So, I love to dream about making things better. And one of the things that I think about a lot is how poorly our neighborhoods are designed. I hate the stress of trying to walk my dog down the street while pushing a stroller as cars whizz by, but there are no sidewalks in my neighborhood. I hate that my front door opens to a driveway where my car is parked, and that everyone in my neighborhood has houses that face streets, and front yards that they never use. I feel lucky that I have met all of my neighbors, and that my neighborhood is fairly safe and friendly. Not many people have that in America. But that's not good enough. Why do we keep building these sad, uncomfortable neighborhoods? We just keep plopping down squares on grids of roads, dooming people to live isolated lives, separated from one another by their cars. These aren't conducive to community, and as a result many people feel alienated and lonely. While they are completely surrounded by buildings and cars, they don't have access to nature or a feeling of connection with each other. Lately I've been inspired by circles and spirals and flowers. So I created this dream community in the shape of a flower. The roads are on the outside of the community, with plenty of parking. There is parking on the curbs of the roads and parking lots in the edges between the petals and the center circle. Houses each have their own parking area in the back along with private back and side yards. The front door of each house opens onto front porches. The "front yard" is a wide open space of parks and fields. Pedestrian pathways lead to the center circle. The center circle is where all of the more "urban" stuff is located like a gym, health center, bed and breakfast, library, museum, market, shops, schools, theater, restaurants, bars and cafes. The more urban types of housing - apartments and tiny house villages - are located close to the circle and the accompanying larger parking areas. In between each "block", or in this case petal, are swaths of nature or horse pastures. There are trails leading through these swaths for people to walk, bike and ride horses. At the outer edge of each petal are buildings related to the theme of the petal. In the farm or agriculture petals the edges hold barns and mills. In the parks and recreation petals, the edges hold multi-use infant and senior daycare centers that also are utilized for music, arts, science and technology play spaces, spiritual centers or sports centers. Obviously some homes are more "country living" and others are more "family" or "recreational", but all would have easy pedestrian access to both nature and community. There would never be any reason to have to walk next to a car as all of the roads are completely separated from the pedestrian areas, and there are bridges over the pedestrian areas leading from the petal to the center circle. Of course there should also be a cooperative element to this community. Each person would contribute something like 4 hours a week of service in exchange for room and board. Every hour worked beyond 4 hours a week would be paid $25, regardless of the occupation. This would allow people to spend more time doing things they enjoy and free them from having to do so many things they don't like to do. For instance, I would happily work a few extra hours at something I enjoy like writing or teaching if it meant that I could pay someone else to do some of the things I don't enjoy, like cleaning the house and doing the laundry. And with our basic survival needs easily met, there would be much more time for enjoying life's finer things like good food, good company, music, art, and education. (At least, these are the things I would enjoy more of, for others it might be something totally different, like more time to play sports or spend tinkering on projects.) What would you do with the extra time? I've spent a lot of time dreaming about this imaginary community. How safe I would feel. How much more connected. I sometimes feel ashamed of these dreams that I have, and have kept these thoughts mostly to myself for a long time. But I think that I'm not alone in feeling that our communities are not serving us. I think everyone craves more time in nature at the same time that they crave more of a social connection. If our neighborhoods were built differently it would be possible to have both.
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When the phone rang at the predetermined time and I saw it was a San Francisco area code, I panicked a little bit. I had no idea what to expect of my interview with filmmaker Mabel Valdiviezo on Prodigal Daughter, her in-progress film about her healing journey of reconciliation with her Peruvian family after sixteen years of silence as an undocumented immigrant in California. I swallowed my nervousness, took a deep breath and answered as I opened up my laptop to take notes. A few days before this call I had received an email from Prodigal Daughter's PR manager asking if I would like to interview Mabel for my blog. I am always surprised to find that anyone even reads my blog, so I was pretty flattered at the opportunity to connect with an award-winning filmmaker with such illustrious words as "Sundance" and "Cannes" scattered about in her bio.
Taymar: I enjoyed watching your trailer and reading about this project. What inspired you to make this film? Mabel: I started the film when I got my visa. I wasn’t really ready to share my story. At some point I came to terms with it. As I started working on the film I realized that there were two things happening. One was very unconscious, a very deep need to find a healing tool for my journey, having gone through everything I went through. As a tool for dialogue, as a tool for help. What really inspires me is that when people watch they respond [to the fact] that my story is such an intimate story...[when they saw the trailer at a screening] it struck...a very emotional chord with other women there. **** Taymar: What do you want to accomplish with this film? Mabel: I hope that it will evolve into a movement and help others. Taymar: In the trailer you reveal that you have cancer. How did this impact the film? Mabel: Cancer showed up in the middle of production. It was hugely surprising. I thought I was pregnant because I had a huge belly, and my doctor said you’re not pregnant, and sent me to oncology. That was the beginning of my connection with my family, so I had to figure out how to heal the broken bonds with my family. And my connection with my family became stronger because of the clock ticking. Taymar: How are you doing now? Mabel: I’m feeling good health wise, I haven’t had too many big interventions for the past while. I’ve had two chemos, in 2012 and 2013, and I vowed that I would try to find other, holistic approaches because the chemo is so difficult. So i’m just living a healthy life in the best way that I can, so it will stay like this. Taymar: Is the cancer gone? Mabel: I can’t