Update...

Here's a quick update on all the goings on of Maya. In Nov we went to India. Our first trip to India as a family. Maya had the chance to meet her relatives in New Delhi. It was a great trip over all, even with Maya's food limitations and so on. It was wonderful to see how people loved meeting Maya. They all welcomed her with open arms. Maya didn't seem phased about the environment and I really do believe that being around Hindi speakers somehow kicked in her speech. She had been starting to talk minimally after some intense speech therapy last year. But after coming back from India I think she felt more comfortable with her voice.

That being said her speech has really taken off this last month or two. She is really trying. It's not always clear, she has much work to do with articulation, but she is trying. That's the difference with her now. Everyday she is saying words she didn't say before. My way of thinking is changing now. Instead of having her sign, I ask her to say the word and then if I can't understand it I ask her to sign it. We also have a new speech device that I am using to clarify her wants and needs. Something I do see is more frustration from Maya. Waking up her voice has also woken up her needs and wants, I think. There are emotions flowing and it's still hard for her to decipher them.

When I'm with Maya I focus on her and it's easy to stay in that bubble. I don't compare her, I don't wish for other things. I am focused on keeping her on track. And although I know she is delayed, somehow it doesn't effect me emotionally because it's kind of like looking at numbers and stats. But when I see her with her peers it always hits me right in the gut.

 Last weekend we went to a birthday party with kids aging from 3-4. All the kids are talking to each other in full sentences, they are running, jumping and playing pretend. They have awareness of their body, they are focused on all the activities, the food and cake. Maya on the other hand can't quite play with them or keep up. And in one instance when she tried to interact with a little girl, she was shut down. I have seen this with many kids. They don't understand what she wants and because of her lack of speech, most of the time they just stare at her and watch her like she's an alien. I find myself trying to explain to them what she is wanting to do. But most kids at that age just don't care. If you can't keep up with them, you are of no interest to them. This is when my heart breaks. I don't know what Maya is thinking. I don't know if it bothers her as much as it does me. Maybe it rolls right off her little feathers, like water on a duck. Maybe she forgets as soon as she turns the corner. But for me it makes my heart ache. I can't help but feel crushed. Because with all the the strides she makes, it feels like it's just not enough sometimes. I want them to accept her. I want her to have friends. Like the little boys that walk to preschool together every morning, they call to each other and smile and feel happy to see each other. I want that for Maya too.

Like many things with Maya, milestones don't come easily and neither will this. There's only so much I can do, then I have to accept that it is the way it is. I am wishing and hoping that it won't bother her as it does me. That she will be happy with all that she has...and perhaps teach me the same.

Even while I'm sad, I am also happy that she is still making progress. Each party seems to go smoother, each time she seems to participate more and more. At this party, Maya seemed mildly interested in the princess that was painting faces, but when I asked her if she wanted something painted on her face, she said ok. With two children ahead of Maya, she was able to stand and wait without a fuss. She watched and seemed interested the whole time. During her turn she wasn't quite ready for her face to be painted but she was okay with a painted heart on her hand. She seemed happy with it afterwards, showing it to me and swinging it around towards the sky. This is a giant leap for Maya kind.

When Maya was done at the party she let me know. It was right after everyone sang Happy birthday. No surprise there. She usually not into the pizza and cake. That day I decided I wouldn't force the issue. I didn't want to make her sit with the other kids and get agitated with all the noise. She was done. She had an extremely good experience and I wanted to leave it at that.

There was a funny feeling I had as we walked back to the car. It was that time of the day when the sun just starts to set, that's one of my favorite times. I felt content holding Maya's hand, walking away from the party. Feeling her hand in mine, just walking on the sidewalk together, something felt really "normal" about that. I am a mom holding my daughters hand, and she was happy walking with me. This felt just right.

Step up walk and the end of a good month.

Nov 1st.  Officially the day after the 31 for 21 challenge.  I didn't get to blog the whole month as I've done previous, so I thought I'd try and catch up while I can.  I want to tell you that this last month was a good month.  For October the last couple of years both Maya and I have gotten sick with colds and allergies.  This October we both did really well.  As for writing the 31 days for 21, well I did miss a few days here and there.  It's the way it is now.  Maya keeps me busy as ever. 

