 The most magical thing happened the other night when we happened to arrive a little early for a Disney movie. As we sat there a Disneyland commercial played, and right in the middle of it were shots of my son Benny dressed up like Woody from Toy Story, dancing with a real live Jessie doll! What a beautiful moment!! For a kid with a disability to see himself represented on the big screen like this is just so unbelievably awesome!  Benny at a Changing the Face of Beauty headshot clinic in 2018 When Benny was first booked for the commercial we were very excited, but we were told not to post about it until after the commercial was released. I can't tell you how hard it's been sitting on my hands waiting to tell the world this exciting news! For those of you who are wondering how a kid like Benny, who has Down syndrome and Autism and whose primary communication is through an AAC device, gets booked to act in a commercial for Disneyland, the story goes back to when Benny was a toddler. Several people in my Down syndrome community were talking about an amazing organization called Changing the Face of Beauty whose mission is to increase representation of the disability community throughout the world. I know how important this mission is. When I first found out prenatally that my baby was going to have Down syndrome one of my main points of reference came from a commercial I had watched a long time before of happy people with Down syndrome playing ball at the park. I was only a teenager at the time but I remember being surprised that tears of joy started streaming down my face as I watched the commercial. All these years later that feeling was still with me, and despite a lot of pressure to terminate my pregnancy, that feeling that people with Down syndrome were happy and inspired joy had remained with me all of these years, and I stayed strong and decided to keep my baby. Representation matters.  And Benny has always loved being in front of the camera, and the camera loves him. I knew that my son was destined to be a part of this revolution, and so I took every opportunity that came our way. When he was about eighteen months old he had already had several local modeling gigs in Boulder, Colorado when he was chosen to model for the Cat and Jack brand for Target. That was an exciting gig, but because he didn't have an agent we didn't have any communication afterwards about what happened to the shots. To this day I have no idea if any of the pictures ever got used. It was then that I decided that I needed to look for an agent for Benny. After another parent of a child with Down syndrome who had gotten booked in a commercial posted that they used an agent from KMR diversity, I reached out and signed Benny up to work with them.  Benny on set in his Woody costume! The day he got the casting call to audition for Disneyland I was in the hospital with my father who was deathly ill from Legionnaires' Disease. I almost turned it down with everything that was going on, but the opportunity was just too great to pass up. When we had visited Disneyland the year prior I had been ecstatic with the accommodations they provided to make the visit comfortable for Benny. I remember wishing that everywhere on earth was as accommodating as Disneyland! For Benny to have the chance to represent children with disabilities enjoying the most magical place on earth was just too amazing to pass up. When Benny was chosen to act in the commercial we could not believe our luck. Not only was he going to get to be in a Disneyland commercial, but the filming was actually taking place in the park itself!  Benny with his on-set teacher. Since the shoot was on a school day Benny had his very own teacher on set. It also happened to be "Wear your school shirt" day at Rio Vista Elementary that day. We put his Rio Vista Elementary School shirt on over his costume and had him pose with the camera and crew so that he could participate from afar. Even though he didn't get to stay at Disneyland to enjoy the park after the shoot, Benny had a wonderful time! Everyone he worked with was so nice, and he loved being the center of attention. It has been a fun journey for all of us so far. When we found out we were going to have a child with Down syndrome, we never would have imagined that at 9 years old he would already have had a professional career modeling and acting!  Benny with the camera crew watching his footage. If you have a child with a disability who loves to be on camera I highly recommend getting them into acting and modeling. We had a wonderful experience working with KMR diversity and Benny is currently represented by the amazing Renee Perkins Garcia at the Inclusion Division at Paloma Model and Talent. Her daughter Kennedy is one of the celebrities with Down syndrome who inspired us to get into the business. We still haven't been able to find the commercial online, so if you happen to see this commercial playing somewhere please let us know so we can get an idea of where it's playing. Feel free to reach out to me if you want to book Benny for a shoot, or you want to learn more about diversity in entertainment. Join the diversity revolution!
