Saturday, December 19, 2009

so many blogs, so little time...

i've been spending my last hour surfing around some blogs posted by a friend via facebook. i feel like i've been so out of the the loop for the last month because we have had family in town. first my mom came and then my in-laws. soon my sister in-law and her crew will also join us (minus my mom). it will be a full house to say the least.

maya, her dada and i have all caught a horrible cold. today it will be one week that we have it. we are all struggling to shake it off. honestly maya isn't being that put off by it. during the day she is just fine. it's mostly at night when she struggles with her stuffy nose. last night she woke up all in a panic because she felt like she couldn't breath. it sort of freaked me out a bit. i think this is basically our first real bout with a cold since she has been born. i can't help but think that if i was still nursing this might not have happened. oh well, i suppose it had to come about some time.

so today while i was surfing i came across a blog about people who have adopted a child with down syndrome from ukraine. i clicked on a few links and ended up at Reece's Rainbow and their homecoming page. it is a wonderful deed that these families have done by adopting children with d.s. and even more so from other countries. it's so very sad how people with disabilities are treated around the world. even though it is a hard thing to see i think it's worth it to open our eyes and hearts to others who are suffering. the fact that people are so generous to open their home to a child in need is so heartwarming and an inspiration. there are also others who can not adopt but still support by donating money to help others adopt. i really like this idea.

i have often thought about the idea of adopting a child, way before maya was born, even before i met my husband. now that i have maya of course my focus has changed. but somewhere in the back of my mind, i have a wish to adopt someone who deserves a home. i have always thought there are so many who deserve love and do not get it...and after seeing all the children on this site, i feel it even more so because of the neglect they receive because of their disabilities.

i have enjoyed reading and and viewing photos of these families journey. somehow reading their blogs takes away the mystery of adopting a child. it shows that it can be done. and that it can truly enrich your life.

here are a few:

hidden treasures

the 30 day journey.....for hope
newbold family's adoption journey
the road to nazereth

Wednesday, December 9, 2009

push toy and dancing

it's been forever since i've written. to be honest i'm super busy with family. my in-laws are here and my mom has been visiting us for a while now. not to mention christmas is around the corner...and today was the first day i was able to really shop. yikes! anyway lots going on but just wanted to take note of some great things going on these days.

three weeks ago i finally bought some blue painters tape to put around maya's push toy wheels (her p.therapist's request). it was the best 6 bucks i've ever spent! the moment we taped the back wheels and stood maya on it, she took off! it was so great to see. the weeks before that she was struggling to push it and stay balanced even with the therapists help, but taping the wheels really did the trick. now she is able to push the toy on her own.

video

last weekend we went to a down syndrome christmas get together. of course we had to get her photo on santa's lap. i was surprised she didn't kick and scream right off his lap she just had this awkward look on her face, it was a hoot! after the photo we went outside to listen to the music. i danced with maya in my arms and she loved it. then when i put her down to stand i noticed that she started to lift her legs, bending her knees (which she never does). it was obvious that she was trying to dance. it was so cute. she started taking off towards the crowd as i hung on to her. i was just so happy to see her motivated to walk.



today her p.t. said maybe she will walk by christmas or new years...i won't mind that at all. but to be honest lately i don't feel worried or anxious about her walking. i see her progressing everyday and i know she will do it when she is ready. just like everything she does, she will shine in her own time.

Friday, November 27, 2009

What would happen if people with DS ruled the world?

i love this article by Dennis McGuire. it just tickled me from the inside out. i truly believe that this world would be a better place if there were more people with down syndrome in it.

this thanksgiving we celebrated with friends and family. i kept thinking how grateful i was to have our little maya. my life is so much richer because she is in it.

if people with down syndrome ruled the world.

Dennis McGuire, PhD
Adult Down Syndrome Center of
Lutheran General Hospital
Park Ridge, Illinois

This paper was originally delivered as a plenary address at the conference in Chicago in July of 2005, co-sponsored by the National Down Syndrome Society and the National Association for Down Syndrome. It was well received by the audience, and we have received many requests for a written form of the presentation. In this paper I will try to maintain the spirit and humor of the original.

If I am going to describe what it would be like if people with Down syndrome ruled the world, it may be helpful to explain how I came by this information. I am the Director of Psychosocial services at the Adult Down Syndrome Center in Park Ridge, Illinois, a unique partnership between the National Association for Down Syndrome (NADS), Advocate Medical Group, and Advocate Lutheran General Hospital. Our multidisciplinary team has served the health and psychosocial needs of over 3000 teens and adults with Down syndrome since we started in January of 1992. Our patients have let us into their world, and what a rich and interesting world it is.

