find my daughter, when I'm not looking. Part of me is amazed that she would even consider such actions...the other part of me loves the thrill of finding her perched on a place I do not expect. Luckily she knows how to get down...so far. I just keep my eye on her in case she gets too adventurous...my little daredevil.

Like a little kitty cat, she's admiring the outside.

She decided that this stool would be the best place to read her books.

Bubbles, fishes and Olivia, oh my!

2010-12-29T22:49:00.001-07:00

These last few weeks have been hard and good at the same time. I've been out of commission with a cold off and on for almost two months. It's slowed me down but it hasn't to slowed Maya down one bit. Although I feel sad that I haven't been able to take her out to our playgroup as much as I would like she doesn't seem to be phased by this. I'm glad.

So here are some awesome things that have been going on these last few weeks.

I know I told you all that Maya was on the verge of blowing bubbles...well she's done it!!! It wasn't long after that pre-bubble post that she started to blow out of her mouth and make little bubbles appear. Sooooo exciting!

The other day we went to the aquarium and I noticed that Maya was actually looking at the fish. Usually she's not so interested and mostly just likes the tide pool area, where the water crashes in every few seconds. But that day she was enjoying all the fishies. She spend a lot of time sitting in a little viewing area for the sting rays and sharks. I don't know if it was the fish or just the environment but she started to vocalize a lot. I like to think she was singing to the fish. Her interest in these objects, moving objects that are outside of her immediate space, is a big step. She understands flash cards of fish, she understands books with photos of the animals at the zoo...but to see them in person is another concept all together.

So a few weeks ago Maya ventured into the little Olivia dress up box I bought a couple of months ago. A tutu, pretend ballet slippers, and leggings have been a hit with Maya lately. Every day Maya takes down the cardboard box and usually asks for help opening it. Then she proceeds to stick out her legs so I can put the leggings on. Sometimes she'll go to the mirror and try and put on the safari hat that also comes in the box. Other times she just prances around the house with the little tutu on. It's rather cute if I say so myself.

Before Christmas I went through Maya's toys with the idea of donating them to children in need. It was good for me to go through these objects. I could really see how far she has come. Of course there are a few toys that she has outgrown that I couldn't quite let go of just yet. I suppose they remind me of the times when she accomplished a huge goal and part of me doesn't want to forget the amazing strides she has made.

Yep, my little girl is growing up! As always, I can't wait to see what she does next.

Wordless Wednesday: A Santa Moment

2010-12-15T22:05:00.000-07:00

Thanks to D. Sinha and J. Ciminara

tooting maya's horn

2010-12-03T13:48:00.101-07:00

For a long time I tried to teach Maya to blow bubbles. I suppose I started way to early because she really wasn't into it at all. Soon after I let it go and didn't push it any further, still wondering when I was supposed to try again.

Here and there when Maya gets sick, I try to encourage her to blow her nose. Most of the time she just looks at me with a straight face. I imagine she may be saying, "Hhhmmm, what the heck is mama doing?"

She never has tried to imitate my actions, not once.

Mid November I caught a chest cold and we ended up spending a lot of time at home together. I always feel bad that I'm not getting Maya out with the other kids. Especially now I think she needs the exercise since she is walking. She did pretty well the whole week though. I feel very lucky because she can pretty much entertain herself with the mirror, her toys and music.

One day I found her playing in the front room. The sun was shining down on her through the big window. The room felt like it was glowing and I loved watching her silently entertain herself. First she was playing with her puppets and then she started to empty out the toy bucket. She was going through everything in that box, every single toy came out one at a time. She inspected each item carefully, tested it out and then moved on to the next toy. It was really interesting seeing her train of thought.

exploring her toy box

When she came to the horn (the horn we have used during speech therapy), she looked at it and then put it up right against her lips. She hadn't played with it for a very long time, but she knew what to do. She didn't blow with her mouth but with her nose.

trying to give the horn a blow

It was the best little blowing sound I have ever heard! This is the moment I thought to myself, this is the moment when she has put it all together. This was a step towards another milestone. Sometimes they don't seem like much but they are there. When she blows that horn for the first time or blows a bubble, this was the moment that led up to the big event.

And when the horn didn't make a sound, Maya decided to make her own tooting noise. "aaaaaahhh" she said. Then she was done and crawled into the box to get the next toy out.

making her own noise

Wordless Wednesday: a first time experience

2010-12-01T13:56:00.000-07:00

something amazing

2010-11-04T15:24:00.000-07:00

Something amazing happened the other day. I noticed Maya at the frig playing with her Leap Frog Animal farm. She likes to push the button and make it sing songs. But this time I noticed something different. She was moving the little magnet animals around and placing them in the slots. She was mixing and matching the animals and making the toy sing a funny song to her. This was the first time I noticed that she was doing this kind of work. I could tell that she was a little frustrated at not being able to get the right part of the animal in the slot, but she was trying and succeeding the majority of the time. I continue to be surprised by these little amazing things she shows me. Brava, Maya!