2 Comments
 Benny and his music therapist Sarah rocked their socks for World Down Syndrome Day. We were so excited that this year Benny gave his own presentation about Down syndrome to his class and after school care program for World Down Syndrome Day using his talker, also known as an Augmented Alternative Communication or AAC Device. This is no easy feat, he had to practice diligently for some time to get the pacing and order right, and he is so proud of himself! This was the first presentation he's ever given himself, and he did a great job. Leading up to World Down Syndrome Day we invited Rio Vista Elementary School to help us celebrate by learning and sharing five fun facts about Down syndrome, and wearing crazy socks on March 21st. Five fun facts about Down Syndrome!  1. People who have Down syndrome have something extra in their bodies that makes them special, an extra chromosome! What is a chromosome? It's what gives our cells the genetic information that makes us who we are, like what color our eyes are, or whether we are good at math. Most people are born with 46 chromosomes, people with Down syndrome are born with 47! This triple chromosome is located on the 21st strand, which is why we celebrate World Down Syndrome Day on the 21st day of the third month of the year. Can you think of something special you were born with that makes you different? 2. People with Down syndrome may share some similar facial characteristics but each person with Down syndrome is unique. Just like you might have the same eye color as someone else, but in other ways you are different, people with Down syndrome have similarities and differences from each other. You share the same genetic information with your family members, but you also share unique traits that make you different. Can you think of ways that you are the same as other people in your family, and ways that you are different? 3. A person has Down syndrome, but they are not Down syndrome. With any diagnosis or difference it is polite to ask the person how they like their difference to be referred to. If you don't know what a person's preference is, it is best to say the person first, and then give their diagnosis or difference. This is called person first language, and it helps remind us to see the person first before we see their difference. Our son Benny has Down syndrome, he is a kid with Down syndrome, NOT a Down syndrome kid. Think about who you are and what makes you different. Do you want people to say your name first, and then what makes you different, or is it okay for them to call you by your difference? There is no right answer, only what feels good to you. 4. Many people with Down syndrome have difficulty with speech, but that doesn't mean that they don't have a lot to say. It also doesn't mean that they don't understand what you are saying. Our son Benny has trouble with articulation and uses sign language and a "talker" to help people understand what he is saying. His talker looks like a tablet, but has software on it that he uses to speak. Waiting to hear what Benny is trying to say often takes patience, kindness and creativity, all important characteristics for success. Besides speech, we all have non-verbal ways that we communicate. What are some ways you can think of to communicate without speaking? 5. Including people with Down syndrome in the classroom benefits everyone in the class. We all have different ways of learning, and different things that we are good at. Sharing a classroom with someone who learns differently, and who takes longer to learn, benefits everyone in the classroom. Statistics show that typical students who share a classroom with a child with a disability are less likely to bully each other and are more likely to do better academically. There is even a statistic that shows that children who share a classroom with a child with a disability have higher IQ scores! How do you learn differently from other people? What is a subject that is easy for you, and what is one that is more difficult? Happy World Down Syndrome Day! Curriculum using rhythm to teach academic and life skills to young learners and learners of all ages with Intellectual and Developmental Disabilities. Presenter: Eddie Tuduri Two day Workshop $20 Suggested Donation for Both Days Day One: May 6th, 4 to 7 PM Day Two: May 7th, 10:30 AM to 2 PM Location: First Christian Church 740 East Speedway Blvd. Tucson, AZ 85719 (corner of Speedway & Euclid) To Register: Step 1: Email [email protected] or call 619-990-5773 requesting registration Step 2: Donate $20 or more HERE (Please indicate for TRAP in Tucson) For more information visit traplearning.org  In just one week from today Eddie Tuduri will be coming to Tucson to teach a workshop on his amazing program TRAP. I am so excited to have helped make this happen, this is going to be a blast!  I remember the exact moment I met Eddie Tuduri in person. For almost a year our son Benny had been unsuccessfully attending Kindergarten via zoom. I was pretty sure Benny hadn't learned anything from these fruitless zoom classes. He refused to participate in all but the very interactive adaptive PE sessions, and his behaviors had gotten so bad that I could barely get him to put on pants. We found out about TRAP from a neighbor in Santa Barbara who also had a child with special needs and understood how much we were struggling. Since we were local, Eddie offered to come and work with Benny in person to show us how the program worked. The second he walked in the room with all of his magical rock and roll energy Benny just lit up.  The first lesson in the curriculum addressed a fundamental skill that Benny is still working on, saying your own name. As he tapped out the syllables of his name using the drum, we could see Benny getting visibly excited. The combination of the physical sensation of tapping the drum, the auditory input of hearing the sounds and the visual input of seeing the syllables tapped out, all worked together to help him access this information in a new way.
