Saturday, October 31, 2009

31 for 31, Day 31: step up for down syndrome & halloween


step up for down syndrome:

what better way to end the down syndrome awareness month than to join in on the "step up for down syndrome" event. this is the second year that we have participated in a down syndrome walk. last year we went to the buddy walk sponsored by the sharing down syndrome group. this year the ds network decided to call their event, "step up" instead of the buddy walk. either way it's the same idea, raise some money for the group and bring awareness by walking in the asu homecoming parade.

this morning our little family took the light rail down to asu and even though i didn't think we were going to actually walk in the parade, we did. at first maya was fast asleep (she woke up quite early). her power nap ended just in time for the parade. it did seem that she enjoyed being in her dada's arms and seeing the crowd. i think next year will really be a treat for her because she will be able to get around and interact with others.

our very supportive friend came with us and made it even more special. it was a great adventure, complete by us taking a round trip light rail ride and having lunch together afterward.




halloween:

this is our second year of halloween with maya. even though i know maya is too young to know what halloween is all about it was a nice experience. there is something really cute about little kids dressing up. it is a time when make believe is accepted (and rewarded with candy). i think maya did rather well in being patient with us while we collected candy for her.

at the end of the night when we stopped off at our neighbors house for our last trick or treat, maya was offered the bowl of candy. we encouraged her to take a piece of candy and sure enough she took two chocolates and dropped it right into her pumpkin basket. we all cheered.
that was the best ending to my day.

Friday, October 30, 2009

31 for 21, Day 30: highlight of october

i've been trying to figure out what to write today...i can't believe that i've actually written everyday this month. wow! and now october is about to end. this month has just flown by. so many cool things have happened this month. the one thing that stands out for me is maya's cruising. i may sound like a broken record but this is just so exciting.

the idea that maya is asserting herself by pulling up on the furniture is very liberating. many people might not realize how tiring it can get to have to pick up and carry a toddler everywhere. when i see other kids i know turn 1 and begin to walk, i just say to myself, "be patient, this will happen soon".

for a 19 + month old she is doing really well, i think. i can see that she is getting more adventurous and daring day by day. she is pushing herself and in a way she is fearless. i love it when she tries to climb over me or into the bouncy house at gym class. it's just too cute.

i can see the light at the end of the tunnel and it's looking pretty bright!


video

Thursday, October 29, 2009

31 for 21, Day 29: the great story campaign



i love the idea of a place where people can inspire others. at the national down syndrome society there is a place to do just that. it's the "my great story" campaign. on this site you can submit a "great story" about yourself or someone you love who has down syndrome. what a great way to show off all the wonderful things that people with DS do!

ndss also produced a couple of videos showcasing two incredible self advocates, sujeet desai and sara wolff.

i might have mentioned sujeet desai in a previous post. i have seen him perform and speak live. at the time i was very new to the down syndrome world, maya was only 2 months old. i have to tell you the first moment i was in sujeet's presence he took me by surprise. it was my first DS event and i didn't know what to expect honestly. as my husband and i walked through the door of the lecture hall, sujeet was standing there, greeting everyone. i couldn't help but watch him while he was being introduced. here was this man, dressed in black slacks and a dress shirt, his cellphone was clipped to his belt. there was so much confidence in his stance. he was so calm and professional during his part of the lecture. sujeet and his mother were very uplifting speakers and gave great information on how to help our children excel. i will never forget that experience. it gave me hope when i needed it most.



Wednesday, October 28, 2009

31 for 21, Day 28: down syndrome awareness


a friend of mine who i met on facebook posted on her status something that really made me think about down syndrome awareness. she was referring to the article, Three babies aborted every day due to Down syndrome, that was published in the telegraph yesterday.

while i was reading the article i felt sad that so many people are afraid of having a child with down syndrome. so much so that they would terminate their pregnancy. honestly i don't want to judge anyone who makes that decision but i think part of the issue here is awareness. when i was pregnant with maya no one told me what it would be like to have a child with down syndrome. i had various ultrasounds and in the end it was so vague and inconclusive. they told me i had a 1 in 267 chance and that maya had "sandal toes", that was all. since we didn't want to have the amniocentesis they didn't seem to discuss the possibility with us further. we decided on our own that it didn't matter if our daughter had DS because we weren't going to abort. that was our personal choice. it wasn't until i saw her for the first time that i knew, without a doubt, that she had down
syndrome.

