Tuesday, February 28, 2012

A new year, in February.

Happy New Year!

I know it's rather late to say such things, but I did start this entry back in January.  And now it's the end of February and I still haven't found the time to finish this thing.  In some ways maybe I needed a little break from reading and writing blogs but I've never stopped thinking about what I'd say. Although I have wondered if writing my thoughts down amounts to much.  It's made me question why I do this.  I know I'm not a great writer, I'm not poetic like other bloggers I read, hell sometimes I just don't even know if anyone is reading this thing.  When I really think about why I write here, I think that I just don't want to forget.  I want to always remember the things that Maya does, and to share this with her family and friends. 


I often describe myself as being a hands on mother.  I say this because I can't sit back at the playground and watch my kid play on the jungle gym with the other kids.  I have to be right there with her because she has a hard time dealing with the height of the platform and her sensory issues kick in. At that point she usually holds on to me for dear life.  She doesn't always know what to do with the sand toys I bring with us.  So I remind her how to play. And although she loves to watch the other children playing at the park, she doesn't know how best to interact with them. But these little moments remind me of the upside to being a stay at home mom.  See needs me.  More than that, I am grateful that I can be there as her support and comfort.


Otherwise, Miss Maya is pretty independent.  I say independent but really I mean she doesn't do anything she doesn't want to do until she's ready.  Including go to the potty when mama wants her to go.  Hold hands on the side walk or even walk on the side walk for that matter, (she rather be carried).  She has always done things in her own time.  This of course has been a learning tool for me.  Let's just say everyday I learn more and more about patience and acceptance.


With Maya at preschool and 9 therapies a week, I don't have to tell you it's been really busy here.  Results from a new speech evaluation shed some light on Maya's speech delay.  They said Maya leans towards having Apraxia.  So we added three more sessions of speech therapy per week.  The center we go to has specific techniques that they have developed and so far we are seeing very good progress. 

One day at therapy she was trying to mimic what the speech therapist was telling me.  It was so cool to see this happen.  To recognize that she IS trying makes all the difference in the world.  She is mimicking what barney is singing, what the fresh beat band is singing.  It's so wonderful.  On top of this, for the last few months she has started to say "kay" as her yes. She is learning to communicate not just though ASL but through her voice.  It's slow but everyone who knows her, sees the difference.

I know that Maya is smart in so many ways, I know she understand us clearly.  I know little about Apraxia, but what I have been told is that the connection between the brain and action are lost somewhere along the way.  She knows what she wants to say I'm sure, but she just can't make her vocal cords and mouth do what it needs to do.  The fact that she is not talking sometimes makes me sad.  But I have learned to read Maya's body gestures, facial expressions, ASL signs and even her babbling sounds.



To hear her say words, like kay, go, bye, and of late we are working on Barney, more, and potty.  Well you can imagine how my heart races.  I'm also learning to accept that Maya is where she is meant to be.  It is a challenge but she will learn to communicate with others, whether it is through ASL, a speech device or her own voice.  I do think that her personality is strong, she is a strong person and she will succeed in anything she wants to do.  One thing is certain, I don't take anything for granted with Maya.  Every little milestone she makes I take note and I hope to always share them here with you.

Friday, November 25, 2011

halloween...a long time coming.

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.

Monday, October 31, 2011

31 for 21, Day 31: Happy Halloween.

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...

Sunday, October 30, 2011

31 for 21, Day 30: Quality time

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.

Saturday, October 29, 2011

31 for 21, Day 29: Step Up Walk.

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.

Friday, October 28, 2011

31 for 21: Day 28, Courage.



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.