Development of the Adult Down Syndrome Center

Before beginning, let me provide a little history. NADS, as the oldest Down syndrome parent organization in the country, had many members who had teen and adult age children. These families found there were few health or social services available to them. Sheila Hebein, Executive Director of NADS, was determined to develop resources for these individuals and their families. She recruited the Center’s Medical Director, Dr. Brian Chicoine, and myself to help develop and then run the Center, and we continue to have a very close working relationship with NADS.

Why us? Brian had some experience in his medical practice with persons with disabilities, but he also did not have a great deal of contact with people with Down syndrome. One could say I also had led a sheltered life. Sheila’s son, Chris, was probably the first person with Down syndrome I had ever met. Still, Sheila seemed to know this would work. The good thing about our lack of experience was that we were able to listen to the families and the people with Down syndrome without any preconceived ideas, assumptions, or biases.

We learned quickly that the families are the experts with regard to their sons and daughters-because they had to be. We view the information we have gathered from families as a repository of their wisdom. We hope this paper will be helpful to families who are searching for ways to improve the lives of their sons and daughters.

What would happen if people with DS ruled the world?

If people with Down syndrome ruled the world:

Affection, hugging and caring for others would make a big comeback.

Despite the fact that my family was not terribly affectionate, I have had a crash course in hugging at the Center. I am confident that if people with Down syndrome ran the world, everyone would become very accustomed to the joys of hugging. Fortunately for me, I had a head start. My wife is a native of Argentina, and I got some intense exposure to hugging when I landed in her country and found there were 6000 members of her family waiting to be hugged as we got off the plane.

All people would be encouraged to develop and use their gifts for helping others.

In our world, too often people with Down syndrome are “DONE FOR” by others, when in fact they are great givers. If they ran the world, their ability to minister to others would not be wasted.

People would be refreshingly honest and genuine.

People with Down syndrome are nothing if not straightforward and unpretentious. As the expression goes, “what you see is what you get.” When you say to people with Down syndrome, “You did a good job,” most will answer simply and matter-of-factly, “Yes, I did.”

We believe, too, that a stuffy high society would probably not do well in the world of Down syndrome.

However, we believe that BIG dress up dances would flourish. People with Down syndrome love dressing up and dancing at big shindigs. They have a ball, and ...can they dance! (and by the way, who needs a date... “Just dance”).

Most people we have met with Down syndrome also love weddings. This should not be a big surprise. They love getting dressed up, being with family and friends, having good food, and, of course, dancing until the wee hours of the morning. (Many people love it so much, they will chase the band down at the end of the night, begging them to continue.) Perhaps, too, part of the reason they love weddings so much is not just because of the food and dancing, but because in many cases the rules against hugging are temporarily suspended. This may give people a little piece of what I experienced in Argentina. Whoa! Can you imagine what the world would be like with so much affection unleashed?

People engaged in self talk would be considered thoughtful and creative. Self talk rooms would be reserved in offices and libraries to encourage this practice.

People with Down syndrome have a reputation for “talking to themselves.” When conducted in a private space, self talk serves many adaptive purposes.

It is a wonderful means to ponder ideas and to think out loud. It allows people to review events that occurred in the course of their day. It allows people to solve problems by talking themselves through tasks. It allows them to plan for future situations. It is also helpful in allowing people to express feelings and frustrations, particularly if they have difficulty expressing their feelings to others. There is even evidence that athletes who do not have Down syndrome use self talk to motivate themselves. Certainly people without Down syndrome talk to their computer (particularly when it crashes), and likewise many people talk out loud when driving in Chicago. (Of course they may also make odd gestures as well; not recommended if long life is one of your ambitions.)

Order and Structure would rule

We have heard that many people with Down syndrome are stubborn and compulsive. Now, I know what many of you are thinking...“Did you really have to bring that up?” I’m sorry, but—we do. What we hear is that quite a few people have nonsensical rituals and routines. They can get stuck on behaviors that can drive family members a little crazy.

Despite the irritations, there are also many benefits to these “obsessive compulsive tendencies.” We actually have termed these tendencies “Grooves” because people tend to follow fairly set patterns, or “grooves,” in their daily activities.

