The Amazing Maya in 2014

Here's my first post of the year 2015.  I've been wanting to write for months now, my usual excuses hang over my head, not enough time to sit down and write.  There has been so much going on in the later half of 2014 that I've been wanting to share.  Maya has been making amazing strides and accomplishments.  Most of the time I post these things on facebook but I know some of our family isn't connected to facebook. 

Number one and foremost on my list of milestones is that Maya is potty trained.  This is major!  I am so very proud of Maya and so relieved that this day is finally here. Without going into too much detail I'll say that it's been a long and winding road and that it wasn't for lack of trying that Maya didn't get potty trained sooner.  She was just not ready.  No matter what my girl teaches me patience. Even when I'm clawing and screaming I have nowhere I can go except to wait patiently.  The day is finally here and I am one proud mama!

In Maya's words, "We did it!"

It's sounds so weird but this is one of Maya's greatest accomplishments in 2014!  Everyday I thank the stars that Maya got it!

Other amazing accomplishments: 

Maya goes to bed on her own.  This means, following our usual routine of bath, pjs, reading, brushing and storytime, Maya will walk to her little bed on her own.  I tuck her in and she says "good night mom, I love you, sweet dreams."  It's a glorious thing and it came as a surprise to me.   This might not seem like a great big accomplishment but it's a wonderful thing not having to rock her to sleep and then carry her to bed.  I do miss my cuddles with her but I'm so glad my little girl is growing up.

Maya is talking more and more.   Some of Maya's favorite things to say are: "home sweet home!" "happy holidays!" "You ok?" "We did it!" "I'm Maya." "no school!".  I should disclose that unless you absolutely know what she is trying to say you might not get it.  Articulation is still an issue, but I'm glad that she is starting to express the person that she is. It's nice to see her personality developing.  Language is by far one of the best ways to know someone.  And it's been one of my main concerns and quite honestly a big struggle.  She's not able to carry on a conversation, but Maya is slowly starting to be more vocal and has an amazing memory for names.  She knows all her classmate's  and teacher's names.  She says "Thank you" and "your welcome" most of the time and her teacher reported that she also says thank you for the kids at school. 

When it came to the holidays this year, Maya was really into Christmas songs.  This was a big development over last year.  She also loved opening up all the presents this year and didn't stop at just hers.  It was fun to see her face, when she opened the gifts.  She even kissed a few gifts, which was really cute.  After opening each gift she said thank you to everyone who gave them.

She's never said this but I do think that Halloween is Maya's favorite holiday.  She really enjoys going up to everyone's door and saying trick or treat.  Maya doesn't like sweets, candy or chocolate, but she very much enjoys the spirit of Halloween by dressing up as a firefighter and getting her share of treats.  I'm very grateful for the friendship of one of Maya's past respite provider.  Every year she comes out to trick or treat with Maya.  It truly makes Halloween a special time.

Other things that deserve mention are, Maya's willingness to try and climb up the playground equipment with guidance (before she was terrified),  standing on the scale when being weighed at the doctor's office, turning book pages on her own,  drinking out of a cup, eating tortilla chips (a new food),  helps with chores.  These are the little things that might go unnoticed to some but they make a big difference to me.

That's all for now.  I know it's a long post but very much overdue.

The adventure continues...

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.

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 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.

Breakthrough!

Over the last few months we have been working hard at Maya's speech.  At times it's been hard because there has been little to no progress.   It's hard for me not to worry now that she is 4ish years old. We have been paying out of pocket as well as having the state provide therapy.  The diagnosis of Apraxia has really helped us work with Maya in a totally different way.  She just wasn't responding to the typical way of working with speech therapy, the visual hand cues has really done wonders.

I'm writing today because I am listening to Maya try and pronounce words.  This feels like a miracle.  Before she didn't even try.  It was like pulling teeth to get her to get her to say B.  She responds so much better to music.  But now, I hear her trying to say words like Broccoli.  Without any prompting.  Wow!

The other day she was watching Elmo, the scene was winter, and Elmo was wearing a jacket.  She turned to me and said "Cooooold"   And signed it at the same time.

I couldn't believe my ears, so I asked her to say it again, and she did.

Sometimes I forget how resilient she is.  She adjusts to change so easily.  Unlike myself.  We have gone through so many changes in the last few months, different music therapists, new respite, saying goodbye to her sensory OT and having a new one work with her.  Yet through all this, she is growing.