I'm always thankful for those moms that can write on their blog everyday.  It keeps the story going.  It keeps us connected.  So I'm hoping that I don't drop off the blogging scene too much like I did the last year.  I'm hoping to keep anyone who reads this, no matter how few, connected to Maya. After all I started this blog for our family and friends who wanted to know how she was doing.

For all my friends and family that know about our little Step Up for Down Syndrome walk in October (formally called the buddy walk), you know many of us work to raise money for our local organization. We walk in the ASU homecoming parade and show our pride in people that have Down syndrome. It's a great way to bring awareness. This year Maya's Dream team had 17 people walking the parade with her. It was so wonderful to have them join us.

Last year Maya had some struggles at the walk, but this year she did so much better. Despite the noise and all the distractions, she didn't reach her breaking point. Christina, Maya's respite/hab provider was there to support her. She came on her own and brought a friend. It really brought out the best in Maya. I've said it before Maya and Christina have this little sister, big sister thing going on. She can encourage Maya in ways that no one else can. Even though Maya was in sensory overload she worked through it and we were able to walk the entire parade with our team. We even stayed after and watched the rest of the parade.

I'll say it again and and again. I am so grateful for all the support my friends and family give me. Whether it's to come out once a year to walk with us, have play dates with Maya or just give a little money to the Down Syndrome Network, it means so much. It means that they see Maya for who she is, a fun little girl, my daughter, a person who happens to have Down syndrome. They support me on this journey in ways that I can not even describe. I am very blessed.

Maya's Dream Team

31 for 21, Day 31 - 2012

31 for 21, Day 29 -2012

It was a busy weekend so I'm catching up on the last few days.  Here's what I wanted to write for Day 26.  Our first school field trip of the year.  The annual pumpkin patch.  This year Maya's Dada was able to come with us.  Maya was so excited to have him there.  Usually field trips are a major challenge.  But the last year Maya did really well at the pumpkin patch.  This year it was even better. Maya was quite the independent girl.  She enjoyed the hay ride, the maze and decorating her pumpkin.  Then she was done!  That's my girl.  When she's done, she's done.

31 for 21, Day 25 - 2012

Snippet of my day.

Today I stuck to my guns and didn't pick up Maya and carry her in my arms after school.  This may seem like a small task, or you may ask, why can't you carry her?  99% of the kids walk to and from school (to the parking lot or the bus).  But Maya for what reason I have no idea, doesn't do that.  She stands in front of me and now she says "up".  If I don't pick her up she grabs my dress, she tugs, she sits on her bum and won't move.  And during the hot months, it's torture to stand there in 100 degree weather, trying to get her to walk with me.

The weather was manageable today.  I figure might as well start now.  She is on the verge of being 4 1/2 soon...33 pounds of dead weight and the most wiggly little monster in the world.  It's becoming more and more work to carry her around these days.  

How long does it take Maya to walk from school to the car? Well let's review: first stop, even before we get out of the school gate, she has to stop at the wagon, and try and play with it.  I play, "ready, get set, go!" with her, that usually works a couple of times.  Once we are out the gate the sidewalk fun begins.  I try and entice her, telling her, let's follow your classmates.  She sits on the ground.  Usually a very good tactic since at 90 degrees I'm ready to run for shade.  Today it was pleasant and I was determined....so I just stood there.  Encouraging her as much as I could, telling her she could do it.  "You wanna hold my hand?"  Um, no way!  She's too independent.  Ha ha!  We get to the entrance sign at the parking lot.  We are almost there I say.  Of course she has to read the letters on the sign, a game we played last year.  Then she takes another rest.  I wait patiently.  She gets up and turns to look at the parked bikes.  Ok down the curb to the parking lot that was a big step.  She sees more letters, opps, I forgot about that.  Ironically it says no parking on the ground, and soon she's sitting and proceeds to lay down trying to take her backpack off.  Finally I take the backpack and pretend to start running.  She runs after me.   Yes! We are at the car.  I feel like I've just completed the most difficult task of my day.  That is getting a four year old to do what you want them to do. 

Triumph!

31 for 21, Day 24 - 2012

31 for 21, Day 23 - 2012

Mat man appears.