really say at the moment, but I don’t see it stopping me from doing what I’m doing. I just have to be careful about my choices health wise. Taymar: Is this a movie about cancer? Mabel: It’s about the intersecting themes of the immigration narrative with healing from trauma and reconciling with family. The cancer was just the tip of the iceberg. Throughout my life I dealt with difficult issues...Having to hide in the shadows, trying to survive, especially as a woman, it kind of marks you. And it’s very hard to come out of...the trauma for having to leave your country in the middle of crisis, and then of surviving. Not having the access, the family, the community…that most people take for granted. And it has an impact on your mental health. Some people react to cancer in different ways, I reacted after the shock, "Why is this happening to me?", and went into a more mindfulness mode. This may be an effect of my need to heal these things. So I went into an internal journey. I rediscovered my need for going back. I use journaling, it helps me a lot. There is very great potential with communities that like the idea that I could show the film and have meaningful discussion after the film about mental health and healing. Maybe do a healing art journal workshop after the film. So the film will be an opening door to find a safe place to heal. Taymar: Who is this film for? Mabel: I think this film will help immigrant women and women who have survived trauma. I think most immigrant women have survived trauma. It’s very typical for immigrant women to have gone through trauma. Women who are not immigrants are still going to relate to the aspects of the difficulties as a woman of finding empowerment. Taymar: What are the themes you think they will relate to? Mabel: Not having seen family for a very long time. That’s like my story. I went through that. I left my country in a time of great political turmoil. I came here with aspirations to become an artist, specifically a filmmaker. To become a filmmaker I went through a whole journey, I had no plan. I found myself in position where I couldn’t find work. I had to go work under the table in any way that I could in order to survive as a woman. I found myself very disempowered, it led me to be in a place where I lost faith in myself. I lost my confidence. Feeling like you don’t exist, you don’t have a voice, and nobody’s going to hear you because you don’t have a voice, a lot of women go through this. In the culture that we live in, it’s not perfect, there’s still a lot of inequality for women. I didn’t even know who I was for awhile. I had a really strong identity before I came, but I lost it. I was a Peruvian, a rebellious punk. And I came here, and I went to San Francisco thinking that of course I would fit in. But I got lost in my situation. At some point in my life I started to figure out that I needed to get out of that disempowerment situation. I had to start to trust people in my life. Eventually I got married, and made that transition. How can somebody transition or transform to this other side of life? And hopefully make something meaningful out of it? Taymar: In the trailer you hint at something bad that happened to you that kept you from coming back to your family. Mabel: Yes, it was something I never talked to anybody about. It was only going back that I was able to talk about it. It was very significant. It was very hard for me to bring it up to my brother. When I was able to move out of it, and journal the first thing that showed up was when those things happened to me. I really needed to release that. Taymar: This project is so inspiring. When is it going to be finished? Mabel: It depends on how it goes with funding and post-production. Maybe another nine months before this film is done. My goal is to have it done in time for March 16th, International Women’s Day. Taymar: Yes, that seems very appropriate. Thank you for talking to me today, I look forward to seeing your film. **** After we hung up I made a few more notes and saved the file for later. I had told Mabel that I was going to wait to publish our interview until after she went live with her fundraising campaign. Then, life happened and I got crazy busy. Finally I had a chance to sit down to post the interview. I contacted Mabel first letting her know that I was ready to publish and she was giddy with enthusiasm. She had a backer on beaconreader.com who had agreed to match funds dollar to dollar! This campaign is going on now. Please take a few minutes to read more about this project and watch the trailer on beaconreader. If you can chip in to make this project happen, please do, if they don't make their goal the project will lose all of the funding they've raised so far. This story touches my heart. America as we know it is built on so many dreams of immigrants, yet we continue to stigmatize new immigrants and provide little support for their dreams. Making art in America is not easy. Making art as an immigrant in America is even harder. I am so impressed with Mabel Valdiviezo for all that she has accomplished, and continues to accomplish. I'm looking forward to watching Prodigal Daughter on International Women's Day this year. If you had walked by Sunday afternoon and caught a glimpse of me sitting outside in the mountains with the sun pouring down on a circle of women alternately crying and laughing and clapping, you might not have been able to figure out what the thread was that bound us together. Some of us spoke another language and had to have a translator. We were of various economic, ethnic and cultural backgrounds. I am sure if you had asked about our politics or our religious beliefs that you would have found a wide range of answers. What brought us together was that we all had come to a retreat for families with children that have ID, or Intellectual Disabilities, put on by the ARC and ACL of Colorado. Some of us had children with autism. Others had children with Down syndrome, blindness, rare genetic disorders or cerebral palsy. And despite all of our differences, this one commonality of having a child with a disability was more than enough to connect us. We were sitting in a circle of women because we had been separated from the men in the group and brought outside to connect and discuss what we were bringing away from the weekend we had spent at the Families in Action Retreat at the YMCA of Estes Park. It was quite emotional as it had been an amazing weekend. When my family arrived on Friday night we were welcomed in to dinner by the sound of a band energetically playing "Stray Cat Strut" while people of all ages and abilities danced. Later several people mentioned that the sight of an older woman dancing joyfully with her 30 year old son with autism that night had given them a sense of hope that there might be joy in their own future. Saturday morning we met with childcare providers who came and took our children for the day. For some parents this was the very first