Wednesday, July 30, 2008

i love someone with down syndrome

a few days ago i added my license plate to my new car. it's a personalized plate which reads, evrfwd. it's a rare thing to see any bumper stickers or emblem that might show something personal about me on my car. having that license plate was a big statement for me, which i had added in 1997. before that i think the last time i had a bumper sticker on my car was when i was 17. i believe the sticker said something in reference to "save mother earth".

now in 2008 i've decided to add something else to my new car. it might not seem like a big deal to many people. it's not a bumper sticker, it's simply a license plate frame. it reads, i love (heart) someone with down syndrome. this frame was given to us by a local down syndrome support group. they gave us a wonderful packet of books, dvds, and this license plate frame, among other things. it's been four months since i received it and i went back and forth about "posting" it on my car. when we got this new car, i thought to myself, it's time to make a decision. i was surprised when i thought about it how quickly i came to the conclusion of adding it. there wasn't much to it because i truly feel proud to display this saying on my car. it just feels right.

so often i am reminded of how maya has changed all of our lives. she has touched us in the tiniest ways. one of my friends told me a couple of months ago that she saw this license plate frame on a car, it was like she related to that person or maybe maya was lingering in her mind somehow...because i'm sure that months before she wouldn't have seen that frame or even given it a second thought.

who knows maybe putting this on my car will bring awareness to others. perhaps it might even make a new parent feel not so alone. after all there are people out there with children, friends, brothers and sisters with down syndrome and they are loved. it seems like a good thing to share with anyone who might be behind me in traffic.

Saturday, July 19, 2008

road map to holland

i've only read a handful of books from beginning to end.  don't get me wrong i have tons of books, many of them follow whatever interest i have at any given time.  probably my largest collection is between art books and meditation books.  now it seems i'm building another kind of collection, you guessed it, books that have anything to do with down syndrome. the majority of my time with books is about learning something.  i don't usually find myself reading fictional books or biographies.  i do however love to skim through books that offer information, something i can use to better my life.  but lately among my stash of educational books on down syndrome i have been starting a collection of books that tell a story.  

the book that i can say i've read from cover to cover just recently is  Road Map to Holland: How I found My Way Through My Son's First Two Years with Down Syndrome, by Jennifer Graf Groneberg.  i have to say i did most of my reading while expressing my breast milk for maya.  at first it was just something i could do while sitting there for 20 or so minutes.  but after a while it became something i would look forward to because the story
 she tells, well i could relate to.  there were scenes in the book that felt just like my life.  and it gave me things to think about.  i've been thinking that this is what makes a good book.  of course i've been wondering if anyone who does not have a child with down syndrome would read this book. but there must be a big audience because i noticed while doing my search for books about down syndrome that there are a lot out there.  the range covers personal accounts of parents with children with down syndrome, children's books explaining down syndrome, to more technical books on how to help your children excel.  it's very encouraging to see all these books.  

i really enjoyed road map to holland because the author just seems like a regular person, just like me.  and the sharing of her experience really helped me not feel so alone.  she also has a blog named pinwheels which i try to read when i get a chance.

Monday, July 14, 2008

sign language and maya

i've been trying to sign to maya every chance i get. at first it felt kind of funny, because well, it's not like she is looking at me all the time. but lately she is looking directly at me for longer periods of time so i show her the sign for milk, food and hungry mostly.

from the moment i knew i was going to have a baby i started to dream about teaching sign language to my child. i remember the first time i saw it in person, my cousin was signing with his son. it was so cute seeing his tiny hands speaking back to his dad. at that time i didn't quite understand how useful signing could be, but when i started to think about it, i knew it was a good thing.

and researchers say that signing with babies may boost their IQ.

i've always loved sign language and now i have the most perfect excuse to use it. here is where i have found my favorite signing dvds. it's a series called signing time, of all things. i love this series because the teachings aren't too distracting or over the top. the person who stars in it sings all the songs on the video. she herself signs and then they show a lot of little kids signing the best way they can. it's really sweet.

anyway, i thought i'd share this info because i know when i was looking for a signing series i was very confused as to which product to get. i was so lucky because a down syndrome group here gave us a copy of one of the signing times dvd. i was very impressed and of course i had to order the baby signing time set. the set included 2 cd's with all the little nifty songs that they have created to sign along with. i have to admit i have been singing and signing to them on my own. they are quite catchy songs.

i'm so looking forward to that first moment when maya will use a sign. like the first time i heard her laugh and the first time i heard her coo, i'm sure it will be a special day.