What are the benefits of Grooves? Many people with Down syndrome are very careful with their appearance and grooming, which is especially important since they often stand out because of their physical features. Grooves also increase independence because most people are able to complete home and work tasks reliably when these tasks are part of their daily routine. (And while they are not fast ... they are very precise.) For many with Down syndrome, grooves serve as a way to relax. Some people repeat a favorite activity in a quiet space, such as writing, drawing, puzzles, needlepoint, etc. Grooves also serve as a clear and unambiguous statement of choice (very important for people with language limitations). This may even be a way for teens with Down syndrome to define their own independence without getting into the same rancorous conflicts with parents as many other teens.

So given what we know about people with Down syndrome and grooves, how would they use this to run the world? Here is how:

  • Schedules and calendars would be followed.

  • Trains & planes would run on time.

  • Lunch would be at 12:00. Dinner at 6:00.

  • Work time would be work time.

  • Vacation would be vacation.

At the Center, our receptionist, Shirley, will often have people at her desk pointing to the clock or their watches. Obviously, she hears about it when we don’t take people back at their appointment time, but she also found that some people refuse to go back early: “Nope I am not going at 9:45, my appointment is at 10:00,” nor does going over into the lunch period work. I am sure all of you have similar stories.

But there is much, much more:

  • People would be expected to keep their promises.

  • Last minute changes would be strongly discouraged (if not considered rude and offensive).

  • Places would be neat, clean, and organized (not just bedrooms, but cities, countries, the whole world).

  • Lost and founds would go out of business (even chaotic appearing rooms have their own sense of order).

  • The “grunge look” would be out, way out.

  • “Prep” (but not pretentious) would be very big.

In the world of Down Syndrome, there would be a great deal more tolerance for:

  • Repeating the same phrase or question

  • Use of the terms “fun” and “cleaning” in the same sentence

  • Closing doors or cabinets that are left ajar (even in someone else’s house)

  • Arranging things until they are “Just so.”

Despite their compulsions and grooves, people with Down syndrome rarely have the really ‘bad habits’ that so many of us have. In fact, out of approximately 3000 people we have seen at the clinic, we have not seen any drug addicts or gamblers and just two alcoholics and a very small number of smokers. However, we think that pop may be a common addiction in the world of Down syndrome, and of course some people are incurable savers and hoarders of just about everything, but especially paper products and writing utensils. Because of this, I could see maybe a Betty Ford Center for pop addicts and extreme paper hoarding.

The words “hurry” and “fast” would be not be uttered in polite society. “Plenty of time” would take their place.

At the Center, we frequently hear about pace, or how fast or slow people move. Quite often these issues are discussed in disparaging terms by harried and frustrated family members. In this world, people with Down syndrome have a reputation for having two speeds, slow and slower.

Therefore, in the world of Down Syndrome:

  • Our current mode of dealing with time, also known as the “Rat race” (or rushing around like our hair is on fire), would not survive.

  • Here and now would command a great deal more respect than it currently does.

  • Stopping to smell the roses would not be just a cliché.

  • Work would be revered, no matter what kind, from doing dishes to rocket science.

We have consistently seen respect and devotion to work by people with Down syndrome. This is such a strong characteristic for many that they don’t want to stay home from work even if feeling ill. Perhaps more importantly, they value any kind of work.

Therefore, if people with Down syndrome ran the world:

  • Speed would be far less important than doing the job right.

  • Work would be everyone’s right, not a privilege.

However, we think there would probably be no work conducted during the time that “Wheel of Fortune” is on TV.

All instruction would include pictures to aid visual learners.

Many studies have shown that individuals with Down syndrome have deficits in auditory memory. If they cannot remember verbal instruction, they may be considered oppositional or less competent in school, home, or work environments. Despite this, they have exceptional visual memory-they are visual learners. If they see something once, they can usually repeat it. They also have an exceptional memory for facts and figures of interest (favorite celebrities, movies, music, sports teams, etc).

If people with Down syndrome ran the world:

  • School and work sites would have picture, written, and verbal instructions to accommodate different learning styles.

  • Counselors would be able to use visual mediums to help solve problems.

What About News?

If people with Down syndrome ran the world:

  • Weather would be the only essential news item

  • News would be more local (“A new McDonalds just opened up,” or “A dance tonight,” etc.). After all, what is more important than that?

What About Bad News?