time they had trusted someone other than family or hospital staff to take care of their children. Each child had been carefully matched with a volunteer who had the training and ability to care for all of the child's special needs. It was a much easier transition than we had been prepared for, and soon we were sitting in a conference room waiting for what we thought would be a series of rather dull presentations. We were delightfully surprised. The first speaker was a 96 year old woman who had raised her twin autistic boys and started an ARC chapter in the fifties. Her story of struggle and triumph was so inspiring there was not a dry eye in the house. We hardly thought it could get better than that, but every presentation was just as good as the last. Even the talks on topics like legislation and employment turned out to be riveting. The mom of an autistic son walked us through the steps she took to amend a law that would have cost her family, and thousands of families like her, needed therapies. The father of a boy with Down syndrome described how he took over the chain of ARC thrift stores and improved productivity and profits by increasing the percentage of employees with disabilities to 15% of the company. Another speaker talked about the importance of bio-diversity, and how she had talked to her own son about his autism. It was a pretty mind-opening talk. Often when we think about diversity we think of people of different ethnicities and genders, but people of different abilities are an important part of diversity too. And the reality is that we all have different abilities, and we all benefit from a culture of inclusion and acceptance. One of the speakers was a woman I know well, Anna. In addition to her role as a parent liaison of our school district, she also leads a monthly writer's workshop for special needs parents that I'm a part of. She brought in her daughter who has learning disabilities to speak, and her daughter made it very clear that she would rather be helping out with childcare. (Which I personally found very sweet since she was helping to take care of my youngest son Benny.) Anna then shared her own parenting journey of raising a child with a disability. She described the process of advocating for her daughter and how it evolved into her daughter advocating for herself. She talked about the challenge of letting her daughter struggle, knowing that by helping she would be taking away the opportunity for her daughter to grow her independence. At the end of the talk my husband said that it sounded a whole lot like our experience of parenting our older "typical" child. Anna laughed and said "You caught me! It's just plain parenting, whether your child has a disability or not." The woman we had all seen joyfully dancing with her 30 year old autistic son on the first night gave a talk on caring for the caregiver, followed by an hour-long break, with childcare. There were many fun things we could have done, but in the spirit of self-care my husband and I took a much needed nap together. That night we participated in some fun activities, my favorite of which was eating s'mores by the fire. There's something about s'mores that always makes me happy. In the morning our final talks were on navigating the school system. It gave me the opportunity to ask a question that had been on my mind for some time. "Why is inclusion important?" Ever since we've entered the world of parenting a child with a disability I've heard a lot about inclusion, but I haven't entirely understood why it's such a big deal. I could tell my question evoked a lot of passion as several people asked if they could contribute to answering my question. The first person who spoke talked about the difference between mainstreaming and inclusion. Mainstreaming is just putting a child in a classroom whether they can follow along or not. Inclusion is modifying the instruction so that the child can follow along. Inclusion has been documented to benefit everyone involved. Not only do the people with disabilities benefit from inclusion, but everyone in the classroom does as well. This is also true of inclusion in the workplace. The benefits are not just the measurable ones like higher test scores and increased productivity, but the intangible ones as well, like morale. When people with disabilities are included, it creates a culture of tolerance. And people feel happier. And the more children who grow up alongside people with disabilities, the more they will be comfortable with differences. And these children are our future legislatures, our future doctors and lawyers. It was during this conversation about inclusion that it hit me that I have a great responsibility. Not only do I need to advocate for my son as he grows up, but I need to be an advocate for all people with disabilities. It's a civil rights movement that is continuing to be fought, and still has a long ways to go. This sentiment was echoed by many in the women's circle later that day as we sat in the sun and shared our thoughts. We spoke different words, but the messages were the same. "Now I know that I am not alone. Now I have hope. Now I understand how important it is to teach others about diversity. Now I am ready to fight for my children. Now I am ready to fight for all children." People are often amazed by how well my nine-month-old son Benny is doing despite the fact that he has Down syndrome and had open-heart surgery only five months ago. I often let them think that it’s because we’re such great parents, but the truth is we have a secret weapon. We have an amazing occupational therapist, Sara Ostrom. Sara first met Benny when he was only 2 weeks old. Because of his hypotonia, a common problem for babies with Down syndrome, he was super floppy, like a rag doll. Most infants naturally pull their limbs into their bodies, but Benny’s limbs hung loose. When lying flat on his back he couldn’t even keep his head centered, it would just loll over to one side. We didn’t notice it much at the time because he was a newborn, and all newborns are sort of floppy, but looking back I can see that without intervention it would have taken him a long time to achieve his milestones. Sara came over to our house as part of our initial assessment for Early Intervention. Because of his Down syndrome we knew we would want to start as soon as possible, so we had called our local provider from the hospital the day after Benny was born. Sara arrived with the assessment team and was delighted that Benny was awake. She picked him up, gave him a big smile and talked to him in a high voice, which she explained we should do to help him develop social skills and language. She also brought his arms and legs in close to his body, to help with his muscle tone, and supported his head in a midline position. Before the assessment I hadn't known what to expect, or if there was anything that we could do for a baby this young. I had imagined that it would be some sort of baby test that