i've had a couple friends of mine who are pregnant ask me questions about what they told me at the ultrasounds. it seems to me that the doctors aren't really talking about the possibilities and what it means. i just don't understand why this is so.

i wish that someone had spoken to us about down syndrome and prepared us for our journey. perhaps it wouldn't have been so sad when she arrived, perhaps i wouldn't have had to grieve about not having a "perfect" baby on her birth day and perhaps everyone would have accepted her with happiness instead of worry.

everyday i am so grateful for our daughter. maya is a pure gift. the fact that she has down syndrome only enriches my life. i can't even imagine who she would be without her extra chromosome. i'm not saying that there aren't hard times. of course any time you have a child there are worries and challenges. personally i feel that part of the difficulties of having a child with DS is due to our society's lack of acceptance. under the surface there is taboo still associated with down syndrome. i see so many examples of people with down syndrome doing amazing things, musicians, artist, public speakers, etc. people with down syndrome give back to the community in just the same way as people without DS. if they are given the opportunity, they shine.

i wish i could reach people who are wondering what down syndrome is about and tell them, not to be sad for me. don't be sad for maya. our life is not bad at all. in fact it's quite the opposite, it is very wonderful. there are things that i have learned only because of maya and i would never change that.

i truly believe that the more we accept people with disabilities, the more we realize that there are more similarities than there are differences.

(check out these more alike campaign videos from the national down syndrome congress. i just love them!)


Tuesday, October 27, 2009

31 for 21, Day 27: swinging


today maya and i went to the playground with a friend and her son. it was the first time maya experienced the joy of swinging. the other times we had gone to a playground maya was too young and couldn't get on the swings or slide.

it was so neat to see the wonder in her eyes as i placed her in the swing. she immediately placed her hands on the sides and held on. i pushed her a little and soon she realized that she was swinging. once i pushed her higher and the wind started to hit her face she was ecstatic. she was so giggly. her laugh was just a delight. i didn't have a high end camera to capture the moment but i recorded her fun from my phone.

there is something that is just magical about hearing your child laugh and be happy. i want to make maya laugh like that everyday of her life.

video

Monday, October 26, 2009

31 for 21, Day 26: vitamins

i found this site with the help of some other mothers on our ds network. i thought i would share it in case others are looking for similar vitamins. we started maya on the Nutrivene-D Advanced Antioxidant Daily Supplement formula and DHA liquid a few months ago. so far things seem to be going well.

there is more info at this site about other vitamins they
recommend including zinc, vitamin d and probiotics. i like the fact that they specialize in nutritional needs for children with special needs.

Nutrivene-d

here's an interesting article from Dr. Leichtman where he discusses the use of particular supplements in people with down syndrome.


Sunday, October 25, 2009

31 for 21, Day 25: teething, standing and kissing


teething:
teething isn't especially fun but i look forward to having more teeth in maya's mouth for chomping. last night was tiring because she could not sleep very well. in the end i brought her into our bed and finally she feel asleep. she looked so peaceful sleeping next to us. i like to think it was comforting to have her parents next to her.



standing:
several times today maya pulled up to stand and did some cruising. every time i find her standing next to the fireplace, the couch or bench i am amazed. this is what we have been working toward for so long. i will never forget this feeling of accomplishment. i'm sure there will be many more to come.


kissing:
this morning maya gave her dada at least 10 sloppy kisses. she kept pulling his face to hers, opening her mouth and licking his face. in return he kissed her fluffy cheeks. it was so precious to see. i wanted to get a video so badly but i suppose some things are better left in our memories. at that moment all i could think about was how lucky i am to have her and how i could not imagine a world where she did not exist.