Maya's been using her magnadoddle a lot lately. She been scribbling on it, making marks here and there, dots, etc. Today I caught a glimpse of something beautiful. It was a drawing. A real drawing. Maya made it all by herself. It is the first time that I've seen her work really look like something. It was Mat man.

Who is Mat man you ask? He's a figure that is created with wood pieces and other parts. It's part of the Hand writing without tears program. You sing a song and you put the pieces together.

"Mat man has one head, one head, One head so that he can think...
Mat man has two eyes, two eyes, two eyes so that he can see...
Mat man has one nose, one nose, one nose so that he can smell..."

And on and on goes the song. By creating the parts one at a time and singing the song Maya is starting to understand parts of the body. After you create Mat man with the wood pieces, you can draw Mat Man, singing the same song.

Maya's OT has been using this technique in the last few sessions. Last week she showed me the first time that Maya tried to draw Mat man on her own.

Today Maya drew Mat man without any prompts. She was just standing there drawing. I was so lucky to see it. Because she usually erases everything right after she draws it. So who knows how many mat man's she has sketched before I saw that one. This is a huge milestone! What is most wonderful about it is that even though we have been working on her pre-writing skills, I was not expecting her to draw Mat Man so soon. This is so encouraging. I'm looking forward to doing more work with the Handwriting without Tears program for certain.

Meet Mat Man, on Handwriting without Tears website.
http://www.hwtears.com/gss/learning-lounge/matman/meet-mat-man

31 for 21, Day 22 - 2012

Today.  Different than other Mondays.
Maya walked from the car to school when I dropped her off.
Dada came to pick her up from school.  She held our hands and walked the whole way.
No therapies to go to today.
Maya and I, free to do whatever we want.
No where we needed to be.
We shopped.  Maya got cool new shoes and so did Mama.
We ate.  Grilled cheese sandwich and salad.
In the Disney store a new friend came home with us, Gonzo.
It was the best Monday in a long time.

My pilot.

31 for 21, Day 21 - 2012

  More about playdates.

It was good to see Maya playing with her friends. It's still parallel play, but it's getting closer to actively playing with each other. This time when T and G started playing with the doctor set. Maya sat down and also wanted to play. With a little coaching she started to check Jessie's heart with the stethoscope.

Then T brought out the Break the Ice game. One of Maya's favorites. They all helped me set it up by handing me the ice cubes. Ironically this process usually takes longer to put together than actually playing the game. When it came time to play, they did it so well. They took turns and even shared one of the mallets.

When we went outside, the kids played on the little slide and ran around the yard. We changed the level of the slide so Maya was hesitate to go up it, but she did with some help. She also enjoyed watching her friends go up and down the slide. Maya, T and Christina pretended to be airplanes, soaring through the grass. That was a precious moment.

These are the little things in life that I appreciate more than anything. From the time she started to crawl, I've tried to have Maya interact with her peer, Whether in playgroups, classes, or story time. Sometimes it feels like a struggle because the level she is at is not the same as others her age or even younger. It takes time to get her there. It's a daily challenge, something that others might not realize. Whether it's walking, jumping, how to hold a crayon, or learning how to appropriately play with her friends...it take effort. But always the reward is worth it. When I think about the way I am raising Maya, I think it's exactly the way it is supposed to be. It is hard work to bring up any child, and yes, it take a wee bit more effort to do it for someone with special needs. I don't think that it would be much different than if she didn't have Down syndrome though. We all want the same things for our children. Among love and happiness we want them to be the best person they can be. This is all of our goals in the end.

Three doctors working hard.

Break the ice.

Down the slide.

Watching her friend.

Soaring.

31 for 21, Day 17 - 2012

Wordless Wednesday.

31 for 21, Day 16 - 2012

Maya the baker.

Every Tuesday I pick up Maya from school.  I have to take her out a little early so she can attend her occupational therapy.  Usually we all drop our kids off from the outside for school, so when I pick her up early I get to walk inside the school.  A place I only see once a week.  As I walked the hallway in the school to her classroom, I noticed the wall had some decorations.  There was Maya or at least a picture of her head pasted to an outline of a baker, on the wall.

I remembered that the week before fall break there was a lesson about cooking/baking.  The class made a couple of projects, one was a chef hat and the other was decorating and eating cookies.  The teacher had mentioned to me that Maya really enjoyed pretending to be a baker.  