Benny would get graded on. Instead it just felt like a little group of nice people holding and enjoying our baby. It was decided that Benny would benefit the most from weekly visits with an occupational therapist like Sara. I didn’t know what that meant exactly so she explained that an occupational therapist helps with whatever the person’s occupation is. In this case, Benny’s occupation is being a baby, so she would help us with everything involved with babyhood – eating, sleeping and moving. The weekly sessions with Sara started a few weeks later. She came to our house for an hour and showed us how to help our floppy baby grow big and strong. Some days she just helped us come up with solutions to help with weight gain or sleep, but most of the time we spent a busy hour working on early communication skills and building the strength and coordination he needed to start rolling over, playing with toys and eventually sit up, crawl and eat solid foods. I always knew that we were lucky to have Sara, and I got a really good reminder recently when I attended a workshop on NeuroMovement for special needs kids. We hadn't discussed it so I was surprised when I felt a tap on my shoulder and it was Sara, there to attend the workshop too. Seeing her there made me realize how much she goes above and beyond. She’s been a therapist for many years and could easily rest on her laurels. But instead she is constantly attending conferences and workshops and reading up on the latest techniques to help kids like Benny. Thanks to Sara's weekly guidance Benny is now an active, happy baby achieving all the same milestones as his typical peers. She is our real life superhero, we couldn't have gotten this far without her. I'm so excited! This morning I got to visit a goat farm coop. There are mommy goats and their kids, and if I join the coop I get to help take care of them and milk them, and keep the milk! Since we can't eat cow dairy, we eat a lot of goat dairy. I'm so excited to have fresh milk, and to make my own cheeses and yogurts with it. The goats like being milked, they come running in and hop up to snack on grains while they're being milked. Their kids are still nursing, so the milk is shared with them and they all seem so happy and healthy. What a wonderful situation. I'm so excited to have discovered this opportunity. I wish we all could spend a little time getting to know our food sources like this. I think there would be a lot less cruelty to animals and a lot healthier food if we had more farm coops. It is hard work though, so not for everybody. I brought Benny with me, and I'm looking forward to having my kids grow up understanding a little more about where food comes from. In fact, I think it might be time to start my veggie garden too. Life is good. It seems like every few months there's another case of police brutality that leads to the death of a young African American man. The case at the moment is that of Freddie Gray, a young man in Baltimore who died from spinal injuries after being arrested. There are many questions about this incident that still have not been answered, including why he was arrested in the first place. It appears that when he saw the police he began to run. That they then chased after him, caught, restrained and arrested him. But so far there has been no charge brought to light, other than the crime of running from the police. It is not hard to guess why Freddie ran when he saw the police. He has a history of arrests for petty crime, so this was not his first encounter with the police. Given that he was arrested and restrained so violently that it killed him, it seems that his instinct to run was correct. Apparently his mistake was not that he ran, his mistake was that he did not run fast enough. It would be easy to look at this case quite literally in black and white. The police officers involved were white men, the young man involved was black. As a middle class white woman, my own experience with the police recently was quite different from his. I was visiting Santa Monica, California with a friend. We had stopped at a cafe, and soon discovered that my purse had been stolen. Inside my purse was my phone, and we were able to use the Find My iPhone app to see where my purse had gone. The police responded much more quickly than we expected, helped us track down the thieves, and my purse was returned to me with everything in it. In the end the police were my heroes, and I was very grateful to them that they were there to intervene on my behalf. This has not always been my experience with the police. When I was a young punk rocker with a shaved head and a bad attitude I was often found on the other side of the law. I was distrustful of the police, as they were of me. I know what it's like to see a cop and run, whether or not you are doing anything illegal. The difference is that a punk rocker can grow out her hair and her attitude and blend in. A black man will always be a black man. Would Freddie Gray call the police if someone stole his wallet? If he did, would they respond quickly and treat him respectfully? Unfortunately, I think that the answer to both of those questions is no. This situation once again brings up our long history of institutionalized racism, civil rights violations and tensions between poor inner city communities and law enforcement. Continuing to see the situation only in black and white, with fingers pointing at both sides does nothing to change it. What we need is understanding on both sides. Years ago I attended a nonviolent communication training workshop conducted by the late Marshall Rosenberg, a great man who spent his life helping resolve conflicts peacefully in situations of extreme tension. That workshop taught me a lot of things about resolving conflicts, most importantly that all anger comes from an unmet need. If we can determine what our need is and communicate it, the anger defuses and we are able to come to an effective resolution. The people of Baltimore are angry. The people of America are angry. We are angry because this is not just an isolated incident. People living in poor communities of color are treated as criminals before they have ever committed a crime. The unmet need causing the anger here is the fundamental need for safety on both sides of the issue. Every community in America needs to feel that police are there as protectors. And the police need to feel like they are safe as well, or they will continue to overreact and escalate situations that might otherwise have been harmless. For some time activists have been calling for more policing of the police. While transparency and accountability are important, I think relationships and communication are equally important. If the police had a better relationship with the communities they patrol, there would be less fear on all sides. Currently, most people only encounter police when they are either a victim or a perpetrator of a crime. Either way, it's generally a bad situation