Saturday, October 24, 2009

31 for 21, Day 24: new car seat


maya moved on to a front facing seat today. strange how it takes a lot of work to figure it all out but in the end it was all worth it. maya was really perplexed at first. she wanted to get out because i think she thought that she was in another car, not her own. after we strapped her in and told her we were going bye bye, she seemed to accept it.

for the last few weeks i have been battling maya when putting her into her rear facing seat. she constantly was trying to turn around while i strapped her in. believe it or not she is a strong little bugger. we had bought her the seat when she was around 13 months old but didn't switch over because of her weight. finally she has reached 20+ pounds and with her recent antics, it was just time to switch.

i think it will be great for her to see everything. already she is very interested in looking around at the other cars. now she can enjoy the ride much more.

the below photo was taken on our first ride with her new car seat. photo by: d.s.


Friday, October 23, 2009

31 for 21, Day 23: pumpkin patch



our little family had our very first pumpkin patch experience today. we braved the 90 degree heat to get a few photos and decorate a little pumpkin for maya. ironically our friends we met there also commented on how this was their first experience. it was nice to go with others that also were new to this.

maya of course didn't think too much about all the pumpkins around her, she was more interested in eating the hay. i think she's still a little too young to understand what these events are all about, but i'm still glad we went. this is what families are supposed to do...experience the holidays together. these are the things i missed out on when i was a kid. our family never went to a pumpkin patch or carved pumpkins. because of this the experience is even more precious for me. i get to share it with my own little family.



Thursday, October 22, 2009

31 for 21, Day 22: a day in the life of maya

almost every night i go to bed wishing i had more time, feeling like i could have done more and making lists for the next day. i'm finding there is a fine line between getting things done around the house, doing things for maya's education and rest. many times i have to remind myself not to feel guilty when i do get some time for myself. i guess i thought i would have more time to do project after project at home once i became a stay at home mom...but than again i have a 20 pound being in my company from morning to night.

when my husband asks me, "what did you do today?". i often feel like time just flew by and i can't even remember what i did. so here's a recap of what maya and i did today.

maya woke up (from a full night of sleep i might add) at 7:20 a.m. after breakfast we went to the
library for story time. maya loves the songs, parachute play and bubbles at this location. it's a little out of the way but it is so worth it. on the way home around 10ish, maya fell asleep. i decided to go to the mall to get some shopping done while she slept. i was able to purchase a pair of jeans for myself, two pairs of maya's first "real" shoes and 6 pairs of socks from stride rite. i also found an awesome deal on some soft blocks that i've seen for $25 for only $9. couldn't pass up that deal!

after lunch maya played on her own while i made a few phone calls and got her laundry started. at 2 p.m. maya's ot (occupational therapist) came. maya did really well. she stacked many of her blocks for us, scribbled on her magna doodle and did some puzzle work. the ot was very impressed with her concentration and progress.

shortly after ot, maya took a second short nap. i got to watch top chef and yesterdays news
(thank goodness for dvr). after a small snack it was time to hit the road for our music play date at a friend's house. it was so wonderful to see her interacting with the music teacher. only one other child was there so it was almost like a personal session. maya even stood up on her own when a big tub full of drums came out. yay!

at 6:30 p.m. we met husby/dada for dinner at a restaurant we've never been to before. it was a nice little vegetarian place called green. then it was off to home for bath, reading and bed. now i'm working on finishing up her laundry, washing her cloth diapers, writing this blog and if i'm lucky i'll get to catch up a little on facebook before i go to bed.

it was a good day.



Wednesday, October 21, 2009

31 for 21, Day 21: obstacle course

this morning maya's pt (physical therapist) did a little rearranging of furniture in our house. she was so excited to see maya cruising on her own. just last wednesday we were struggling to get her to cruise and pull up...now she is doing it all by herself. when i placed maya by the couch and she pulled up and immediately started to cruise i looked over to the pt and saw the happiness in her face. that made my day!

to keep up the momentum we have connected our two couches, to our ottoman, to the fireplace, to another chair so that maya can cruise the entire living room. then we placed all of her toys and books on the furniture to motivate her. it worked! she was cruising the giant "u" shaped obstacle course while we were creating it. she even handled the transitions between the furniture rather well. it was awesome to see.

later i wished i had recorded the whole event but it's just so hard to get out the camera as it is happening. i will video and photograph soon though. i can't miss this chance to show her family and friends all the great progress she is making.