Wordless Wednesday: music therapy

2010-11-03T15:27:00.001-07:00

31 for 21, Day 31: Halloween 2010

2010-10-31T22:48:00.000-07:00

It was a good day. Halloween 2010. As a family we met some of our friends to trick or treat together. As always it's an adventure with a 2 1/2 year old. Maya wasn't into it this year. But she was much better than last year. It was great hanging out with our friends, going up and down the street and meeting everyone. I am living vicariously though Maya since my Halloween years weren't that wonderful. Really I feel so lucky to have this experience. I loved watching our friend's kids walking up to the door and saying in that cute 2 year old voice, "twick or tweet". I couldn't help but think, one day Maya will be doing that.

I have to mention that I am so proud of hubby for putting on a brave face and venturous out with us. He didn't complain once! I often have to remind myself that Halloween is an American thing. It may seem bizarre to people from other countries, getting dressed up in strange outfits and knocking on people's doors to get candy. But I think hubby is getting used to the concept, and I dare say may even consider dressing up for Halloween...maybe next year? Well anyway, a girl can dream.

Today is the last day of October, the last day of 31 for 21. Whoohoo, I did it! It was certainly a challenge. I hope you enjoyed it as much as I did. Please keep checking in, I will keep posting although maybe not everyday. oxo

Getting ready.

off we go!

buzz, buzz, buzz.

happy bumble bee and her mama.

resting after trick or treating.

two bumble bees and a lady bug.

2010 loot, including a stuffed owl from our sweet neighbor.

31 for 21, Day 30: Buddy Walk

2010-10-30T16:40:00.000-07:00

This morning was both the Sharing Down Syndrome's Buddy Walk and DS Network's Step up for Down Syndrome walk. Both organizations are here in the valley and both do their major fundraising events around the same time. It's unfortunate that they both pretty much fall on the same day. But it is what it is. And so we just try our best to support the work they do.

We had to make a decision on which we would go to this year and the deciding factor was nap time. The Buddy walk was earlier and better coincided with Maya's schedule. Although we did major fundraising for the Step Up walk, it just wasn't possible for us to go to it. By the way, I'm happy to report that Maya and her dada are both tucked away and sleeping well. I'm sure they are both exhausted from all the activities.

Although we didn't get to see a ton of people we knew we did get so see some of our peeps. The coolest thing was when a mom came over to us and said, "Is that Maya?". I was thinking, Wow, Maya is already famous. She's a mom that I am friends with via facebook. I am so glad she recognized Maya. She and her husband have two beautiful children, one blessed with a little something extra . It was so wonderful to meet them in person. We are automatic friends because of our little one's extra chromie. I do feel very lucky to be a part of it all.

Maya checking out Barney

The walk starts. Maya in her new wagon.

Waving to her peeps.

Getting a ride.

After our long walk it's time for ice cream!

A very happy Maya.

A hug for a new friend.

Sweet pea!

Hanging out with our friends.

Sandy and Maya.


Making some music.

Maya and me chillin'.

More huggies!

31 for 21, Day 29: Book Signing

2010-10-29T21:39:00.000-07:00

Maya and I went to our first book signing together. I was so excited to have Jagatjoti Khalsa sign our I'm Down with You, book! Maya was really very patient the whole time and she was hugging quite a few people tonight. We hung out in the kids section after and Maya found a shaker she couldn't let go of. It was really cute the way she was walking around the entire bookstore with that shaker.

If you haven't been able to check this book out I highly recommend it. I posted earlier about the documentary that Jagatjoti is working on, but the book is available now. When I first opened the book I was amazed by the stunning photography. All those gorgeous faces so elegantly captured. I haven't been able to read any of the text yet but I'm sure it is well written also.

Please do check out his site, http://www.imdownwithyou.com/

Jagatjoti signing Maya's book.

Maya says she's gonna me in the next book. =)

Hanging out.

Thanks to Lily for loaning her pom pom. Maya loved it.

31 for 21, Day 28: park adventures

2010-10-28T22:11:00.000-07:00

We went to the railroad park again today. I am really loving this park, it has a train, carousal, snack bar and a huge playground. We met up with some other mom's. I'm super excited that Maya is starting to be a little more lovable. It's always so cute to see her giving hugs. Today she surprised me by not only hugging her little friends but a couple of the moms too. Now Maya isn't only known for pulling hair, she is also known for hugging everyone too.

Now that it is cooling down I'm looking forward to getting out to the park and exploring different environments. I love encouraging Maya to try different things. Here are some photos of our adventure today.

Hello friend!

First time on this slide. Ready to go...

weeeeeeee

whoooooa

So proud of me!

Hug for L's mom.

Found a leave in the sand.

Next stop, mouth.

Guilty as charged.

Maya giving L another hug.

Blurry but I love their expressions.

Happy playing together.

31 for 21, Day 27: Wordless Wednesday

2010-10-27T21:35:00.000-07:00

31 for 21, Day 26: A hard day's work

2010-10-26T14:44:00.003-07:00

Oct 1st I took these photos of Maya helping me with the laundry. I thought they were too cute not to share. She has been very inquisitive lately and seems very interested in helping. When we are getting ready to leave she often comes over to us and tries to help us put our shoes on. She also loves to push the button to close the garage door when we come home. She won't leave the area until the garage door is all the way down. It's really cute to watch. These are the little things that I love to notice about Maya's development. Hope you enjoy these photos of Maya doing her own laundry.