Benny has apraxia of speech, a motor planning issue between the brain and the muscles required for accurate, reproducible speech. One of the things that helps him to be able to create speech is a physical gesture, so many of the words that he is able to say verbally are ones that he learned early on through sign language as a baby. For Benny, learning through music and movement is so much more effective on so many levels, the TRAP curriculum is perfect for him. Eddie had developed the TRAP curriculum from his own experience. He was a touring rock and roll musician who created the program after an accident left him paralyzed from the neck down. Through force of will and divine intervention Eddie taught himself to walk, talk and play the drums again. Today most people would never suspect that he is a quadriplegic. Despite the fact that he uses a cane Eddie's energy is so unstoppable that this is the last thing most people notice about him. For over 20 years Eddie has built schools and programs all over the world to help others overcome similar obstacles to achieve their goals. After moving back to Tucson and becoming frustrated by the lack of options for families of children with special needs, I began to dream of providing something different, something that families with children who did not fit into the typical mold could take advantage of. I began to dream of a school. A school that would include all types of learners. As I started to talk to people about this school, it began to take shape. Soon I had a beautiful space and an entire committee of lovely people from First Christian Church in Tucson working with me to help make this happen. I called Eddie up and asked him what he thought about bringing TRAP to Tucson as part of my dream of starting an inclusive school. His answer was a resounding "Yes!", and as always his infectious positivity gave me the confidence I needed to start making it happen. After months of planning the event is almost upon us. Through the generosity of First Christian Church in providing space and some grant funding we are able to cover the costs of the workshop to provide this to the community asking only a small commitment of a $20 donation to TRAP, with scholarships available to those in need. If you are interested in attending the workshop on May 6th and 7th 2022, please click here for all the details. It's going to be a beautiful event!  This morning my son Benny's first grade teacher called in response to a concerned email I had sent regarding his AAC device that we call his "talker". He had been coming home with the volume turned down so low that we could barely hear him in a quiet room, and I was worried that he was being silenced in class. His teacher reassured me that she made sure that he always had his talker available and turned up loud enough to be heard, and she told me a story that for most parents would be so commonplace as to not be remarked upon, but for me brought tears of joy to my eyes.
She told me that the previous day it was Benny's turn to be called upon during storytime. She said that he had his talker ready and his response was exactly right. Everyone was happy and excited for him which prompted him to use his talker to continue talking, but when she let him know that it was time for the next student to have their turn he quieted down. This is the kind of interaction that students in a general education classroom have all the time. For most students it is not a big deal to answer a question in class, but for our family this interaction is the result of years of hard work. When Benny was diagnosed with Down syndrome prenatally, we knew that he would most likely have to work a lot harder to gain speech than a typical child. What we weren’t expecting was that Benny would gain speech and then lose it again. After years of standard speech therapy Benny was struggling to gain speech only to slide back again. A speech pathologist with experience in apraxia gave him a diagnosis of childhood Apraxia of speech. This diagnosis is different than a typical speech delay because it is a motor speech disorder in which the child's brain is unable to communicate appropriately with the muscles of the mouth and tongue, leaving the child unable to articulate clearly and consistently. We knew that Benny could understand what we were saying and that he had a lot to say himself, he just needed help saying it. We had taught him sign language as a baby, but unfortunately very few people know sign language, so although this helped mitigate some of his frustration this was not helping him be able to communicate outside of our home. We asked for an AAC device assessment through the Department of Developmental Disabilities, and after looking at a variety of different devices decided on a Tobii Dynovax AAC device. We were fortunate enough to receive training from a speech pathologist focused on the use of AAC devices. In addition, Tobii Dynovax has a robust customer service program with local reps available to answer questions, and we were fortunate that they happened to be having a training workshop in our area that I was able to attend. All of this was very helpful to get us started on how to support Benny in learning how to use the talker. Even with all of this support it took years for him to get comfortable and confident enough to be able to have an interaction like he had in class yesterday. For a child like Benny to be able to raise his hand in class and successfully answer a question there were a lot of steps we had to take. Acquiring and learning how to use an AAC device took a lot of time and effort. So did finding a school and teacher willing to have Benny attend the general education classroom with his peers. A few years ago I wasn't sure if it would ever be possible for Benny to raise his hand and answer a question in class. There were so many steps to take for him to get there. Now that I have seen how beneficial the AAC Device has been I am excited to continue to work to support Benny in using it, and other tech that can help him overcome his challenges so that he can continue to participate fully in his community at school and beyond. When I was in sixth grade my literature