Tuesday, October 20, 2009

31 for 21, Day 20: see and learn

i found a website that seems like a wonderful resource for teaching reading to children with down syndrome. one of our down syndrome groups here hosted a flash card making workshop several months back. in the session they mentioned the techniques taught here.

i don't have much experience with teaching reading to children in general so this website really seems like a gem. the see and learning webpage is associated to the down syndrome education organization (downsed). this nonprofit does amazing research to improve education for children with down syndrome.

from what i have learned, children with down syndrome (and many typical kids like myself) learn better through visual activities. the See and Learn Language and Reading website gives a step by step guide on how to play and teach using flash cards.

they even provide the flash cards free. you can download the entire document and print it up yourself at home or you can purchase the kit at their online store. i like the idea of making my own flash cards eventually but this seems like a good foundation to start with. i can't wait to get started!


Monday, October 19, 2009

31 for 21, day 19: things that happen in and around the bathroom

today when i came back from running errands, maya's respite provider told me that maya crawled over to the bathroom on her own, sat down by the shut door and signed "potty". i've seen maya do this a couple of times before but i thought that maybe it was just pure luck. i'm so excited that she did it with someone else. now i know that i'm not just hoping she is getting the idea of potty training she is getting it. to top it off later in the evening, while maya was watching signing time, my husband said that maya crawled to the bathroom door and signed "potty". way to go maya!

another cool thing that happens in the bathroom is maya pulling herself up next to the bath tub. she loves taking a bath and watching the water being prepared for her. a few months ago she started to kneel next to the tub and now lately we have been working on getting her to pull up to standing position. i think she has caught on. today when i undressed her, she immediately crawled over to the tub and pull herself up to stand. very cool!

Sunday, October 18, 2009

31 for 21, Day 18: all for maya!

we finally put together a shelf unit for maya's playroom! it was a major project this whole weekend.

when we didn't have a child our house certainly looked a lot different than it does now. we didn't have all these toys laying around. we didn't have cushioned edges on the fireplace or childproofed outlets. now it's like second nature that we don't put things low enough for maya to pull onto herself. life certainly changes when you have a child.

our front room, what was once the formal sitting room, often sat empty. about 99% of the time. now that maya is here we are in it at least twice a day, whether for her therapy or just play. so we have taken the big step in adding a huge wall unit to it. it's basically all for maya's stuff.

today while i was working out, i was thinking about how life has changed. in many ways i've struggled. having a child with down syndrome has changed me in many ways. most importantly my life has changed because i am a mother. i always knew there was a big responsibility to being a mother. this is why i waited so long to have a baby. surprisingly i don't mind the fact that i put my daughter first in my life. it feels right.

while i was sweating at the gym today, struggling to pull the handles on the row machine, i thought about why i want to get back into shape. my reasons for being healthy are very different than they were a few years back. now i don't think about looking skinny, i think of maya. i literally visualize her face and it makes me keep moving. i want to be here as long as i can for her. i want to get healthy so i can enjoy life with her. she is my motivation.

life certainly changes when you have a child...for me i think it's a good thing!

Saturday, October 17, 2009

31 for 21, Day 17: leaps and bounds



did i tell you that maya is cruising?! she really is! i'm sure i mentioned it a couple of days ago, but i can really see it now. just in the last two days i've noticed so much progress.

at gym class in the morning she crawled through a tunnel! she stopped in the middle and had a little conversation with a classmate. of course she tried grabbing her hair twice. luckily the other little girl had no big reaction. then maya moved on through the tunnel. it was cool!

later in the afternoon when we went to the play area in the mall, she was actually cruising from one end of the bench to the other. she was trying to get to a purse. for some reason she loves bags and purses.

then today while we were lounging around at home i stood maya up at the couch and she immediately started to shuffle her feet to the left. she was really working hard to get to her favorite book, "the wheels on the bus". it was awesome!

the icing on the cake was when she crawled over to the fireplace, pulled up to stand and reached for the nesting blocks without anyone helping or nudging her. she proceeded to sit down and stack 4 blocks on her own. i have never ever seen her do that before.

it was just glorious!