The whole time she wouldn't let go of her little telescope.

Hard worker.

Almost done.

One last check before finishing.

31 for 21, Day 24: the light of my life

2010-10-25T22:49:00.001-07:00

Yeah, I'm tired, it's been a long day. I wanted to write about the fund-raising I'm doing in honor of Maya...But I'm ready to crash. So here's the link and a photo I took of Maya last week at music therapy. Even though it was taken with my phone I love the lighting. She is the light of my life is all I can think of when I see this photo.

http://www.firstgiving.com/dreammaya

31 for 21, Day 24: Pumpkin patch revised

2010-10-24T22:20:00.000-07:00

Towards the end of our lazy day we headed down to the corner to check out the pumpkin patch. Keep it simple, a great motto to live by. We kept our visit short and sweet. Here are some photos of today's pumpkin adventure.

exploring

Maya enjoyed throwing these like a ball.

We ran into a family friend while we were there.

high fiving!

Maya and Dada photographing themselves on the iphone.

31 for 21, Day 23: pumpkin patch adventure

2010-10-23T22:26:00.001-07:00

We went to the pumpkin patch today. Hoping for a great experience, a new experience and then we get there. The place was awesome, it had everything, a train ride, a hay ride, a pumpkin patch, petting zoo, sunflower patch...the list goes on. But you know, Maya just didn't care about all these things. She was tired and ready for her nap. She didn't like the uneven ground, and the sun. It was evident that she wasn't going to last long. But I was hoping to get to pumpkin patch and the petting zoo at least. We made it to one of the tiny pumpkin patches and then she exploded. She was done and she was telling us via her screams and tears. So we decided to just bite the bullet and go home. Not one minute later she was asleep in her car seat. Poor thing was just pooped.

Today I learned that I can't plan too much for Maya. She needs her down time. She needs to be comfortable and she needs to be able to play in a place she can handle.

Tomorrow we will try the pumpkin patch down the street. The one at the church just four minutes away by foot. There only pumpkins reside. We will have a family day, no elaborate plans or major outings. I look forward to a happier Maya because to be honest when she isn't happy, I can't be either.

Taken by dada. A happy moment.

31 for 21, Day 22: More intellectually disabled go to college

2010-10-22T15:16:00.003-07:00

Love this article! Thanks to all my friends that posted it on FB! I really think this hits the spot for me. I think it's wonderful that people are seeing that a degree doesn't have to be the end goal for higher education, it is after all about learning. The experience of going to college can change a person immensely. Did I ever tell you that my SAT scores sucked? I was just lucky enough to get accepted to an art school that didn't care that I didn't know much about math and science. They knew I had potential in other areas and because of that opportunity my life was changed forever. For Maya she may not be strong in some areas but I'm sure there will be many things that she will do amazingly. I hope that we continue on this path and that many more colleges will be open to having our children in their community.

http://www.theautismnews.com/2010/10/19/more-intellectually-disabled-youths-go-to-college/

More intellectually disabled go to college

Warrensburg, Mo. – Zach Neff is all high-fives as he walks through his college campus in western Missouri. The 27-year-old with Down syndrome hugs most everybody, repeatedly. He tells teachers he loves them.

“I told Zach we are putting him on a hug diet — one to say hello and one to say goodbye,” said Joyce Downing, who helped start a new program at the University of Central Missouri that serves students with disabilities.

The hope is that polishing up on social skills, like cutting back on the hugs, living in residence halls and going to classes with non-disabled classmates will help students like Neff be more independent and get better jobs.

In years past, college life was largely off-limits for students with such disabilities, but that’s no longer the case. Students with Down syndrome, autism and other conditions that can result in intellectual disabilities are leaving high school more academically prepared than ever and ready for the next step: college.

Eight years ago, disability advocates were able to find only four programs on university campuses that allowed students with intellectual disabilities to experience college life with extra help from mentors and tutors.

As of last year, there were more than 250 spread across more than three dozen states and two Canadian provinces, said Debra Hart, head of Think College at the Institute for Community Inclusion at the University of Massachusetts Boston, which provides services to people with disabilities.

That growth is partly because of an increasing demand for higher education for these students and there are new federal funds for such programs.

The federal rules that took effect this fall allow students with intellectual disabilities to receive grants and work-study money. Because details on the rules are still being worked out, the earliest students could have the money is next year. Hart and others expect the funds to prompt the creation of even more programs.

“There is a whole generation of young people who have grown up under the Individuals with Disabilities Education Act, and the Americans with Disabilities Act, and to them it (college) is the logical next step,” Hart said.

The college programs for these students vary. Generally the aim is to support the students as they take regular classes with non-disabled students. Professors sometimes are advised to modify the integrated classes by doing things like shifting away from a format that relies entirely on lectures and adding more projects in which students can work in groups.

One program in Idaho offers classes in drama, art and sign language. Students on other campuses can improve their computer skills or take child development classes.

Sometimes they’re paired with non-disabled students and advocates say the educational coaches, mentors and tutors who help them often are studying to become special education teachers or social workers and learn from the experience too.