If people with Down syndrome ran the world, would there be wars or murders? We don’t think so! There may be too many McDonalds but definitely not the wars or murders we have in our “civilized societies.”

What About “Behaviors”...

...and terms such as (the ever popular) “Incident reports,” “Outbursts,” “Unprovoked outbursts” (one of our all time favorites), and of course “Non compliance”?

We believe that in the world of Down Syndrome, anyone writing “incident reports” would have to go through sensitivity training, which would consist of someone following them around writing down everything they did wrong. Brian Chicoine and I both figure that we would have been on major psychotropic medications long ago if we had people writing up incident reports on us.

We have found that most people with Down syndrome are very sensitive to expressions of anger by others. I imagine they would do all they could to help reduce and solve conflicts between people.

Therefore if people with DS ran the world:

  • Anger would only be allowed in special sound proof rooms.

  • Trained negotiators would be available to everyone to help deal with any conflicts.

  • The word “non compliant” would not be used (except as a very rude comment). It would be replaced by “assertive,” as in “he or she is being assertive today.”

What About Self Expression?

  • Art and music appreciation would be BIG.

  • People would have time to work on paintings and other art projects.

  • Acting and theatrical arts would be encouraged for all.

Dancing

  • You probably would not hear a great deal about exercise, but you may hear a phrase like, “Dancing tonight ... absolutely.”

  • The President’s commission on physical fitness would probably recommend dancing at least 3 times per week.

  • People would be encouraged to get married several times to have more weddings for more music and dancing.

  • Richard Simmons and John Travolta would be national heroes.

Music

  • Elvis, The Beatles, and the Beach Boys would still be number 1 on the hit parade (Music of the 60’s, 70’s, and 80’s would be BIG)

  • Musicals would be very, very, very, big (such as “Grease,” and “The Sound of Music”)

  • John Travolta would be the biggest star.

Television

  • Classic TV hits would be very BIG and take up at least half the TV schedules.

  • “I Love Lucy,” “Happy Days,” “The Three Stooges,” etc. would be very BIG.

  • Wrestling would be very Big.

  • “Life Goes On” would also be very Big and replayed regularly.

Movies

  • There would be fewer movies, but they would be replayed over and over.

  • Movie theaters would allow people to talk out loud to tell what happens next.

No Secret Agents

  • People would not hurt the feelings of others and they would also not lie or keep secrets.

  • Therefore there probably would be no secret service agents, spies, or terrorists.

The purpose of this article is to give back some of what we have learned to the families and people with Down syndrome who have come to the Adult Down Syndrome Center and who have been so giving and open with us. If people understand more of the special talents people with Down syndrome have, they may be more able to help them use and develop these talents to improve their lives. We also wanted to reassure families of younger children with Down syndrome who are concerned about their child’s future that there is much to be optimistic about.

Saturday, November 21, 2009

a cure for what?

thanks to rebecca at the bates motel for writing about an article posted by the l.a. times. i think rebecca did a wonderful job at conveying her thoughts on the article. she is a much better writer than me for sure!

what is interesting is that i have been thinking lately that i would never for a minute change that maya has down syndrome. in fact i wish there were more people in the world that had down syndrome. personally i think the world would be a better place. i don't see down syndrome as a disease or even a disorder. i don't think we need a cure for down syndrome we need a cure for heart disease, thyroid issues, dementia. but most importantly i think that our society needs to be cured of how we see people who have down syndrome.

even before maya was born i always accepted people with disabilities. of course now that i have maya my feelings have grown stronger. i can't help but see how maya brings life to our mundane world. almost everything she does is a gift...from rolling over, to crawling, signing and sipping from a straw, the list could go on. we work hard for all these milestones and i am grateful for all that she accomplishes. i don't know what it would be like to have her without down syndrome. i wouldn't even want to imagine. she is perfect just the way she is.