It was nice to see Maya's project hanging with the rest of the class.  And to see how she colored her page.  I think she's come a long way with her coloring.  She is still trying to eat the crayons, but every day her interest in coloring gets a little bit longer.

On a similar note I've noticed in the last few weeks that Maya has been gravitating towards using her magnidoddle.  She scribbles "pictures" or maybe she is "writing" stories.  She sits and draws and draws for quite a while (for Maya).  She is practicing holding the pen in a tri-pod grasp. It's good to see this stage.  I noticed she leans towards markers, pens or brushes, perhaps crayons are just not her medium of choice.  I just love watching her develop into her own person. 

31 for 21, Day 12 - 2012

She can say ice cream! 

That's right she says ice cream in her cute little voice.  When I ask her if she wants it, she says, "kay".  She signs it and I say, use your voice.  Then she says it.  Wow.  So I sing to her, I make up a song, I say, now it's your turn.  She sings it right back.  Not the words so much but the right rhythm, I still hear the end of it when she says, "ice cream".

It's getting clearer every day.

31 for 21, Day 11 - 2012

Remember I told you that Maya did so well at her friend's birthday party this last weekend.  Well I can't help but post a few photos from that party.  They aren't great because they are from my phone.  They do however capture how engaged Maya was in the party.  She followed directions and tried to do the obstacle course as well as other activities.   She didn't just dance around on her own like she likes to do (they did have good music playing).  As she gets older I am enjoying the things that other parents might already take for granted.  She doesn't need me right by her side every second to direct her.  She watches others and sees what they are doing.  She tries to follow them the best way she can. 

Sitting in circle, waiting for directions.

Twirling.

Standing in line getting her medal.

31 for 21, Day10 -2012

Wordless Wednesday.

31 for 21, Day 9 - 2012

Play time in the tub.  

A few weeks ago Maya discovered a new play space.   It's always been there but for some reason she's never been that interested in it.  One day she dumped her dolls in there.  Then she wanted to go after them.  That's become her new favorite place to hang out.  She actually stays there for a long time (in Maya terms).  When I watch her, I pretend like I can see her thoughts.  When she talks to her dollies, when she makes them dance or hugs them.  I hear her making up stories and pretending.  It's magical to see her play in this way. 

31 for 21, Day 8 - 2012

Highlight of my day:  Maya walked from the car to music therapy.

This is literally a miracle.  Let me tell you why, Maya does not like to walk.  OK maybe that is an exaggeration.  Mostly she doesn't like to walk where you want her to walk.  She only goes where she wants. Kinda sounds like a diva, doesn't it?!  Ha! 

On a more serious note,  I'm not sure if it's that she is unsure of the uneven surface she is walking on or if she is distracted by all the things around her.  Sometimes she dilly dallys by exploring everything on the ground and other times she just looks at me straight away and says, "up".  If I try and ignore her or encourage her to walk, she stands in front of me every step I take and won't let me pass.  Whether it's to go to school, her therapies, or the gym.  She wants to be carried.  Of course this is something we are working on.  But it's been very slow going. 

So you can imagine my surprise when she wiggled out of the my arms and started walking to the therapy building, today.  There were a few stops here and there, mostly to do a little dance and look at her shadow on the ground. But she did it, she walked from the car, the parking lot, hallways, into the elevator and to her therapy room.

I took a bunch of photos because I was so excited.  Excuse the blurriness.  Oh and yes today she wanted to wear her Halloween costume again.  She found it in her closet, even though I was trying to hide it.  Guess she found a new favorite dress.

31 for 21, Day 7 - 2012

Opps, my bad.  I missed one day of blogging already.  Rats!  Oh well not much I can do about it now.

Day 7 of 31.

It was a busy and fun weekend.  The usual craziness happened.  Get togethers, shopping, working out, eating great food and a birthday party.

Birthday parties seem to put me on edge a little.  Mostly because I never know how Maya will do at the party.  Today was awesome. It really gave me happiness to see that she was really enjoying the activities at the party. She was engaged and followed directions so well.  It really put things in perspective for me.  I had a chance to sit back and watch her this time, since Dada was there to help.  Usually I'm so close to her, almost to the point that I don't see her growing in front of me.  I get a different view because I sit next to her all the time.  It's good for me to step back, literally, to be able to see Maya as a whole person.  She is looking older, she is growing and although I know she is making strides towards her goals, I don't always see how much she has changed.