Disability advocates say only a small percentage of these students will receive degrees, but that the programs help them get better jobs.

Historically, adults with intellectual disabilities have been restricted primarily to jobs in fast food restaurants, cleaning or in so-called “sheltered workshops,” where they work alongside other disabled people and often earn below-minimum wages, said Madeleine Will, vice president of the National Down Syndrome Society.

With additional training, Hart said participa
nts can go on to do everything from being a librarian’s assistants to data-entry work in an office.

Much remains to be learned about what type of program works best, but Hart said that will likely change.

Besides allowing for federal financial aid for these programs, Congress also has appropriated $10.56 million to develop 27 model projects to identify successful approaches.

The infusion of federal money has generated some criticism. Conservative commentator Charlotte Allen said it’s a waste to spend federal tax dollars on the programs and insisted that calling them college dilutes the meaning of college.

“It’s a kind of fantasy,” said Allen, a contributing editor for Minding the Campus, a publication of the fiscally conservative Manhattan Institute. “It may make intellectually disabled people feel better, but is that what college is supposed to be all about?”

Oftentimes students with these disabilities stop their formal education when they finish high school, which is usually around the age of 21. Some districts have a partnership with colleges under which the district pays for their 18- to 21-year-old students to take higher education classes. In other cases, college costs are paid for by the parents.

Their children previously haven’t been eligible for grants and work study money because they generally weren’t seeking a degree and wouldn’t have been admitted to college through the typical process.

These programs look “at higher education for what it’s purpose in our community and our culture is — to provide opportunities for learning,” said Meg Grigal, a researcher who works with Hart.

Back at the University of Central Missouri, Neff and another participant in the program for students with developmental issues, Gabe Savage, laugh with friends during lunch in their residence hall cafeteria.

Savage, a 26-year-old from Kansas City, is grateful for it all — new friends, the chance to try out for a school play, brush up on his computer skills and even take a bowling class with non-disabled students looking to earn a physical education credit.

“It’s an answer to my prayer that I am here,” he said. “I always wanted to do this.”

Source: http://www.foxnews.com/health/2010/10/18/intellectually-disabled-youths-college

Please share this news with friends, family and also with your contact list on Twitter, Facebook and MySpace.

31 for 21, Day 21: a fun day at the park

2010-10-21T22:59:00.002-07:00

Maya had a blast today at the park with her friends. We rode the train twice, the carousel once, had a snack and then went to the playground. It was a gorgeous day today, the first one in a long time. Finally we could go outside and not burn.

The cutest thing happened when we got to the park. When we found out friends, Maya walked directly to L and gave him a big hug. I've really never seen her do that straight away. It was so sweet. Of course I didn't have my camera out at the time, but later I did get a few snaps of them hugging again.

While we waited for the train, Maya practiced going down the steps and walking around. She was fascinated with her shadow and danced and signed as she walked. She liked the train and carousel but not much as the other kids. Most of the time it looked like she was just taking it all in.

The best part was when it was just Maya and I. Before we headed home we stopped off at the swing set. Maya's joy just makes my heart melt. She giggles like crazy and smiles all because I push her on the swing. It was our little private time to just be together. Those are the best moments of my life.

31 for 21, Day 20: Wordless Wednesday

2010-10-20T14:21:00.000-07:00

31 for 21, Day 19: Maya and her friends

2010-10-19T16:23:00.007-07:00

This week we started a little workshop at the library which gives children from 0-5 the opportunity to socialize with each other. Basically there are 10 stations of toys set up in the room and the kids play on their own and together. When we took this workshop earlier this year Maya did not have a good reaction to the space. It does get pretty noisy with all those kids and parents in the room. I think there was just too much going on. She seemed very irritated and would make her growling noises the whole time. This year I noticed that she was not so upset by the noise and now that she is walking she really seemed to get around to all the stations. The music section, kitchen and the tunnel were her favorite places to roam.

Like all other toddlers Maya is learning to share and play nicely with others. She seems to be following other's footsteps in grabbing and fighting over toys. In the last few months though I have really seen that Maya is interacting with her buddies more often. I do feel like I have to keep an eye out for what she is doing at all times. It only takes one second and then she might have her mouth on someone's arm. Yikes!!! I try my hardest to give her space, to let things go naturally but I do worry that kids a little older/larger will push her around. I have seen it happen.

There have been some really nice moments in the last two months that I've been able to witness. Like the time she fed her friend cheerios just out of the blue and the time she actually played nicely with a friend in the little kitchen at a play center. I often repeat to Maya that these are her friends and I think she has finally picked up the cue. Now when she sees a little buddy she will sign the word "friend" and then the word "nice" all by herself. I think it is sort of stuck in her head that those two words go together.