Friday, November 20, 2009

naps, bedtime and sleep

this whole week our major new accomplishment has revolved around sleep. as i previously wrote, i have recently given up breastfeeding. in turn our sleeping routine has changed in ways i never dreamed possible.

our night time routine has always been a struggle. between teething and breastfeeding, it's just been hard. i've tried several times to sleep train maya, but most of the time something changes in our schedule and we get off track. it could be traveling out of town or her being too cold in her room, etc. either way she and i have had this off and on battle in getting to sleep without my nursing her. since she has pretty much decided she didn't want to breastfeed anymore, i've had no choice but to be firm with her nap and night routine.

this week what became a new tool for getting her to sleep was integrating a new toothbrush and taking her to the potty right before sleeping. it seems strange but her making her own choices seems to help. she brushes her teeth, with my help, and then i wait for her to ask to go potty. i tell her, "ok, let's go potty and then we go to sleep" (i say this a few times before we get to the potty). once she is on the potty i let her choose what book she would like to read and after see is done (most of the time she actually goes potty), i take her to the bedroom and tell her it's time to go to sleep.

she doesn't like to be rocked in a chair, or cuddled, so she doesn't stay long in my arms most of the time. this last week i have followed this routine to the t. now when i put her down in the crib she lays there most of the time, without crying or growling and then she falls asleep (knock on wood). oh my, what a beautiful thing that is! the silence is blissful!

naps, well that's another story, but we are getting there. she does cry more with naps, but with the same routine being used i'm sure see will get it very soon. and on a side note, i have noticed that she is sleeping through the night more often and her naps are longer.

i was very sad initially about not nursing but now i see that there are advantages! the fact that she can sleep without much fighting is so wonderful.

Wednesday, November 18, 2009

inspiring graduate from spain

thanks to penny a new friend via facebook who found this article and shared it with all of us. it's about a man who is the first person in Spain to obtain a college degree. i really enjoyed this article. when i read about all the great things that people are doing in this world it just gives me so much hope for maya. i don't want to speculate to much on what maya might do when she grows up, but i hope to encourage her to follow her dreams. not because she is "special" but because that is something i promised myself that i would do for my child. i truly believe having your parents support and encouragement is essential to being successful.

Actor, graduate, charmer... Down's man now in search of love

Pablo Pineda: "I am not a child. We are not children." Photo: Jason Borg.

Surrounded by a group of eager listeners, Pablo Pineda, a charismatic teaching expert and up-and-coming actor, argues that the educational system around the world needs to change.

The 35-year-old Spaniard is unique because his insights into child psychology and pedagogy are different, imaginative and thought-provoking.

Mr Pineda is the first person with Down's Syndrome to obtain a major degree from a university in Spain. He is now pushing the envelope even further by reading educational psychology, his second degree.

He was recently in Malta for a seminar on inclusive education for Down's children, organised by Inspire, through which he hopes to inspire parents and teachers to open doors for such children rather than give up on them.

Mr Pineda made international headlines last September when he bagged the Silver Shell award at the 2009 San Sebastián International Film Festival for his performance in Yo Tambien (Me Too) - a film inspired by his life.

In the film, Mr Pineda plays a 34-year-old with Down Syndrome, who graduates from university and falls in love with his work colleague.

In real life, love has eluded Mr Pineda - so far. He feels this is the one major hurdle he has not yet managed to overcome, but he knows it is something he must manage on his own. "Everyone has a right to love and be loved. The one thing I am really scared of is solitude," he says.

Within a couple of days of being in Malta, Mr Pineda had already learnt a few Maltese words. When he was asked to be ushered into another room for the interview, he responded with "nistgħu" (we can).

He says his aim is to show society that Down's children can set goals and reach the targets that everyone else aspires to if they are given the same opportunities.

His parents were incredibly supportive and never treated him differently to his older brothers, except that they kept pushing him to expand his horizons and never give up.

"I am not a child. We are not children," he says, holding his spectacles in his hand like an intellectual.

But then he cracks a joke, his face creases into a beaming smile and everyone around him laughs on.

Although he agrees he is gifted in some ways, he is convinced that if people are rewarded and encouraged they will always be able to do special things in life.

"Sometimes when I meet parents they tell me they want their children to be like me, but I always tell them that everyone is an individual. I don't think they should raise their expectations too high, but they should never limit or confine their children's potential."

Mr Pineda has lived all his life with 'normal' children and he therefore finds it difficult to understand why girls look at him differently.

"It's very complicated. I feel like I am in the middle of two realities," he says, adding that his film manages to capture many of the inner-most feelings that he has always found difficult to express.

However, he feels that the beauty of diversity and human nature is that everyone has some form of disability or challenge in life, and everyone can learn from each other.

"The educational system is based on a wrong premise. There should not be a partition between people who are 'disabled' and people who are 'normal'.

"Some teachers have a tendency to put people with disabilities in a box and use the same model for all, ignoring the fact that everyone has different capabilities."

He adds that education is "too intellectual", using too many books and rules instead of focusing on creativity and imagination.