Friday, October 16, 2009

31 for 21, Day 16: dance your dreams!

a friend of mine through facebook posted a link to this place a while ago. i wanted to write about it and share the info because it seems like a wonderful program. "Dance Your Dreams! is a dance program that provides dance education to children who cannot participate in mainstream dance education due to physical, mental or emotional disabilities."

maya loves dancing and music and i could totally imagine her participating in a class like this if it was offered here. i love the idea that there is a place where children with physical disabilities can go and be free to express themselves in their own way. as much as i believe that maya should be a part of the typical society and activities, i also believe that she should interact with her special needs peers. i think there is a balance to being in both worlds in a way. i'm new to this part of the journey since maya is not in school yet. the only experiences i have right now are in community center classes with only typical children. it would be wonderful if there was something like this offered in our community.

Thursday, October 15, 2009

31 for 21, Day 15: reading on the potty

i'm not kidding you when i tell you that maya likes to read on the potty. she often asks for a book the moment we settle her on her little training seat.

now a new development has occurred: she wants to hold the book all on her own. she usually asks for the book and will pull it away from you and sit it on her lap. it's very intentional. i think this is so cute and i love that she is already showing independence.

we are thinking it might be a good time to buy a table and chair set so that she can sit there (instead of the potty) to read. even though about 80% of the time when she signs potty she actually has to go, there are those moments when i think she uses the potty to read her book. either way, it's a win win i figure. potty training and books, seem like two good things to me.


Wednesday, October 14, 2009

31 for 21, Day 14: little by little

this week maya has been been making great progress with her standing, walking and cruising skills. every day, for the last few months we have been working on these parts of the puzzle for 3-4 months. although maya has been able to take several steps while you hold her hand, we really have to work at getting her to stand on her own.

most of the time it takes puffs or signing time to get her to pull up to stand or cruise. oh and also water, she loves watching the bath water and getting wet. i struggle a lot with trying to find things that interest her. she is good at distracting herself if she can not reach the object i am dangling in front of her.

maybe it's just me, but i seem to see some change in her lately. she has become more adventurous especially when it comes to climbing over us or standing on the couch. tonight as we worked on standing by the couch i tempted her with her flash cards. the floor looked like a wreck at the end of it because she loves to fling them everywhere but it was so worth it. while i played her music on our laptop i noticed she stood there, without my help, for 4 songs straight. i even pushed my luck by getting her to cruise. sure enough she cruised from one end of the couch to the other without one bit of my help. this was soooooo cool. it was just glorious to see her little legs moving tentatively over to the left, one step at a time. she really made my day.

as time ticks by and we work over and over with these actions i just have to remind myself that she will do it when she is ready. i have to encourage her, tempt her and show her the way. even with all the therapy i have to remember that she has to work harder than others. physically she has to work harder because of her low muscle tone....but as always she will get there little by little.

Tuesday, October 13, 2009

31 for 21, Day 13: maya turns 19 months




today is maya's 19th month birthday!

what can i say, my little baby is growing up. so many things about maya surprises me. she can be a little rascal sometimes like when she knows she is not supposed to do something, she works even harder to do it. she giggles to herself while she crawls towards an open door or smiles while she reaches for the remote. i really see maya's personality coming through like a shining light. she is my sunshine!

one of the latest developments is that maya has been allowing me to hug her without too much protest. she is not usually a cuddly person but lately i've been able to hold her in my arms and kiss her soft cheeks. i especially like to kiss her little feet and toes. one day she will be too big for me to do these things. she will be a teenager and hate the idea of me hugging her and kissing on her. i suppose you could say i'm taking full advantage of the time i have with her.

Monday, October 12, 2009

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!