Making pizza together

team work

Laughing and Dancing

Sharing Cheerios

Watching Signing Time together

Playing nice

31 for 21, Day 18: pumpkin patch petting zoo

2010-10-18T16:20:00.000-07:00

Here are a few snaps of Maya petting the mini horse at the pumpkin patch. We didn't stay long because it was just too hot out by the time we got there. Maya loved the petting zoo and really didn't want to leave. She has no fear when it comes to animals. She was trying to pet the chickens that were running around. And she kept trying to break into the cage where the goats were. It was really funny to watch. Hopefully next weekend it will cool off so we can actually get some shots of her in a pumpkin patch. =)

31 for 21, Day 17: haircut

2010-10-17T14:01:00.001-07:00

Maya recently got a long needed haircut. I think I've written before about how hard haircuts can be for us. Many times I procrastinate because of the stress it causes us both. Although I have to say the last few times we have gone, Maya has been doing very well.

My technique? I've been using Maya's itouch to distract her from what's going on. First it was Signing Time and now it seems that the Wheels on the Bus video seems to work. The only time she fusses or cries is when they spray water on her head. So far so good...

31 for 21, Day 16: Techie Gurl

2010-10-16T22:41:00.002-07:00

Lately I've noticed that Maya is becoming more and more techie. We are generally pretty computer savvy people since both hubby and I have made our living using a computer. I didn't use a computer until I was in my third year in undergrad. Maya on the other hand has been exposed to using an itouch, ipad and a laptop since she was able to sit up.

When Maya was younger (12-15 months) we had a hard time teaching her how to use her fingers, how to point and how to push buttons. One night we were fooling around with the iphone and sure enough she started to point her index finger to push the virtual buttons. It was a breakthrough! I just can't knock technology when I think about that moment. There are so many ways that we use the ipad, from watching Signing Time videos to learning to count (Toddler Counting). Honestly the list goes on and on.

Our speech therapist also bought an ipad and uses it with many of her clients. She loves finding new apps for us to encourage Maya to speak. This week she was showing us a new app that uses a animated cat (Talking Tom) to repeat anything you say. Maya actually was trying to vocalize because of it. I literally was laughing and crying at the same time. It was so much fun!

Below is a video of Maya on that very evening when she discovered cause and effect using her little index finger.

Counting, Oct 16, 2010

31 for 21, Day 15: growing up

2010-10-15T14:08:00.000-07:00

Did I mention that Maya has four teeth coming in right now? Wow, this poor girl has had teeth coming in since we went to Cali back at the end of August. I counted four teeth for sure with a possibility of a fifth in the back. It was hard to see and I dare not stick my finger in her mouth. That girl has shark teeth!

Unfortunately the teething process has been slow and sporadic. She will go for long periods with nothing and then all of a sudden she has four teeth coming in. It takes forever for a tooth to appear. She really has been a sport about it though. Mostly she just chews on everything, including her own hand at times.

After these come in she will have a total of fourteen. Yay for Maya! When she smiles I see those pearly whites and I just think my little girl is growing up. Check these photos out...

May 22, 2009

Oct 06, 2010

31 for 21, Day 14: 2 years and 7 months

2010-10-14T22:19:00.001-07:00

Yesterday was Maya's 2 year and 7 month birthday. I used to count every month when Maya was an infant and write a little newsletter to all our family and friends. The fact that Maya was a bit of a surprise for us, brought everyone together. Everyone wanted to know how she was doing. Over time life and it's busyness have taken hold of our lives. So you can imagine that newsletters and so on have taken a back seat.

Yesterday during our occupational and physical therapy I realized that Maya is really making big strides in her work. It's been been a while since I've noted these accomplishments. After her biggest milestone, walking, our work continues to progress at a slow but steady pace. I don't want to over look these accomplishments because they are just as important as walking and talking.

In OT she has been more and more focused. The introduction of a visual planner has really helped Maya stay on task. I'm sure there is a technical term for it but basically it a board that tells Maya what she is going to do. She sees the photo of the item we are working with and when she is done with the task she removes it and places it in a pocket behind the board. I really think it allows her to feel like she has a some control without having to act up.

This week Maya did great working with her beading. I'm so glad that I recently bought the string and beads made by ALEX. The little extra dowel rod in the beginning of the string helps her grasp the concept better. She is able to put her fingers around the rod and push it through the large bead. She completed two beads this week which was a first.

Another first for Maya was working with AquaDoodle. A friend of mine told me about this and I just happened to run across it at the store. What a great idea, a mat that lets you draw with water. No mess, no worry about spills. Maya really loved the hand stamp and she was actually interested in holding the pen and drawing with it. The fact that she sat in her little chair at her table and began drawing was such a big deal. Of course it only lasted a few minutes but it was a great effort on her part.

After weeks and weeks of working on her step technique, Maya surprised the heck out of me when I caught her actually stepping up a short step (with a little help from the wall). She did this once at a friends house and once in our garage. I was so excited to see this because seriously when all you do during PT is step up and down on a platform and over a beam, well, things can get a little boring.

All that hard work is paying off, and Maya is gaining the confidence she needs to try and do things on her own. I'm trying to step back and let her try...let her do it on her own. It is a hard balance, being encouraging, lending a hand so she doesn't get too frustrated and finally letting go. It seems that most of the time she has to work so much harder to get it, but I have to remind myself that she does get it eventually.