It was a good birthday party.  Aside from her being upset when they yelled "Happy Birthday", and the scrap she got from a fall.  She even ate her pizza slice while sitting with all the other kids.  Of course Maya doesn't like the birthday song or cake.  So Dada took her out before that happened.  I think it was a good plan.  The party ended with a positive thought in her head.  

After the party we went to Costco for a few things.  While we were there I stumbled upon the Halloween costumes.  I was so excited when I saw the cheerleader outfit.  Everyone lately has been asking me what Maya is going to be this year.  Unlike a lot of children her age, she's not really into any character in particular.  So I wasn't sure what she'd like to wear.  Usually she just wears whatever I put on her for Halloween.  Not ever has she complained about the outfit.  This year I was wondering if she would care or not.  So when I held out the two cheerleading outfits, one blue and one red, I was so happy when she immediately smiled and pointed to the red one.  I asked,  "You want the red one?"  and she said, "Kay!"  She was as excited as I was about the find.

When we got home I put the outfit on the couch and she immediately saw it and brought it to me.  She was signalling that she wanted it on.  From then on she was wearing the little outfit and playing with the matching pom poms.  I  taught her how to do a cheer.  Although I'm sure she has seen it on The fresh beat band show.  The whole afternoon she kept going to her favorite mirror spot and doing her cheers. 

Others have told me this is a fun age for our kids, they are little sponges.   I really see this is true.  Maya takes a lot of info in. Even if she doesn't look like it at the beginning. She gets it.  Then she shows you her interpretation.  I wasn't sure if she was getting the idea of cheering, but then I saw her doing it in her own style.  She knew exactly what she was supposed to do.

Now I can't wait for Halloween. It will be interesting to see how she does with the trick or treating.  Like I said, every year gets better and better.  What a great adventure to be on.

31 for 21, Day 3 - 2012

31 for 21: Day 1, 2012

Yes, it's that time of year.  October is Down syndrome awareness month.  In honor of which, I try and post on this blog everyday this month.  I have to be honest, every year it gets harder and harder to do this activity.  It's been especially hard to find the time to post in general.  I think I'm either exhausted from the day or I have other things that are just more pertinent.   I love to read other people blogs that have such eloquent words and ideas to convey.  Me, well I'm a little rough around the edges.

Nevertheless I will try my best to post something during this month.   Although it might seem we only celebrate Maya's life here during October (because I write the most during this month).  I live with this extraordinary being and experience everyday the amazing strides she makes.  Sometimes she takes a step back here and there and this is also part of the journey.  Down syndrome awareness doesn't just happen in October for us.  It happens 365 days of the year.

On that note the most amazing things have been happening these last couple of months.  Maya is finding her voice.  She has started to say words, not just sign them.  She says,  go, eello for hello, up, uh oh, bye, hi,  eedy, for ready, o or no, es for yes, on a daily basis now.  The words are starting to add up.  I'm having so much fun listening to her.

Just a couple of days ago, she tried to say I love you.  In her sweet little voice, she said, "i oove ou".  It was so precious. I have been waiting to hear that for so long.  It's true I had to prompt her, but the fact that she is trying to repeat words that I'm asking her to say...well let's just say it is amazing!

Since Maya is starting to repeat words, now you can almost do what you would do to a one year old, act like you are talking to them.   When they babble, you say, "yes, oh really?  uh huh."   Today I heard our respite do that with Maya.  It was the first time I've heard someone talking to her like that.

Some might ask, did you talk to her all this time?  Did you encourage her to say words?  Has the sign language gotten in the way of her progression?  The answers are yes I spoke to her, I encouraged her countless times, I sang to her, I asked her to sing to me, I told her use your words, say this, say that.  As for the sign language, well, I don't think it's gotten in the way.  I think it's helped us all get along better, she can communicate to me, to her respite without throwing a tantrum.  

Sometimes it's not just what we do to push them along, it's when they are ready to make that step, when they do it.  Of course the therapy is priceless, but I know Maya, and when Maya is ready that is when she makes her move.  At that time, like all other children, she shines.

Wordless Wednesday: jammin'.