Sunday, July 13, 2008

milestones at four months

today is maya's birthday. ok, it's only been four months. but every day seems like a milestone so right now i count every month. i'm sure, almost all first time mothers do the same thing until their kid is a year old so, why not me?! =)

i've been super excited these last few weeks because i have seen so many changes in maya. we started physical therapy a few weeks ago and it has made such a difference. i'm so grateful for the services that our state provides. because of it we have a physical therapist come to our home once a week. eventually we will have a speech therapist also. i find that i'm learning so much about human development. i have maya to thank for that, among other things.

maya has really blossomed into her own person lately. well, she's always been a social person, but now she giggles like crazy and loves to see everything we see. she doesn't like to be cradled as much anymore, now that she is gaining head control she likes to be on our shoulder and see everything.

one of the things that we have been doing in her therapy time is showing her that she has hands and feet. this is something that others might take for granted...i mean i didn't even know that she was supposed to find her hands and feet at a certain time. but there is a timeline for everything i guess. we had been working on it from the first therapy session. well a couple of weeks ago she started to put her hands together on her own. i was so excited to see this. it felt like a huge milestone. when i think about it, even though it felt like a long time coming, she really learned this trick very fast. the therapist was really impressed with her progress.

now besides just sucking her thumb (which i believe she enjoys more then her pacifier now) she will intertwine her fingers and play with them. she is also starting to grab at her toys. now this is a really big thing because up until last week she didn't have any interest in toys or outside objects unless it was her burp cloth or my hair.

i was thinking this morning that she has come a long way in such a short time. from the NICU (neonatal intensive care unit) needing oxygen and a feeding tube, to a laughing little girl, bursting with energy. she has amazing strength in so many ways. there isn't a dull moment with maya around. i never thought i would be so in love with my daughter. but i am. and i'm certain now that this is what joy feels like.

Tuesday, July 8, 2008

memory keeper's daughter actor, krystal

i saw this movie a few months ago. maya was just home from the NICU and i remember we were sitting watching television when the ad for this movie, the memory keeper's daugher, came on. it's based on a book by the same title. i'm sure the book goes into more detail. (i haven't read it) the movie was pretty good.

anyway, here is an interesting article about the actress, Krystal Hope Nausbaum. i love this photo of krystal and her mom. they really look happy and she just looks so cool in it.

Krystal's Big Break

i have a voice

Sunday, July 6, 2008

self advocacy

here's another site that i'm sure i've told most of my friends about. it's the national down syndrome congress site. my favorite part of this site is the self advocacy section. i love the idea that maya is a self advocate. because she is interacting with so many people she is making a big difference.

a while ago many people with down syndrome were stuffed away in institutions. now they are immersed in the society. it just makes me so happy when i see people out and about. of course now i probably notice it more and more because of maya.

the other day i went to the bagel shop to grab us some breakfast. it's well known that this place, on the weekends, is the stopping point for cyclist. on any given sunday you can see groups of cyclist eating their bagels and drinking some coffee, before they get back on their cycles to continue. i've seen many there with their spandex outfits and bandanna hats. one sunday a couple of weekends ago, i was walking out the door when i saw a young man with down syndrome with a group of cyclists. he was dressed as everyone else was, in his spandex outfit, sunglasses on his head. he looked like he was just one of the guys. i can't tell you how this made me so happy. it really touched my heart. a friend of mine went there a few weeks later and saw the same fellow. he said he saw him getting on a tandem bike with another man. they rode away from the bagel place just as my friend was exiting. now my friend also notices these events and shares the same excitement and joy.

the below page has little snippets of the self advocate council. the people listed here are super inspiring.

self advocate council

Friday, July 4, 2008

Down Syndrome Myths & Truths

we found this website as we were looking for more information about down syndrome. all of a sudden it became important to find out as much as we could about it. even our friends were looking up info on the web. it felt like people were supporting us by learning more about down syndrome themselves.

down syndrome myths and truths

what makes people sad about having a baby with down syndrome? that's the question that i thought about when i had her. why was i crying? was i really sad or just shocked?
some people were sad for us and said sorry, but others said it was not the end of the world. the people that congratulated me were the ones that helped me accept maya. i wasn't a victim, i was a new mother after all.

i suppose our society lends itself to thinking that people with down syndrome are flawed in some way. i mean there has to be a reason why 90% of the women that find out they are having a baby with down syndrome terminate. did i feel like i was getting a bum deal by having her? and if so, how was it that i came to that conclusion? why do we put a negative label on a person with "special needs"? i mean maybe she will show us a different way of looking at what "success" is. it seems that is what i am learning the most about this experience. it's hard to explain but part of me thinks that i am more in the moment because of her. she shows me that it's the little things that make a life worth wild. like the first time i saw her sucking her thumb. i was so happy that she found her thumb and started to suck it that i grabbed my phone and took a picture of it. it's a really dark photo because it was in the night, but still it is beautiful to me.

more than anything i think that maya is an amazing baby. she is mostly no different than other babies...yes, she is on a slower learning curve but i see she already has a sweet personality. she has brought so many people together just by existing. it's only been 16weeks but so far i think she has shown me how wonderful life can be. i never knew that i had an empty spot missing in my heart until i had her. now she has filled it ten times over. i would never change who she is, extra chromosome and all.