when people are not at their best. These encounters leave lasting impressions on everyone involved. After awhile the assumptions become that everyone is a criminal or that all police are a threat. And it's these impressions that lead to a situation where a young black man sees police and automatically starts to run, and the police see him running and automatically start to chase him. To change the situation, the encounters need to change. Police need to be integrated into the communities they patrol. They need to spend time at the schools and hospitals and nursing homes in that community. They need to be a part of the fabric of the neighborhood. Not so that they can intimidate the people there, but to get to know them. Imagine if Freddie Gray had grown up with police who were kind and generous. What would it have been like if police had been a part of his regular life all along, helping out on the playground at recess, helping him find his lost dog or assisting an elderly person across the street safely? Maybe, if he had grown up with positive associations of police, he might have reacted differently when he saw the police coming. What if he caught their eye and waved and smiled. What if he said hello instead of running? Maybe things would have gone differently. Maybe he would still be alive today. March 21st is coming up which is a big day in the world of Down syndrome. The numbers 3-21 take on a different meaning when you have a child with Down syndrome, also known as Trisomy 21. Today the site "A Day in the Life of Down syndrome" is looking for day in the life stories. I know how important this is because when we got our prenatal diagnosis it was other parents stories that helped me to have the courage and faith to continue with the pregnancy. This was especially helpful for me because the way that our diagnosis was delivered was incredibly negative. Having access to another perspective was key to our making the best decision for our family. To get an idea of how our diagnosis was delivered, I would like you to imagine for a moment that you are pregnant and you've come in for an ultrasound. The ultrasound tech can't tell you anything, so you wait for the obstetrician. She comes in with a serious look on her face. "I'm sorry to tell you, but it is highly likely that you're having a boy. We could do an amniocentesis to find out for sure, but given the results of your blood test and this ultrasound, I'm 99.9% sure that you're having a boy." She goes on to say, "Boys have a higher risk of cognitive and behavioral problems like autism and ADHD, as well as a higher incidence of serious health problems like cancer and diseases of the heart, lungs and nervous system. They also have a lower life expectancy. I can't tell you how severe your baby will suffer from being a boy, but these are the statistics." She goes on to tell you that in the state of Colorado you have two weeks to legally terminate the pregnancy. Now these statistics are true, boys do have a higher rate of cognitive, behavioral and health problems than girls, and women tend to live much longer than men, but if this was the way parents were informed about their child's simple chromosomal difference, there would be a lot fewer boys in the world. Replace the word "boy" with the word "baby with Down syndrome", and you have a pretty good idea of how we were informed of our diagnosis. It is no wonder that so many parents who receive a prenatal diagnosis of Down syndrome choose to terminate. The rates are between 60-90% depending on country and reporting agency. This is heartbreaking when you consider that the differences between people who have Down syndrome and those that don't are no greater than the differences between girls and boys. A few weeks ago a post circulated of one such story, a woman who ended her much wanted pregnancy after receiving a diagnosis of Down syndrome. Reading her story made me so grateful to all of the parents who shared their stories of the absolute joy and delight they experience every day raising their children with Down syndrome. It was reading these stories that meant the difference between her story and my own. So this is why I've decided to participate in the Day in the Life of a person with Down syndrome. You can find my Day in the Life post here, along with many others, or just continue reading it here: My story is very similar to that of most parents of young babies, a combination of exhaustion and joy. Nearly every day Benny wakes up with an enormous smile. His smile lights his entire face up, and fills the room with joy. This morning was not one of those days. Benny is seven months old, and this morning he had a wet diaper and a stuffy nose. My husband took him into the living room so I could sleep in for a few more hours. (And yes, I do know how lucky I am) After my husband left for work and returned Benny to me I nursed and cuddled with him until the handyman arrived and rang the doorbell. My older son, home with strep throat, jumped into the room with a baseball bat to defend our home from the intruder. After talking him into putting the bat aside, I answered the door and set Benny down on his play-mat in the living room so that I could talk to the handyman. When I returned he had rolled over onto his stomach and was happily scooting around on his belly like a lizard. He is always quite proud of himself when he manages to get anywhere like this. Getting to this point has taken some hard work, and we are pretty proud of him too. I picked him up and sat down with a few books. The first book had little flaps hiding various body parts like toes under boots. Benny is still getting the hang of using his hands, but he was able to open and shut a few flaps, possibly even on purpose. Next we read a book about bears. We are teaching Benny to sign, so I practiced all the signs I know as I read the book to him. Later on I sat him in his high chair and fed him some smooshed up peas and avocado. It was his first time tasting peas and he was a fan. Eventually he had a nap while I played with my older son who had way too much energy for a sick 11 year old. Juggling both boys was tiring, and by the end of the day I was grateful to have the chance to sit down and write this post. It's true that Benny is different than his brother was as a baby. Some of that is due to his Down syndrome, but the majority of the differences I notice are because Benny has a much sunnier disposition. Despite Down syndrome and undergoing heart surgery at four months, Benny is pretty close to on par with his typical peers. This is largely in part to Early Intervention services that we've been receiving since he was three weeks old. Every week his Occupational Therapist, Sara, comes and works with him. He adores her, and works hard to impress her. While she is working with him she is also teaching us what to work on in the week between her visits. When he was a newborn she showed us how to hold his limbs close to his body, and help