Sunday, October 11, 2009

31 for 21, Day 11: making the invisible visible


i found this really cool site, just by chance, that features films/videos about people that have developmental disabilities. some are documentary type films, others are music videos from musicians, and they even have full feature films. i love the idea that there are filmmakers trying to discuss and bring awareness to the public through this venue. to me there is nothing stronger than an image and even better a moving image.

the NYC non-profit organization has been having film festivals since 2003. and they even sponsor a touring film festival so it is accessible to any city. if you are into the arts this is one way to bring awareness to your community.

on the site you can watch previews of the video and sometimes the full video is available. i think there is some real cutting edge work here. for instance the feature film Mr. Blue Sky, explores an unconventional love story and the documentary Ups of Downs, stars a rebel and artist who happens to have down syndrome. there are so many more videos that seem amazing. i can't wait to see more of them.

sprout film festivals / making the invisible visible

check out their past film schedules. it's awesome.




Saturday, October 10, 2009

31 for 21, Day 10: music play


a couple of days ago our little family went to a music playgroup. maya loves music and i'm always trying to look for new venues to get her involved in. we have taken some music courses through the community centers and i have seen really amazed by the results. i'd really like to learn more about how music therapy can help maya. research has shown that music therapy helps with concentration and alert thinking among other things. i can totally see this with maya. her attention span is a hundred times better when music is playing.

during our little music session i noticed that as soon as the guitar came out she went over to play it. when we took the other music class before, she didn't have much interest in playing the guitar so to see that really put a smile on my face. even more so i saw her go from an observer to a participant in one hour. at first she was watching everyone very seriously, and after a few songs she started to clap and dance. she was right there

when they took out the shakers and she didn't throw them around like she using does. she was shaking them to the music. it was really awesome to watch.




Friday, October 9, 2009

31 for 21, Day 9: tooth #4

a few days ago i discovered that maya is not just getting her 3rd tooth, but also her 4th one. i just happened to discover it on monday evening when i was feeling around for tooth #3. (a very dangerous act to do because of her super jagged bottom teeth and her willingness to bite just about anything). the 4th tooth had just broken through the gum so i wasn't a 100% sure until wednesday night. turns out maya also realized she had a 4th tooth by discovering she can grind her teeth together. uh oh. luckily she hasn't done it since.

while i was putting maya to sleep tonight i was thinking about the hard road ahead. this week she has been waking up 3-6 times during the night. i'm thinking it's all because of the teething. and i'm sure it will continue off and on until all of her teeth are in. who knows how long that will take. in maya's case because she has down syndrome there has been a delay in teething. so i am grateful that she is finally getting in those teeth but on the flip side i'm not looking forward to dealing with "needy maya". while she does seem more loving towards me (ie: licking/kissing my face when she climbs over me) she often demands milk the moment she gets close.

more than anything i know that all my sleep training has probably gone out the window. all the books say, don't sleep train if, a) the child is teething or sick, b) visitors are in the house, c) there are other changes going on in the home...well you get the point. my question is, when IS it a good time to sleep train?! it sure seems like a small window of opportunity. nevertheless i've done it once before, i will do it again.

anyway, i say hooray for maya. she's finally getting in her teeth. my mission lately has been to try and photograph her with those teeth. so far it's seems almost impossible. she moves so fast and without warning.

i'd like to capture how different she looks with teeth. they are cute and dangerous things. two little mount everests poking out from her little mouth. it looks like my baby girl is growing up.

Thursday, October 8, 2009

31 for 21, Day 8: books, books, books

in the last few weeks i have discovered that maya has developed a liking to books. at first she mostly enjoyed grabbing the books from the shelf and throwing them all over the place. very often i would find her in her room surrounded by a pile of books. it was very cute to watch.

but now she is more and more interested in flipping the pages of the book. she does this over and over to certain ones. she has her favorites i think. i give most credit to her respite providers. they have been reading to her every time they meet. i'm awful about that, except when we are on the potty (we have a book about the potty to read as she sits there) and of course her dada reads to her at bedtime. this last week she started to sign "book" every time we sat on the potty. most of the time we read it three times back to back and when i put it away, she often gets mad at me.

