Saturday, December 19, 2009
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:
the 30 day journey.....for hope
newbold family's adoption journey
the road to nazereth
Wednesday, December 9, 2009
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.
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
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.
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.
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.
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.
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
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
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.
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!
Wednesday, November 18, 2009
Actor, graduate, charmer... Down's man now in search of love
Sunday, 15th November 2009
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
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
Thursday, November 5, 2009
Saturday, October 31, 2009
Friday, October 30, 2009
Thursday, October 29, 2009
Wednesday, October 28, 2009
Tuesday, October 27, 2009
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.
Monday, October 26, 2009
Sunday, October 25, 2009
Saturday, October 24, 2009
Friday, October 23, 2009
Thursday, October 22, 2009
Wednesday, October 21, 2009
Tuesday, October 20, 2009
Monday, October 19, 2009
Sunday, October 18, 2009
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
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
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
Wednesday, October 14, 2009
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
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
Sunday, October 11, 2009
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.
check out their past film schedules. it's awesome.
Saturday, October 10, 2009
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
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
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
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.