his head rest in a midline position. This helped combat his hypotonia, also known as low muscle tone. Each week built on another skill that we had practiced the last week, until it all fit together and suddenly he was rolling over, sitting up, reaching for toys...doing all the hard work of babyhood just like other babies his age. Soon we will be meeting with a speech therapist. I am looking forward to it. Even though he is still in the babbling stage, after seeing the power of working with an Occupational Therapist very early on, I am eager to get as much help with speech as possible. In addition to these services, I am constantly monitoring the internet for new ways to help Benny. There is so much new research happening, it's really exciting. Already the life expectancy of people with Down syndrome has gone from 11 years to 60, and every day I hear stories of the amazing things adults with Down syndrome are accomplishing now. With modern medicine and our improved understanding of the condition, this is only going to get better. I've found a great deal of research that indicates specific vitamins and supplements help with trouble areas common to Down syndrome. I started taking some of these prenatally and continue to take them now while I'm still breastfeeding. In addition we are also working with a naturopathic doctor who specializes in Down syndrome. She looked at Benny's thyroid levels and prescribed appropriate medication to help remediate some issues that had come up. I believe that staying on top of this has helped Benny greatly. And it's not much more than I did with my older son. I enjoy researching and have always wanted to do everything I can as a parent. The biggest difference with Benny is not the therapy or the supplements, it's that I have more support. And not just support from Early Intervention - the Down syndrome community is amazing. I have yet to meet a parent of a child with Down syndrome that is not an inherently good person. And in talking to other parents it seems that it is almost always the child with Down syndrome that is the easier child. Yesterday a friend of mine stopped by with her two little sons who had fallen asleep in the car. The weather was beautiful so we drug out two lawn chairs and sat next to her car in my front yard. Benny played with toys on a blanket in the grass and we chatted about various things. Eventually the conversation turned to how funny it is that Down syndrome has turned out to be no big deal. I am still early on in my journey, but I can tell you that so far I am very, very happy. My husband and I often spend ridiculous amounts of time just enjoying how wonderful our baby is. He delights us with his loving energy that radiates out of him. It is almost impossible to be in a bad mood with Benny in the room. I know from experience that not all babies are like this. My older son was a lovely baby, but he was not the positive ray of sunshine that Benny is. I know that we will continue to have our challenges, just like all parents do. I am sure there may be times that I curse that extra chromosome, but I will never regret my boy that has it. He is the sunlight that illuminates our days, and I cannot imagine life without him. I love most holidays, but Valentine's Day has never been one of them. When I was single, it always seemed a sad reminder of my inadequacy at finding a partner. When I had a partner, they were never romantic enough to satisfy the commercial cravings for diamonds, chocolates, flowers and fancy dinners that the media has been drumming up ever since the big Christmas holiday sales ended. For many years though, V-days have felt different for me. I haven't worried so much about what happens on this day, because it is the culmination of all of the days of the year that leave me feeling loved. Today, for instance, my husband did some laundry and paid bills, and that feels plenty romantic to me. He claims to have big plans for later, but honestly, I am satisfied with the love and sacrifices he makes every day. My son tells me that he is glad that he's a child and isn't expected to get anyone anything for Valentine's Day. I tell him that he is never obligated to get anyone anything on Valentine's Day. He replies that if he had a wife she would be furious if he didn't. I wonder where he gets this idea. When I was his age I once spent an afternoon in a park with a handful of friends. Someone had a boom box, and we played "The Greatest Love of All" by Whitney Houston over and over again while we lip-synced and danced around. It took me many years and many failed relationships to truly understand the meaning of that song. It wasn't until I reached the same conclusion as Whitney, that "learning to love yourself is the greatest love of all", that Valentine's Day changed for me. I was no longer willing to stay in a relationship for fear of being alone, and being alone no longer seemed like such a terrible thing. I stopped waiting to be rescued, and instead I rescued myself. Learning to love myself wasn't easy. Growing up I was mercilessly teased for being a skinny white girl on an Indian reservation. I internalized so much of this as a reflection on my self-worth. I desperately wanted someone to love me despite myself, and was continually disappointed that all of my relationships came up short. It wasn't until I found myself in a terribly abusive relationship in my mid-twenties that I was forced to realize that what I was doing wasn't working. I became determined that I would find my way out of this unhealthy cycle. There is one line in that old eighties song that isn't quite right. Learning to love yourself is not "easy to achieve". After many years of therapy, self-help books, mediation and self-reflection my journey led me to a place where I finally had learned to love myself. And that is when I met the man who I would be in my first truly healthy relationship with. We were married by a lake in California three years ago in June. My friends often tell me that I am so lucky to have found Max. I agree with them, but I also know that it was not just luck, it was hard work. Our relationship works because I love myself enough to know that I could walk away at any time. I stay because I don't have to. And that's a good feeling. Wherever you are this Valentines Day, whether you are single, in a co-dependent, unhealthy relationship, or even if you are happily involved with the love of your life, I invite you to listen to this cheesy old eighties song and remember, learning to love yourself, it is the greatest love of all... Having a baby who needs oxygen really sucks for many reasons. First of all, the baby hates it because it's so uncomfortable with a hard thing in their nose and tape all over their face and a tube tugging all the time. But much worse is the fact that your adorable baby now has something covering their cute little face...something that makes them look like they're sick. So instead of people saying "What a cute baby" they