31 for 21, Day 13: wordless wednesday

2010-10-13T21:57:00.000-07:00

31 for 21, Day 12: I'm down with you

2010-10-12T14:51:00.003-07:00

I know I've mentioned this book before, when it was still in progress. Well now the book is here and it is available. You can purchase it on Amazon. Jagatjoti S. Khalsa is also doing book signings at different locations. I found out last week that he is coming here for a book signing at the end of the month.

To go along with this book they are working on a documentary. Here's the latest trailer. Honestly it brought tears to my eyes.

Please do check out their website. Beautiful photographs are previewed on the site. Amazing, just amazing work. It shows the beauty within us all.

31 for 21, Day 11: Monica and David

2010-10-11T15:51:00.002-07:00

I'm so excited to see the documentary Monica and David, winner of the best documentary feature at the Tribeca Film Festival. It's airing this Thursday on HBO. So set your DVR, VCR or Tivo if you live in the US. It's so awesome that they are showing this documentary on HBO and at a decent time, 8 pm/7c. Check out HBO's preview here.

Monica and David are also on facebook. They are always updating their page with photos of all their adventures. Check out their website: http://www.monicaanddavid.com/

Oh and here's an article from newsweek.

31 for 21, Day 10: Book, Book and more books

2010-10-10T14:35:00.003-07:00

I remember last year around this time I wrote about Maya reading on the potty. And I'm sure I've written other posts about how she loves books. I'm so happy to report that she is still in love with books. When Maya gets up in the morning the first thing she reaches for is a book. The same goes for when she wakes up from her nap. Most of the time if I let her be she will go into her room and start reading. I've even seen her do that when we have company. Maybe it's a way for her to decompress from all the activities in the house.

Over time we've collected many books. Friends have given us books almost every celebration and I am always looking for deals on books, whether it's at the local bookstore (used books rock!), secondhand baby stores or at the library. I've also subscribed to Baby Bug and Animal Baby magazine. I love the idea that there are magazines for toddlers.

When I was growing up I did read some but not a whole lot. I do remember having a stash of books in a cubby in the living room that I think my mother ordered from a company through the mail. Being a visual person, I remember enjoying the drawings more than the words. In some ways I think I'm obsessed with books now. I want Maya to have as many books as she wants. It would be so lovely to have her "be a reader". We have books in pretty much all areas of our house. So Maya can read at any given moment. And often she does.

When I see that she isn't interested in a book I try and sign it as we read it out loud. This first happened with Goodnight Moon. She just wasn't interested in the story and I started to worry if she would ever like to read this classic. So I started to sign the story to her and then an amazing thing happened, she started to pick that book to read before bedtime. I started doing this with all of her books. Now she knows the signs that relate to each page and she even signs the book to herself when she's on her own.

One of the greatest feelings I get is when I see Maya really studying her books. There are times when I see her focus on a book so intently. It's almost like she is really trying to understand the story. Her little eyes move back and forth and up and down, inspecting all aspects of the page.

It's true I'm a proud mama when I see this.

before lunch

first thing in the morning

some of Maya's books

on the potty

31 for 21, Day 9: Living the Dream - Inclusive Post-Secondary Education

2010-10-09T14:04:00.000-07:00

Thanks to Terry and Lianna at My life with Gabriel for posting this awesome video about inclusion. I am so impressed by the work this university is doing. It gives me great hope for Maya.

I really believe that inclusion is the way to go although so many times I hear how it falls short for our young ones. Because people with Down syndrome learn a little differently than others they can often ignored instead of embraced. If we could just change the way we thought about people who might look, speak or behave a little differently than us, I'm sure we could learn so much more from each other. Great things are happening though and I'm so excited to see this progression.

31 for 21, Day 8: just playing

2010-10-08T13:49:00.002-07:00

I wanted to post some more photos I took the other day. I had a few minutes between therapies and took out my camera to snap some shots of Maya. It felt like it had been a long while since I actually took out my "real" camera and focused it on her. I especially wanted to take photos of her face because she is growing so quickly. When she was smaller she would be more still for me and sometimes even smile on demand. Now that she's been moving around so much (I'm not complaining at all) it's been more difficult to get a good shot of her.

We are often so busy with therapies and daily activities with our mom's group that sometimes I feel like I just don't get enough time to just chill out with Maya. Any mom can attest to how busy motherhood is. It seems we have to stay one step ahead of the game...from preparing food and snacks to managing the home front. It's the busiest job I've ever had but also the best.

So here's Maya just playing, not at work, no agenda, no rush, just being in the moment.

The mad scientist

dance pose

itsy bitsy spider

31 for 21, Day 7: Myth Buster #2

2010-10-07T15:49:00.000-07:00

To all those who might think that a child with Down syndrome won't catch up to their peers. That "they" will never be like others...Here's something to watch.

Maya banged up her knee this week for the very first time. She was trying to use the steps to get to the slide. All her other friends were climbing up and Maya decided to join in. That is the first time she has ever tried to step up on her own without hesitation. She didn't make it but I am so proud that she tried.

I do believe that she will catch up to them, she just needs a little time. And perhaps she will need a little extra help or a different way of approaching the challenge. As long as we keep trying, the possibilities are endless.