teacher assigned a slew of books about World War II. “The Nazis wanted to create a perfect race of people with white skin and blue eyes.” Mrs. Winston told the class ominously as she pointed to herself, “I wouldn’t have survived. I would have been one of the people they would have rounded up and sent to the gas chamber. Who here would have survived? Who in this room would make it if they were killing people with dark hair and brown eyes?” Everyone looked at me and shouted my name as I sunk lower in my desk. As one of the only white kids at an American Indian reservation school I did not at all appreciate Mrs. Winston’s pointing out the obvious to everyone. I was white. I was one of the whitest people around. Out there, in the rest of the world, my whiteness protected me. Here my whiteness worked against me and subjected me to both the hate of being different and the hate that comes from being part of the enemy who has subjected your people to years of genocide and oppression. That moment in the classroom stuck with me throughout the rest of my life. My white skin was a constant reminder that I was a part of a painful history that I had not caused but that I was implicitly a part of. It took me a very long time to learn to accept myself. To come to terms with the fact that what I looked at in the mirror was not a reflection to feel ashamed of, but one that I could look at and love. Despite, or maybe because of, the pain of this, I determined that I would not be someone who would be a part of hatred or violence. I had read many books about the Jewish holocaust, and always wondered how so many Germans had stood by and let these atrocities happen to the people around them. I decided that if it came down to it, I would put my own life at risk to stand against Nazis. But I always hoped that I would never be put to the test when it came down to it. Last Wednesday I watched in horror as a mob of angry white people with confederate flags, swastikas and other white supremacist signs and clothing violently breached our nation’s capitol building as the president egged them on and refused to call the national guard for assistance. The whole experience left me shaken, the world forever changed, my country unrecognizable to me. I felt that I must do something, to stand up against this violation. Someone recommended checking out a group called refuse fascism that was organizing a national response. I searched for an event in Santa Barbara, but there wasn’t one. I decided to host one myself.  That Saturday I showed up to the event late and a little nervous. A small handful of people were there, and we held signs and made art and made friends. For the first time in a long time I felt a little bit hopeful. We decided that we wanted to do it again, and maybe invite more people and make a little more noise. “We’ll have music and art and make it fun and peaceful and loving!” we said. We would contact other organizations and see if anyone else wanted to show up with us. For the first time in a long time I didn’t feel sad and alone as the country spiraled downward. I felt connected and excited that other people were out there who felt the same way.  But then I got a message from an old friend asking some difficult questions about how we plan to include black voices, and how we plan to protect people of color who may be targeted by the nature of our event. I gave her a call and my heart sank as we talked. She tells me that as a black woman and an educator she is afraid that my event will attract young people of color who will then potentially be exposed to both covid and white supremacists, both of which they are more at risk from being hurt by. I am torn between the need to stand up against the coup, and the desire to protect young people of color who might also want to stand with me. I am not sure where my responsibility lies. Is it my responsibility to stand up to Nazis when I see them, and to do anything and everything I can to impact legislators and the people around me to take action? Or is it my responsibility to model safety to those around me who are more vulnerable than I am? What takes more courage? What will have a greater impact on the world? While trying to explore these questions we meet with an experienced local activist. She says that we should have “consulted black and brown elders” about the right way to demonstrate. Because we have not done so, the protests we’ve organized are done with the mindset of white supremacy. I’m instructed to speak with a group called SURJ who are white activists who provide support roles to social justice organizations led by people of color. Reluctantly I agree to talk to a couple of activists from SURJ. I’m feeling increasingly uncomfortable, and I find myself unable to articulate to them how wrong it feels to me to be told that I have to ask permission from a “black or brown elder” if I want to organize a protest against a coup on our government. “I’m not trying to be a white ally.” I say. I want them to understand that it is not that I’m not a white ally either, just that in this instance I’m not trying to stand up in support of someone else’s movement, I'm standing up not just for every American impacted by this, but for myself, my children and my country. The conversation continues awkwardly until I am told that I can “NEVER FORGET” my whiteness. The pain of this runs so deep I can’t respond. I’m right back in that classroom again. I had hoped that activists from SURJ would want to work with us, and I’ve just royally screwed that up. I feel sad and hurt and defensive and I don't know how to fix it.  I bring all of these questions and concerns back to my amazing little organizing team to see how they want to move forward. We make some changes to emphasize safety including illuminating our car caravan option as a safer way to participate, reiterating our covid safety rules and reminding people of the potential dangers of those who agree with the ideology behind the coup showing up to harass us. We discuss cancelling the event altogether for safety, but ultimately come to the conclusion that “having a vigorous public presence against the coup is itself a public safety benefit.”