ask "What's wrong with your baby?" and that just sucks. When Benny first got prescribed oxygen I really freaked out. At first I just despaired that there was no way we could do this. Then I pulled myself out of it and tried every different method of keeping the cannula on his face that I could find - paper tape, tender grips, cannulas that claimed they were softer on a babies face...none of them worked very well. Benny hated it, I hated it, our whole family hated it. Finally I reached out to everyone I knew who had ever had a baby on oxygen. Since we live more than a mile above sea level, that’s actually a lot more people than you might think. I got a lot of advice. One mom shared that to keep from tripping over the long oxygen tubes running from the concentrator in an upstairs bedroom to her living room she used cable concealers and multiple tubes. We were very excited about this idea, and my husband immediately ran out to a home improvement store and bought a kit. Another method someone showed me for dealing with the great oxygen tube tangle problem is to use a pacifier clip to hold the oxygen tube at a loop at your belt buckle like this: Soon after these great discoveries, a very experienced Oxygen Mom came over and showed me all of her tricks. She showed me how to cut up pieces of Tegaderm Film and apply it at the temples and behind the ears to keep the nasal cannula in place. This was much easier on his skin than the "Tender Grips" bandages, which ripped his skin off when removed, making him scream in pain and leaving bright red painful circles on his sensitive newborn skin. She also showed me how to snake the tubing down his outfit so that it wouldn’t get caught and accidentally strangle him. She told me that I could request small tanks and a backpack from the oxygen supply company, which allowed us to be much more mobile. (Surprisingly the oxygen supply company hadn’t bothered to tell us or supply us with one until we requested it. They had only given us giant tanks to lug around) With the little tanks we felt liberated. We were even able to use slings and front carriers and go for walks. An emergency hospital stay led to some further insights on how to make Benny's oxygen use more comfortable. While we were there a nurse told us about a nasal gel we could put on his nose to keep it from getting too dried out. We also discovered that having a humidifier on his oxygen line really helped with his comfort. We asked if we could take home the bottle they had used in the hospital to add to his line at home. Unfortunately, Benny was nearly drowned when my husband accidentally tipped the water over into his oxygen line. After that we decided to take it off until we could get a proper system. During the drowning incident we also decided to come up with a better system for keeping his nasal cannula on. My sister Josephine was visiting, and helped me to modify some of his knit hats so that we could tie the tubes up over his ears and then cinch it under his chin. This had the effect of keeping the nasal cannula in place and the hat on at the same time. It was also easy to remove, so that if there were ever another incident where we needed to remove the cannula quickly we could. The first hat that I modified I simply cut a couple of holes on either side of the hat and used pipe cleaners to hold the tubes in place. It worked really well and also looked really cute, but I was afraid that the pipe cleaners might accidentally poke his head if I used them at night. I happen to live by a yarn shop, and Josephine stopped by to see if she could find a good material to use. The shop owner helped her select a yarn that was not too stretchy, so that it would stay in place well, and a yarn needle. Sewing the yarn onto the hats is really simple and only takes about a minute to do once you have a yarn needle and yarn. We shot a little video to show how, but the files corrupted somehow, so I’ll have to reshoot it and post it later. In the meantime, here are some pictures with directions on how to create your own cannula holding hat: Soon after we created the modified hat system, Benny had to take another emergency trip to the hospital. Everyone commented on how cute and functional his hat was! We also made another discovery. He happened to be wearing a pair of snap down footy pajamas the day he needed to go the hospital. We discovered that in the snappy pjs, he was able to remain clothed despite having tons of wires and tubes running all over him for monitoring. This discovery came in handy later when he had heart surgery. We stocked up on snap and button down pajamas beforehand, as well as leg warmers. It's silly little things like this that can make a hospital stay so much more comfortable. Knit hats get loose after a day or two of wear, so if you try the hat system I recommend either making many knit hats and washing them often, or using a sun hat. If you are not the DIY type, there is a company that sells hats, o2kidslids.com. We bought a hat from there as well, and it worked great other than that I hadn’t ordered the right size, so it was a bit big on Benny. With all of these tricks, I quickly became a pro at keeping Benny oxygenated in style and comfort. Still, it was a big relief when he finally started keeping his levels up on his own. How easy life seemed without all of the tubes and tanks and machines that came with the oxygen. Recently we got a call that Benny’s sleep study had shown his oxygen saturations levels dropping below 90 over half of the time. Our doctor recommended putting him back on oxygen full time for a month. I was devastated. We had all enjoyed the freedom without oxygen and the idea of having to do it all again seemed like torture. Today is the first day I’m going to leave my house with Benny since having to put him back on oxygen. I am bracing myself for it as I had really been enjoying just having a baby. A cute, healthy-looking baby. A baby whose health condition I didn’t have to explain if I didn’t feel like it. A baby who came just with a diaper bag and a car seat, not all of the normal baby stuff plus a backpack, tanks, tubes and all the various oxygen tank accessories. This was one of the hardest blog posts I’ve written because I really wanted to be cheerful and upbeat about having a baby on oxygen, but I don’t feel that way. Having any kind of baby is hard. Having a sick baby just sucks. It doesn’t mean I love Benny any less because he has health problems, it just means that sometimes I have days where I just don’t want to go outside. I don’t want to explain to the kind, curious strangers that no, my baby wasn’t a preemie, that he has Down syndrome and is recovering from a heart defect and that’s why he’s on oxygen. But he does and they will, and maybe my going outside with my baby and his oxygen tank will help somebody else feel like it’s okay too. Maybe my writing this post will help other parents who are going through this to know that they’re not alone, and that it