she really enjoys sitting on someones lap as they read to her, so i get some cuddle time out of it also. there is something to flipping the pages back and forth, feeling textures and the peekaboo books. today i read/sang to her from the wheels on the bus book. i think she really likes that one because it combines two of her favorite things, books/pictures and music.

i'm really hoping we are able to keep this up. i wasn't a big reader when i was young. i didn't go to the library all that much until i was driving my own car. and even that was for school research. i didn't read much for leisure and i hate to admit i often used cliff notes to write my papers. i'm hoping that i can instill something different in maya. it would be so cool if she enjoyed reading. i can see that it would open up a whole new world to her. and just like everything else, when it comes to maya, i would also benefit from it. ;)

Wednesday, October 7, 2009

31 for 21, Day 7: buddy walk/step up for down syndrome

this is pure advertising but at least it's for a good cause. this year we are raising money for the DS Network group. last year we raised money for the Sharing DS group. i honestly don't know why there are two groups in this town, probably some politics that i'm not aware of.

i figured i'd raise money for DS Network because i've been interacting with them a little more this year. they have been trying to host more educational events and they also have an online message board which i find very helpful. we probably will go to both events since its one of the few ways we connect to our down syndrome community here. if you feel like giving a little money for a good cause, here's where to find our team: Dream a little Maya

check out this photo from last year. maya has grown so much. i can't way to post the newest buddy walk photos of her.

Tuesday, October 6, 2009

31 for 21, Day 6: the creed

i had seen this creed once before but when i saw it on Bethany's blog (Life with Bubba, Chicky and Nika) it really hit home. thanks Bethany for writing about it from your heart.

i started to write a few thoughts i had about the poem, but then i decided to just erase them. i think the words below speak for themselves.


The Creed of Babies with Down Syndrome


My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

Monday, October 5, 2009

31 for 21, Day 5: protective mama

tonight, we found a live scorpion in our house. being that it is arizona its not a crazy thing to see. but it's been two years that we have been here and we haven't seen the little scary beasts around yet. well there it was, just hanging out in the living room. very still, playing dead. dang!

luckily maya was no where near him. otherwise she probably would have reached out and tried to pick him up. she has this habit of trying to put anything she sees on the floor into her mouth. and she is moving all the time, looking and seeing things that almost no one would notice unless they have eagles eyes.

so of course when i saw that scorpion my heart stopped. this is something i have very little control of....my daughter crawling around the house...scorpions coming into our house, it's a recipe for disaster. the protective mama immediately came out of me. i must do something to protect my daughter. i don't want her to get hurt in any way. wow, it was a strong feeling. stronger than anything i've felt since i've had her. it seemed to have come from my gut. it wasn't something i logically processed, it was instinct.

being a mama is the hardest job i've every had. i'm sure i've said that before and i'll keep saying it again and again. everyday i learn a new thing about my daughter, and at the same time i learn something new about myself. most often it is something i don't want to even begin to write about. =)

tomorrow, i'll be calling someone about how to seal our house. how to stop those little creatures from coming into our home. i can only think about one thing right now - protecting my daughter.

Sunday, October 4, 2009

31 for 21, Day 4: end of summer fun

today we had some friends over for breakfast. it was so nice out (no triple digits today, yay!) we actually sat outside for a while and enjoyed the day. we took out the water table for the first time for the kiddos to play. maya stood for a little while by it and had some fun. it was so nice to see her standing there on her own. it's often a chore for me to make her stand or cruise. but today she willingly stood and played with the water. seeing her little feet on the ground was such a delight for me.


Saturday, October 3, 2009

31 for 21, Day 3: signing

today i wanted to take note at maya's communication accomplishments. i often forget how much she has learned these last 6 months. she started to sign, if i remember correctly, a little after her 1st birthday. ever since then she seems to have taken off like crazy. i have to thank her favorite show, baby signing time vol 1-4, and just recently she has graduated to signing time vol 4-6. she honestly learns so much when she watches them.