31 for 21, Day 6: wordless wednesday

2010-10-06T14:00:00.001-07:00

31 for 21, Day 5: Myth buster #1

2010-10-05T14:19:00.007-07:00

I've seen other mom bloggers taking myths that are said about people that have Down syndrome and showing how they are not true. (I will try and find them soon and link them here.) The common myths can be found at the NDSS site. I was thinking about this and loved the idea, but thought I'd do a little spin on it and make up my own myths. After all there are so many of them out there aren't there?

One in particular has stuck with me for along time. I think I might have mentioned it in a past posting. "They (referring to child with Down syndrome) are stubborn." Ironically I've had a couple of professionals tell me this. And I use the word "they" because this is exactly how it was said to me. What Maya was doing at the time, only seemed like something any toddler would do. After all what toddler likes to take medicine or drink pedialyte? What toddler likes to sit and do exactly as you want them to for 45 minutes straight? I like to think that these people weren't trying to be rude but what they said seemed like a label put on my daughter for no other reason except the fact that she has Down syndrome.

Now I'm not saying that Maya isn't stubborn, because she sure can be at times. But she is an individual and has her own quirks about her, not because she has Down syndrome but because she is Maya. Maybe it's just me because I don't have other children to compare 24/7 but Maya seems to have as much stubborn as any other 2 1/2 year old. Mind you it sure doesn't help that both her parents could very well be considered stubborn as well.

I leave you with a fun photo I took of Maya today. She was having a ball under the parachute at our mom's group. I hope it makes you smile.

31 for 21, Day 4: Difference is an Artist's Game

2010-10-04T23:21:00.001-07:00

I am re-posting this from The Bates Motel, who found it on Zoey's blog, Little Wonders. It is so cool, this community of blogging mothers all blessed with that little extra something. I am grateful for every single person that is working towards bringing awareness to our society.

I hope you enjoy this video created by Clara Sigmon.

31 for 21, Day 2: don't stop the music!

2010-10-03T13:41:00.000-07:00

Friday night we went to a fundraising event. It was a family friendly 24 hour concert to raise money to support music therapy services through Higher Octave Healing. HOH works with ASU to provide music therapy to children and teens with developmental disabilities. Maya gets her music therapy through HOH and we are very pleased with the work they do. Unfortuntely the state has cut salaries for MTs that work with our kiddos. So you can imagine many people in this field are struggling or leaving this line of work. We went on Friday to lend our support to the therapist and students that will become therapist.

What was so great about this whole experience was how much Maya enjoyed the music that evening. We stayed for a few sets, different people sang and played their instruments, ranging from a tuba, piano, guitar and a full on rock and roll band. Maya sat the majority of the time watching and being very attentive. She clapped at the end of every song. It was a wonderful evening and even though we were out later than we usually are with Maya, I think it was worth it. It makes me so happy to be able to expose her to all types of music and experiences.

Here a few photos of Maya with her music therapist. I really do believe that music taps into a side of her brain that no other therapy does. As we all have felt on one level or another music opens up our mind and heart and can motivate us to do so much more than we believe we can.

striking a pose

working with the bells

moving and grooving

playing the xylophone

31 for 21, Day 2: a trip to the zoo

2010-10-02T14:26:00.003-07:00

A few days ago Maya and I met up with our moms/kid meetup group for a fun morning at the zoo. Well I thought it would be fun, but here in Arizona it's still a little on the hot side. Weather forecast was for 108 that day, but I figure we would get there early and hopefully not fry. Many of the kids in the group are a Maya's age or a little younger. And much of the last 8 months I've seen my friend's kids flourish and excel in many ways. Most of them are walking and talking. I have felt a little left behind in a way because Maya was not at the same place. But as you know Maya is now walking full time. She's still tripping and learning to walk in different environments, but she is walking. I suppose I had it in my mind that we would go to the zoo because now Maya can join in with all her friends. It really does change the dynamics of things when they can get around.

When we got there it was already starting to warm up and of course Maya didn't want to ride in her stroller or walk. She wanted me to carry her. Arrrggg! I find that she clings to me when she is overwhelmed with the environment. That's OK but she is growing and getting heavy...and it was warm so I was getting tired quick. Luckily a couple of the moms brought their wagons. Oh what a life saver that was. I placed her in the wagon and she immediately was happy. It was so cute to see her being pulled around (by one of the other kids no less). She was pretty content just sitting there and fooling around with the water bottle in the wagon. It was really funny but she didn't care to look at any of the animals, she just wanted to ride in the wagon. I came to the realization that she's just not into looking at animals that are far off. Now if you get her in a petting zoo well that's a whole different story.

Anyway we didn't last very long at the zoo, but I am looking forward to going back with her more often. I found out later the zoo actually has a petting area. That's something to look forward to.

Honestly the best part about the whole experience was Maya and that wagon. Not to mention watching how Maya and the other kids interacted with each other. At one of the stops I took Maya out to look at the tigers and when we were done and ready to move on, the little girl that was pulling the wagon turned to Maya and said, "Maya in wagon." She waited patiently while I placed her in the wagon and then off they went.