is doable even if it does suck. I hope so. Please let me know if you have any suggestions for parents who have a baby on oxygen that I didn't include here, and if you know parents who could use this information do share this with them. Thank you! Dinner came out so well tonight I had to share. People often tell me they could never go without wheat and dairy, but it's easy when you eat meals like this one; juicy herb roasted chicken over crispy potatoes, stuffed mushrooms wrapped with bacon and a warm green bean salad with garlic and grape tomatoes. I've been doing this for a long time though, so I've had plenty of years to master the art of feeding my family gluten and dairy free meals. I enjoy cooking, but I'm comfortable eating out at pretty much any restaurant too. It's easy once you get the hang of it. My oldest son was very colicky when he was a newborn. While reading Ann Lammott's "Operating Instructions" about her experience of dealing with colic, I decided to try the solution that worked for her in the book - cutting out wheat and dairy. Eleven years later our newest member of the family, Benny, appears to also have trouble with wheat and dairy, so I've become even more vigilant about keeping it out of my diet while I'm breastfeeding him. It's not a big deal though, I love how much healthier my family eats as a result. After we ate dinner I threw the remaining chicken carcass in the crockpot, covered with salted water. I'll add a tablespoon of apple cider vinegar and some cracked pepper and call it good. Tomorrow I'll strain out the liquid and use the bone broth in almost every dish I make for the rest of the week. I learned about bone broth when I was trying the GAPS diet to try to cure my IBS a few years back. Bone broth is really good for you. It helps keep your gut lining healthy and provides important nutrients for brain function. And it tastes good. Incidentally, it is naturally gluten and dairy free. One of my favorite dishes to make with bone broth is chili. My entire family loves it, and it's so delicious and warming on a cold winter day. I make my chili different every time depending on what meat and beans I have on hand, but here's a basic kind of recipe for my chili:
Some bone broth, filling about the lower third of the pot Ground beef or other meat browned first in the frying pan with some onions White beans, pinto beans and kidney beans canned or, if I'm feeling really ambitious from scratch Diced tomatoes, garlic and spices. (Chili powder, cayenne pepper, salt, pepper and whatever else feels right to taste) My family can handle goat dairy, so I might top with shredded goat cheddar or a spoonful of plain goat yogurt, but a lot of the time we just eat it plain. What's nice about chili is that you can add ingredients at your leisure and the longer it cooks the better it tastes. Another quick bone broth recipe is chicken soup. This is just chicken bone broth with rice, cut up leftover chicken meat, carrots, onions, garlic, salt and pepper. Simple, delicious and very healing for any kind of cold or flu. There are really lots of yummy foods that are easy to make and good for you that do not have wheat or dairy in them. The past few weeks we've used the meal planning site plantoeat.com to plan and shop for our meals. It's really nice because you can easily add recipes from any website to your planner and it outputs a convenient shopping list for you. I've found a lot of great recipes on paleo cooking sites and through the GAPS Diet and Nourishing Traditions cookbooks. These are great resources if you're looking for ideas. Even if you don't have time to cook or you're traveling you can still eat gluten and dairy free. Just remember that all meats, vegetables and fruits are fine, as well as carbs like corn, potatoes and rice. Someone posted recently that they felt they couldn't eat out because their child was on a gluten and casein free diet. Here are some examples of what you can order when eating out: Go to a Mexican restaurant and order tacos on corn tortillas. Real Mexican restaurants usually don't put cheese on their tacos anyway, but always request no cheese or sour cream and remind them not to put any on the refried beans either. At American restaurants order steak or grilled chicken or fish with french fries or a baked potato and a salad or sautéed veggies. Avoid ranch dressing. Italian or thousand island are fine. You need to be careful at Chinese restaurants to avoid breaded meat or anything cooked with soy sauce because most soy sauces have wheat in them. Simple dishes like beef broccoli or cashew chicken with rice should be fine, just ask the server to make sure it's not cooked in soy sauce. There is very rarely any dairy in Chinese food. Thai, Vietnamese, Korean and Japanese foods have almost no wheat or dairy in them. At the pho place near my house I even order the Vietnamese egg rolls because they are wrapped in rice paper, not wheat. The more authentic the better, just remember not to dip your sushi in the soy sauce and avoid the tempura dishes and you should be fine. Indian restaurants have lots of dishes to choose from. Masalas and that creamy spinach dish have dairy, but many other dishes do not. There is even a gluten free crisp made of lentils that many Indian restaurants have, so as long as you don't order the Naan you are good to go in the gluten department. French and Italian food can be a little heavy on both wheat and dairy, so are probably better to just avoid. Spanish tapas on the other hand can be quite fun, with plenty of little dishes that are safe to try. Ethiopian might be a hard one since the bread is such an integral part of the meal, but Moroccan food and other African restaurants should have plenty to choose from. Brazilian restaurants are really easy to eat at, since it's largely just hunks of various meats and a salad bar. This can be a real treat for a kid who can't eat wheat and dairy. Once you get the hang of it you will find that it's not such a big deal to go without wheat and dairy. The hard one is pizza, which is a basic staple of every fricking kid party, along with cake and ice cream. Luckily there are lots of places that sell gluten free pizza. If they don't have dairy free cheese it's not terrible with no cheese. Whenever my son is invited to a birthday party I let them know his food restrictions and ask if I can send him with his own food. Nobody has ever minded me sending him with a small pizza and cupcake of his own and that way he doesn't get left out or tempted to cheat. Someday I'll put up some of my weekly meal plans for more awesome ways to eat gluten and dairy free. I hope this post is helpful to you! |
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April 2022
AuthorSince becoming a mom to a little boy with Trisomy 21 I have written a lot about Down syndrome and disabilities. I am a storyteller, wife and mom to a teen and a toddler. Life is busy! Categories
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