what i noticed is that she accumulated words in spurts. at first it was the basics, like milk, more and all done. those are still her favorite words. but then she started learning words i never could imagine, like music, time and me. she has recently fallen in love with the abc song and is trying to sign the letters. i think she has x and z down now. she also loves the rainbow song which i try, most often off key, to sing to her at least 5 times a day. this girl loves to sit in front of our dishwasher and sign to herself every day. sometimes if she is allowed into our bathroom she sits in front of the mirror and does the same. i don't always know what she is saying to herself, but it sure seems like a lovely conversation she is having.

below i wrote down all the words that she has in her vocabulary. i tried to add them in the order she learned them to see her progression. while she doesn't sign these words "perfectly" she signs them while we use flash cards, reading or spoken word.

milk
more
all done
eat
play
hungry
music
bubbles
ball
baby
signing
time
hat
stars
sky
shoes
socks
outside
day
rain
wind
sun
cold
dog
cow
bird
duck
cat
horse
tired
wash hands
bath
friends
potty
no
nice
water
cracker
banana
apple
sheep
car
dad
mom
flower
ice cream
bread
stand
dance
brush teeth
please
rainbow
colors
red
orange
blue
tree
bus
book
home
me

Friday, October 2, 2009

31 for 21, Day 2: third tooth is here!



this week, i finally mustered up enough courage to stick my finger into maya's mouth to see if she was indeed teething. these last couple of weeks she seems to have the classic symptoms of teething (chewing on her hand ever minute she can, a runny nose and refusing to eat even her favorite food, toast). only the runny nose and the refusing of toast started to make me think this was really the moment of truth. it has taken most of this year to even get out the two teeth she has. and after the last one, it took about a month and a half for it to finally be seen, i was starting to wonder if something nutritional was missing in her diet. because of my concern we started to give maya supplements. more on that later. well i'm happy to report that her third tooth is finally here. i could feel the little ridges of it breaking past her gum just this week.

whoohoo! i can't tell you how this makes me feel. mostly happy of course with a little dash of sadness for all the pain and lack of sleep she and i will have to endure. but overall i'm excited. just the thought that she might have 3 teeth soon makes me smile. this means more are coming and one day in the near future she will be able to eat "real" solid foods. it sounds strange maybe to some, but you can only do so much with pureed or baby foods. i'm no expert at feeding a toddler, but when your toddler only has a couple of teeth, it sure does limit your options.

anyway, maya's feeding therapist says that she is doing just great. she is starting to chomp and she loves the crunchy stuff. i never thought i'd be so worried about how my daughter eats...yes, what she eats i figured that much, but not "how" she eats. i can't help but think about how learned our behaviors are, even when it comes to eating. the way a tongue moves in a mouth, side to side, up and down, thrusting motion, it makes all the difference in the world to the awareness of the placement of food.

when maya graduated to puffs, well i was so relieved. puffs are magical, they taste like cheerios, but they melt in your mouth. they are portable, they are dry, not wet like baby food, and maya just loves them. lets just say it makes my life a lot easier. i dream of the day when she can hold her own snack up and eat them on her own. it's actually quite ironic the little things that make me happy now. in this case, puffs, snack cups and maya's brilliant three tooth smile.

Thursday, October 1, 2009

31 for 21, Day 1!



Get It Down; 31 for 21


i think i can do this. at least for one month i will try to write one entry a day for 31 days. seems like it would be simple, i should have lots to say. at least that's what i thought last year. but i chickened out because it just was too overwhelming still. it's true life is pretty hectic but i just need to realize that what i write doesn't always have to be heavy or wise....just honest. Tricia at Unringing the Bell hosts the Get It Down: 31 for 21 challenge. hope whoever reads this blog also joins in.

so here's something that happened today that i really liked. a little snippet of my life.
maya and i went grocery shopping this morning and upon arriving home, when i opened the car door to get maya out, i found she had fallen asleep. her sock monkey was clinging to her car seat. it's a position i have seen her sock monkey in many times before. he usually pops out of the car and onto the road the moment i open the door. but today he was holding on, almost as if he was perched there, watching her sleep.

when i looked closer i noticed that maya had her little hand on the sock monkey's hand. i'm pretty sure it was an accident. she hasn't grown attached to anything yet, no lovey or anything like that. but it was still a tender moment in my book.