This has been an emotional process for me personally, bringing up some very deep feelings. As we head into MLK day weekend, I take heart, and inspiration from him. This morning I watched a speech by Martin Luther King Jr called “The Other America”. In it he talks about the disparities between those who grow up privileged and those who do not. His speech is full of the reality of our country; it's history of slavery, genocide and racism, and the struggle to overcome our past to achieve true liberty and justice for all. “I realize and understand the discontent and the agony and the disappointment and even the bitterness of those who feel that whites in America cannot be trusted.” he says. “And I would be the first to say that there are all too many who are still guided by the racist ethos. And I am still convinced that there are still many white persons of good will. And I'm happy to say that I see them every day in the student generation who cherish democratic principles and justice above principle, and who will stick with the cause of justice and the cause of Civil Rights and the cause of peace throughout the days ahead. And so I refuse to despair. I think we're gonna achieve our freedom because however much America strays away from the ideals of justice, the goal of America is freedom.” Hearing that, I do not think MLK would have called me a white supremacist for organizing against this coup as quickly as I knew how. I think he knew, like I know, that you cannot fight racism with racism. The only way to heal from racism is with love, acceptance and understanding. Tomorrow I will show up in front of my courthouse here in Santa Barbara, and I will help anyone who wishes to show up to do so. Covid is scary right now so I will be doing my best to protect myself and others by wearing an n95 mask, standing 15 feet apart from others while I help to decorate cars and banners so that a car caravan can circle the courthouse, and support those who do not have cars to stand 15 feet apart around the Santa Barbara courthouse in masks holding signs. Together we will ask our legislators to stand strong, and send a powerful message to our community that those who support fascism are not welcome here. I encourage those who are not in Santa Barbara or unable to attend in person to check out these suggestions for actions of transformation and peace for MLK day. I hope that wherever you are and however that you are able to that you will show up in some way to join me. Love and peace and acceptance will win in the end, as long as we are willing to fight for it.  Having a school aged child sucks right now. Having a school aged child with special needs is unbelievably difficult. There's this thing that seems to be missing in our national dialogue about schooling during the pandemic, and that is the fact that most of us need our children to go to school so that we have childcare for them. I don't understand how parents are doing this. Teaching our young children at home requires near constant vigilance. It is a logistically impossible situation for most families made all the more difficult by the fact that we aren't automatically giving parents funding to stay home and teach their children until school can be in person again. My family is lucky enough that we can work from home and have enough flexibility to care for our children, but it still feels impossibly hard. Our son Benny has a dual diagnosis of Autism and Down syndrome and has been home with us full time without any kind of childcare or in-person support for his extra challenges since mid-March. And it is August. And we are exhausted. Not just the exhausted like I need a day to myself to recover and I'll be fine, the exhausted like I am so physically, emotionally, mentally and spiritually tired that I don't know how I can go on another moment kind of exhausted. And in the midst of this exhaustion, my son started kindergarten. And instead of a bus coming and whisking him away so my husband Max and I could have a moments reprieve from the bone grinding task of keeping our little one alive, we are being forced into some kind of horrible punishment for parents called "distance learning".  What distance learning entails is pretending that my son is going to learn something from a series of zoom calls with his teacher when we can't even get him to put pants on anymore. Don't be fooled by these pictures, I am a crafty photographer and managed to capture a couple of rare moments Max got Benny to look at the computer during a zoom lesson. Seconds after this last picture was taken Benny slammed the laptop shut and refused to get back on the rest of the lesson. The jig is up. We don't know what we're doing, the school doesn't know what it's doing, and my son is no fool. He's not going to sit down in front of the computer and smile and nod while his teacher tries to pretend that this is anything like a kindergarten classroom. Add to that the fact that the therapies he receives from the school are also only being given over zoom, and we can basically guarantee that this is a lost year for Benny. And a lost year for us. Every moment that Benny is supposed to be on a zoom call we have to be there with him trying to get him to attend it. Every project that he needs to do has to be prepared by us and we have to assist him for every aspect of it. The occupational therapist sends us a project for us to have ready and asks if we can prepare it for the session. Can we print out this pdf? Can we cut it out ahead of time? Can we have tongs and little bowls and play dough available? There is a long list of school supplies to have on hand, scissors, glue, paint, crayons, q-tips... Later I look through the directions, and sit down to cut out the forms. It's all so much work. Time eaten out of my life that I don't have to give, but if I don't find some way to do this I will fail my child. Every step of this project falls on our shoulders, just another weight on a burden so heavy it is beginning to crush us. Because he needs help doing every task, every aspect of Benny's education is now up to us.  