31 for 21, Day 1

2010-10-01T14:28:00.003-07:00

This is my second year doing this challenge. One entry a day for the month of October. It's Down Syndrome awareness month. I wasn't going to do it this year because to be honest I've been really having trouble keeping up with reading everyone's blogs, let alone writing my own. But Michelle at Snippets mentioned she would be posting a photo a day and I thought why not, I'll give it a go. I hope to write as much as I did last year but I can at least post a photo if anything else.

So here are the rules. Sign up at Unringing the Bell and post once a day on your blog. It's that simple. Well simple, but not really because we all know how busy life can be. I applaud anyone who can do this challenge and I'm hoping to check out all the other participants this month.

I took a quick look at some of the other posts from last year and wow, I can't believe how much Maya has grown. In some ways so much has changed and in other ways they are the same. I remember last year I had to dedicate my evenings to writing this blog. But this year I'm hoping to do this while she naps (I'm so brain dead by the end of the night). Maya's naps are getting shorter though and I am getting less "me" time on the computer during the day. I hate to think that perhaps her naps will be gone soon but I suppose it's all part of growing up.

I leave you with a photo of Maya doing her thing...getting into trouble! =)

adventures in Cali

2010-09-29T13:37:00.002-07:00

on the airplane to Cali

it always amazes me how Maya rolls with the punches. Maya doesn't stress about flying on a plane which is so wonderful. thank goodness for ipods and now our ipad. she watched her videos and played her favorite games quietly. unlike other times we've travelled, Maya seems to have adjusted to sleeping or should i say falling asleep at a reasonable hour. this made me very happy to say the least! she never did get very good about nap time though. the only way we could get her to nap was by driving around. these are the joys of traveling with a toddler i guess.

by the second day, Maya taught herself how to climb up on the couch at my sister in-law's house. from then on she has been climbing on couches and getting off by herself just fine. it makes me feel like my little girl is growing up. i love seeing her independence.

it was so great to see the interaction between Maya and her two older cousins. she seemed to really enjoy just hanging out with them. they were so sweet with Maya and indulged her by singing and dancing when she asked. every time i see them interact i wish we lived closer to each other.

when we visited our friend in San Jose the first thing that Maya did was walk right to the doggies. she just loves dogs and she is not at all afraid of them. in the beginning she kept signing horse because i guess to her they are large enough to be horses. she even tried to ride them a couple of times. i thought that was cute.

at the playground

the highlight for me was when we drove down to Monterey. our first stop was Monterey Bay aquarium. Maya wasn't as interested in the fishes as she was just roaming the place. luckily it wasn't crazy crowded and she could walk around quite a bit. on our way back to the hotel we saw a farmer's market and decided to check it out. it was super crowded but we managed to get Maya in the stroller (a small feat in itself) and walk around a bit. the best part was when we found a couple of musicians playing on opposite ends of the market. Maya was just so mesmerized by the musicians. she wanted to hang out and hear every single song. she watched them intently and clapped at the end of each song. we could have been there all night i think and she would have been perfectly happy.

it was the perfect ending to our week long trip to Cali. being with our friends and family is always so special to me. it seems now more than ever.

Monterey Bay aquarium

not so impressed with the slimy water

listening to some funky music


		the best fan anyone could ever have

wordless wednesday

2010-09-15T17:10:00.000-07:00

i'm back!

2010-09-07T16:40:00.003-07:00

boy have i missed you all! i haven't been able to read any blogs lately or even write because we have been doing some traveling lately. so today during maya's respite time i decided not to go to the gym but instead come to a local coffee/cafe and do some writing. it's been a long time since i've used respite to really relax, just hang out and go within. usually i'm trying to run errands, shop, workout, or socialize. it's good but there is nothing that can replace slowing down a little, having a cup of joe and doing a little writing. so.....

we always said that when maya started walking we would start traveling, i think we said this mainly to help us through the the times of limited to no travel. before maya i have always tried to travel as much as i could. going to a new place, experiencing the people and culture of a different location has been a passion of mine for along time. but after maya was conceived, traveling became limited for various reasons.

when maya was born, one of the ways my husband helped me and perhaps himself deal with the challenge was to say, "maya will be a world traveler!" or "maya's going to climb mount everest!" it really touched my heart because he was basically saying that she can do anything and she will be a role model to everyone. but heart of hearts, i think there was a part of me that started to focus too much on the "work" maya had to do. physical therapy, speech, occupational, feeding and so on, has taken a lot of time to manage and i don't want maya to miss out on any opportunity to develop. managing the home, being a mom, (ie: a teacher and therapist) has taken a great deal of time. the fact is i have taken on the responsibility of managing our daughter's life. she is like a little super star, and i am her assistant.

all in all i don't regret a thing, but i can see now that i need to enjoy things that aren't on the agenda. perhaps throw in a little curve ball every once in a while. like going to a new place. a place none of us have ever been before. balance is something i think about everyday and in a way traveling has made me realize that i need to relax and have fun a little more. i think i'm back, or at least this is a step towards me coming back into my own again. the girl who loves to travel, loves to laugh and take photographs, the girl who loves to watch other people and think about what makes the world go round. there is more to me than just being a mom to maya, there is a lot more.

next stop danville, san jose, monterey california, i can't wait to tell you all about it....