"Any professional who tells a parent that their Down's Syndrome child will only reach a certain mental age, is making the biggest mistake of their lives. No one ever stops learning. It's a lie," he says.

He advises parents to listen first and foremost to their intuition, and to learn from mistakes, which they will inevitably make. He says Down's children should make an effort to learn everything they can, understand their condition and overcome it.

Mr Pineda thinks people should stop seeing someone like him as having some sort of "deficit" and instead adopt an attitude that focuses on "ability".

The young man's abilities are well amplified in the film currently being shown in Spain. It will eventually premiere around the world.

Friday, November 13, 2009

nursing ends at 20 months...

it's so amazing that 20 months has passed to quickly. well at times i didn't feel that way. the lack of sleep definitely has made it feel long, but otherwise than that it sure doesn't feel like my little baby is fast approaching her 2 year mark.

today when my husband reminded me in the morning that it was maya's "birthday" i started to think about all her latest accomplishments. what stood out for me, what shows me that my little baby is growing up is the fact that she has decided to wean herself from nursing. i don't think it's ironic at all that this last week has been a turning point for maya and i. last weekend she started to bite me while nursing. at first i thought maybe it was just a phase, she has done that before (she only had one tooth at the time). as feedings went on i started to think that she was trying to tell me something. when she didn't ask for "my" milk anymore at bedtime, i became certain that she was ready to move on. call it mother's intuition but the fact that she didn't seem to miss my nursing her, seemed like a sign.

i can't say that i am very happy about this new development. in some ways i can't believe that i've made it this far. i remember that i used to tell my friends, "i'll take it month by month and see how far i get." if i dig deep though, i have to admit that once i found out that maya had down syndrome i became adamant about breastfeeding her. i know that mother's milk carries with it many nutrients that you can't find in formula. the idea that i could give her something that would boost her immune system seemed like a precious gift. i wanted to give maya a fighting chance at being healthy, knowing that children with down syndrome often have ear, nose and throat issues.

when maya was born she was in the nic unit for 13 days. i have to tell you it was very difficult to breastfeed while she was there. she was having trouble feeding from a bottle and wasn't gaining weight. it just seemed so exhausting for her. often she would give up quite quickly. for those 13 days i pumped and delivered my milk to be added to the formula she drank. when she came home i tried only after several weeks, to breastfeed her directly. it took some time to get the hang of it. she latched on pretty well but she didn't stay on for very long. over the weeks she built up her stamina and the rest is history.

so here we are at 20 months. i know i should feel grateful that we made it this far. but still i feel sad. i worry that winter is coming and with the H1N1 looming over our heads, well it concerns me not to have that extra protection. i have been trying to pump my milk and add it to her whole milk, but i can tell that my body is shutting down. nature has taken it's course and i guess it's time this part of our lives comes to a close. i feel very lucky to have been able to nurse her until now. it has been an eye opening experience to say the least and i'm blessed to have had this special time with her.

Thursday, November 12, 2009

inclusion victory


someone posted this through twitter, thought it was a really neat story.

Thursday, November 5, 2009

November is here!


someone asked if i will continue blogging as much as i did in october. well i guess the answer came the moment it turned november 1st and i skipped town. hehehe. all kidding aside, i would love to continue writing as i did last month but it was really a huge undertaking. i'm not quite sure i could keep it up with that intensity for more than a month. what's my latest excuse, well quite honestly i am exhausted.

this last week has been a wash for me. i haven't been able to get things done and prepare for my mother and my in-laws arrival, as i had wanted. husband fell ill with a cold and i'm feeling a bit poorly myself. thankfully maya has not been affected.

so for the last several days i have been taking care of maya 100% of the time (no therapies or respite). this would include bath and reading time in the evening otherwise reserved for her dada. the irony of the whole thing is that i don't mind that part of the day with her. she loves to take a bath and once the wrestling is over in putting her pajamas on, story time can be very calming and sweet. usually i'm just so exhausted by the end of the evening that i don't quite feel i can give her a 100%.

but all in all i think this week has gone well. there are so many stories i'd like to tell you, like the fact that maya has used a straw exclusively this week for drinking milk and that she and i have learned a few new signs this week just by singing her favorite songs, but i need to take care of myself and get some rest. so, i leave you with a couple of stories that a friend (i recently befriended via facebook) posted. i love seeing such positive stories in the news. i felt very hopeful when i read them. hope you enjoy them as well.







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.