We knew from trying to do distance learning and distance therapies at the end of the last school year that zoom wasn't going to work for him, or us, as a replacement for kindergarten, but we decided to give it a try anyway because we don't know what else to do.
The first day of classes we were surprised to find out that he only had one half hour session at the end of the day in the general education classroom on his schedule, and everything else was in special ed. Even though I knew the zoom format wasn't going to work for Benny either way, I was taken aback that this was the setup after we had worked so hard to make sure he was going to be in the general education classroom as much as possible, and this was supposed to be at least 60% of the time according to his Individualized Education Plan (IEP). We are now looking at less than 25% of his time in class being spent in the gen ed class. We met with the special education teacher and the special education director and told them how upset we were about this. They agreed to add Benny to the other general education zoom calls for now to see how it would go. We decided to give it a try, because at the very least we could see what he was going to be missing out on. The first general education kindergarten zoom class we tried to participate in the teacher admonished the kids to sit up straight, pay attention, and speak clearly and appropriately in their responses. This last part was heartbreaking for us because Benny has a major speech delay. He uses a combination of verbal approximations, sign language and a communication device we call his "talker" for the majority of his communication. That morning the teacher proceeded to call on every child to say "good morning" to the class. If we had been prepared for this we could have made sure to practice this using his talker, but instead we felt embarrassed because this simple task is an impossible one for our child to perform without support. Why had I pushed for him to be in this class? Wouldn't it just be easier to accept that he belongs in special ed? Max has taken time off this week to help get kindergarten sorted out. He spent most of the zoom classes doing everything in his power to get Benny to sit for more than two minutes straight. "This isn't working out" we agree. "He doesn't like either, but he spends more time paying attention to the special education zoom calls." Max says. "Maybe we should just-" I stop him and ask him to wait, let me write about this so I can gather my thoughts together, figure out how to explain to him why I don't want to give up on fighting for inclusion. Even if it is a pandemic. Even if we are both so tired we have almost no fight left. In an ideal world Benny would be in a class with support for his speech delays and a mixture of kids of all abilities to interact with and model behavior from. But it is far from an ideal world. In the world we're in we have to decide between a class with typical peers, high expectations and no support, or a class of peers with special needs, low expectations and some support. And neither class is in a format that works for him. There are no good options here. And the thing is, I don't know what the right thing is for Benny in this situation. How do we fight for inclusion when we're confined to our homes? If we are all socially distancing what is there to be included in? The other day I was briefly on social media because I've mostly been avoiding it to protect my mental health. I saw a post that I tried to unsee. Another mom of a child with down syndrome sharing screenshots of an ugly conversation. A parent in a district that was only letting kids with special needs attend school wrote that letting children with special needs attend school was unfair because they aren't going to do anything with their lives anyway, so why should they get extra resources that the rest of the kids don't? It hurts. How our society treats their most vulnerable members shows how well, or how poorly, that society is doing. We are not doing ok. Everyone is scared, resources are scant, and the first to get turned against are the ones who most need to be protected. Ultimately I know there is an answer somewhere, and it's not in pretending that a zoom call with a teacher can replace a classroom. These zoom calls don't work for my son, and they don't work for my family. Do they work for anyone? In my heart I am still an optimist. I believe in human ingenuity. Maybe it's time to rethink the whole thing. Maybe all of our systems are failing, and