In the last few weeks I've seen a breakthrough.  The words are there.  She is trying.  They aren't
perfect, but she is using her voice.  And her voice is amazing!

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.

31 for 21, Day 12: haircut and dada

two things happened today worth noting. the first is that maya got a haircut today. on a whim i decided to take maya to get a trim because quite frankly i'm no hairdresser. my grandmother used to cut my brothers hair as well as my hair for years and years. i even have a photo of one of them getting a haircut when he was a little boy in my grandmothers kitchen. it's a classic photo with my grandmother wearing 50's looking glasses. as i do with many things i try to document these events, although since it was a spontaneous discussion i didn't have a proper camera. thank goodness phones have cameras!

i should preface the photos by saying that the last and only time we took maya to get her haircut, she totally freaked out. it really surprised us because we had never seen her react that way. the whole time she was crying and signing "all done". we were so sorry to put her through that, that i opted to cut her bangs since then. but her hair had become so out of control...it was time.

surprisingly she didn't do too bad, she did fuss and cry about 90% of the time though. the photos i took are not as cute as the photo of my brother and grandmother but at least it is documented.

the second thing noting today happened at dinnertime. as our little family had dinner together, maya suddenly broke out with her verbal "dada" word. she has been saying dada for a while now so that part didn't surprise me, it was the fact that as she said it, she was signing "dad". i didn't want to get too excited at first because i thought maybe this was just a coincidence, but when she did it two other times after we acknowledged her i was so happy. at that moment i realized she was connecting her voice, a word that she spoke, to a sign that she did. wow! it totally caught me off guard. that was a sweet moment in time. kudos maya!

maya's first language

maya's first language is not english, hindi or spanish, it is sign language. this is no surprise since pretty much all maya says is da-da (on a good day). but what is so surprising is the rate at which maya is learning words.

the very first sign that maya did was "all done". i remember watching her very carefully for days just to make sure that she really was signing this word. it was around her first birthday when it seemed the light bulb went off in her head. i was so happy when i saw she was getting this one one word down and then one day out of the blue when i said milk, she started to sign milk. i was so impressed because it almost seemed that she picked it up on her own. i was spending so much time working on teaching her "more" that i didn't think she would skip that and move onto "milk".

everyday it seems that she surprises me with a new word. so far she has signed: all done, milk, more, ball, signing time, shoes, baby, wash hands and hungry. some of these words she just picked up on her own like wash hands. she loves to use this sign when she sees water (when i wash my hands or when we are getting her bath ready). other signs she has struggled with like "more". even though it's the sign i've tried to teach her the most she doesn't seem to initiate it very often.

now i have to say i don't feel guilty at all for letting her watch those baby signing time videos. i really think that she is catching on so quickly because of them. the nifty way they use sign language when they sing songs is what i think catches her eye and ears. she honestly pays attention to the videos and now i know she is learning from them.

sweet voice of maya

today we had speech therapy. i've been a little concerned with maya's lack of progression in this area. it seems that all the other therapies are going rather well. even her occupational therapy which we have not had a bunch of session with, have seemed to produce quick results. we have been working with our speech therapist for four months now and still it seems that maya has only been cooing. babbling (such as baa, gaa, maa) has not yet come. i have read that these sounds are the building blocks to speaking words.

i know that maya will have many hurdles to cross in her life but speech seems to be one area that i have some anxiety about. maybe it's just me, but i have always had the feeling that when someone cannot communicate as clearly as the "norm", it makes people uncomfortable. i don't want maya to have these struggles. i suppose it is inevitable. and perhaps it is my own feeling of not knowing how to handle such situations that makes me feel helpless.

when i think about learning how to speak, i think it is probably one of the hardest challenges to meet for anyone. i often mispronounce words. it feels as if my tongue does not do what my mind tells it. i wonder sometimes if this is what is happening to maya. maybe she wants to say the word but her tongue is not in the proper position. when she first said da-da i thought it would open the door to so much more. but it has been over a month since she first said that and i am still waiting for her voice to take flight.

every once in awhile i can hear her in the mornings, quietly, cooing in her bed. she has such a sweet voice, so soft and pure. i like to think she is having a little conversation with herself in a language we just don't know yet. what comes from her mouth seems like music to my ears. i only wish to hear more.