it's ok to let them fail because they were never that good to begin with. If I look at it from a different angle, I can be grateful for distance learning because now I can see what was so clearly missing at this school all along. Inclusion has never meant sticking a child with special needs in a general education classroom just so they can meet some ratio on paper. Putting a child with special needs in any kind of classroom without giving them the proper supports is setting them up to fail. And just like Benny was set up to fail in the general education classroom, we were set up to fail here at home. It hurts because what we are failing at is so critical. Most kids will catch up, but when our son is already so far behind, how will he ever be able to catch up? When I reimagine an education system in which my son is truly included, even during social distancing, I imagine a system that optimizes the experience for every student. One in which we use technology as an equalizer, and take the time to make sure that each child has their own individualized education plan, not just the ones who are identified as having special needs. Why can't we have that? If we're stuck at home using technology to learn anyway, why not take advantage of this time to make everything more accessible for everyone? I think about my own schooling, and how stupid it all was. The way I was made to feel bad about myself because of the challenges I had with organization, and the struggles I had with boredom. So much of the work seemed pointless, and looking back as an adult I can confirm, it was. Numbers were gathered and used against us as weapons. We were categorized and sorted into groups according to standards that upon further reflection are completely irrelevant in any sort of real way. All these years later I am sending my kids to school and seeing that we have continued to shape our education system based on these standards even though all of the research about how people learn shows that this doesn't work. We don't have to do this anymore. There is no future in it. It's a flawed system that barely worked before and it's completely broken now. Life is short, and the world is on fire. There's no time to pretend that this messed up system of ours is still working. It's broken, I'm broken, I'm at my end of being able to pretend like everything is ok. I can't do this and I shouldn't have to. There's got to be a better way. Not just for Benny, for us all.  "Happy Birthday Joel" When I brought my friend Joel with me to see if my church needed any help during their "hospitality week" of hosting asylum seekers, I never imagined that a few months later Joel would have become so involved with those hospitality weeks that he would choose to celebrate his birthday there. Before dinner on his birthday night I joined his family and the asylum seeker families as we all surrounded Joel in a circle. A Guatemalan woman gave him a long blessing in Spanish. Although I could not understand most of the words, their meaning came across plainly and filled my heart in a way that only the most pure form of love and gratitude can. After dinner Joel shared his birthday cake and ice cream with the families and then brought everyone out to hit a piñata. Children laughed and ran to catch the rain of candy that showered down. A casual observer would never know that these were families who had just spent months traveling and risking their lives to escape situations so harrowing that their stories would bring me to tears.  Joel stands in the church banquet hall, the cots of the asylum seekers behind him. But that night, because of the generous spirit of a tiny congregation in Tucson, those children got to be children again. They got to laugh and play again. Those families had a brief respite where they could eat good food, shower, relax and feel safe for a few days as they journeyed on their way to their sponsors who would help them complete the asylum process. It is one thing to hear the statistics about those seeking asylum in the United States, it is quite another to spend time with the families who are being impacted, to hear their stories, to see the love they have for their children, the gratitude they have for the little things we take for granted - food, sleep, shelter, safety. A few days later Joel shared a screenshot of a translation on his phone from one of the asylum seekers. "As a family we are very grateful. Thank you for all, God bless you."  As a family we are very grateful. Thank you for all, God bless you. There is very little that can fill the soul quite like receiving a message like this, and knowing that you are part of a community that values compassion over all else. Asylum seekers are people who are legally seeking citizenship within the United States. They have committed no crime other than being born in the wrong place at the wrong time. But when they get to the border they are treated like criminals. They are detained until the bogged down courts can process them, and they are forced to give up all of their possessions, including their shoelaces and bras, which are not returned. Sometimes they are separated from their children. Sometimes they are made to wait in dangerous border towns in Mexico for months, where they are vulnerable to predators and human trafficking. The exact same day that the asylum seekers were blessing Joel for his compassion and sharing cake and ice cream with us, the Supreme Court passed a new ruling by the Trump administration that made it nearly impossible for asylum seekers to get past the border. The rule bars asylum applications from anyone who has not already been denied asylum in one of the countries they traveled to on their way to the United States. The ruling forces migrants to apply for asylum in dangerous countries where the situations are just as bad or sometimes even worse than the dire predicaments they are fleeing from. It is a terrible, cruel, heartless ruling, and the impact was immediate. For several months after the ruling there were no hospitality weeks at all. The weeks were scheduled and then cancelled because there were not enough asylum seekers who had made it through the system. Our hearts broke because we knew what this meant on a very personal level. We weren't just thinking of some abstract idea of an immigrant from a foreign country, we were thinking of the lovely people we had met, who despite all that life had handed them were still so grateful for simple generosity. We thought of all the parents, desperate to protect their children, being turned away from their requests for safety, and it hurt. Today, January 29th, 2020, is the Faith4Asylum National Day of Prayer and Action to Save Asylum. Wherever you are, please find or start an action this week and join us in asking our leaders to please show some compassion. All people are people. All people deserve respect and dignity. The church where Joel and I helped out during hospitality weeks is First Christian Church. They will be participating in Tucson this Friday, January 31st at 4:30pm at the Tucson Federal Building, please join us if you're in the area. (300 West Congress) We can change this tide of cruelty, with the strength of our compassion. People do not leave their homes and communities and travel thousands of miles because they have other options. We do have room for them. We have buildings sitting empty, we have jobs that are not filled, and we have room in our hearts to welcome those who most need it. Don't turn away from it. Don't think that just because you are lucky enough to have been born in the right place at the right time that you are different or better than those who weren't. Stand up for what is right. Stand up for those who can't stand up for themselves. Join us. Tell congress now to protect asylum seekers. Thank you!  This Saturday the peace organization CodePink is calling for an International Day of Action for people around the world to stand up against the United States going to war with Iran. Check out the CodePink website to join or create a rally in your area. If you are in the Tucson area you can join other concerned citizens and representatives from the local organizations of Extinction Rebellion, Veterans for Peace and the Tucson Peace Center as they protest in unity with CodePink. The rally will begin at 4:30 pm in front of the First Christian Church on the corner of Speedway and Euclid. The Peace Center is hosting a free spaghetti dinner for peace activists afterwards in the dining hall of the First Christian Church. The spaghetti is rumored to be quite excellent and there will be gluten free options as well. Please come and support the call for peace. War is not good for anyone. It hurts our people and our planet. Please, come stand with us in support of peace.  Join the protest this Saturday January 25th, 2020 at 4:30 at the corner of Speedway & Euclid in Tucson Last night I dreamt
Bad guys were surrounding me They wanted something I did not want to give I awoke afraid It was midnight My son’s small foot pressed against my back I was alone and not alone The house creaked and rocked This is the time When all my fears and worries come alive Crawling into my bed to haunt me But I must be brave, for I am a mother Everyone I know is anxious Tight bellies that ache, night terrors that wake A friend asks how I am so calm When her feelings are bubbling on the surface I didn’t have an answer for her then Now, in the middle of the night Searching for a pill to soothe my troubled thoughts I contemplate this question How am I so calm When the people in charge Seem to be on a mission To destroy all life on the planet? How am I so calm When everyone around me Seems to be dying of cancer Or some other awful disease? How am I so calm When my community is being torn apart By mental illness Alcoholism and drug addiction? How am I so calm When this is the world My children will inherit After I'm gone In this blackest of nights I say prayers of gratitude Thank you God, thank you God Thank you God My heart stops racing I begin to relax, Now I remember How I am so calm I am so calm Because there is nothing I can do That will change the outcome All I can do is thank God for what I have Anxiety is the feeling we get When we are trying to control Something that is Uncontrollable I am of the unpopular opinion That I do not have control Over anything other than My own thoughts I am of the unpopular opinion That death is inevitable And I honor the animal By eating it I am of the unpopular opinion That no matter what happens It is what was meant to be So just let it go Or maybe I am not so calm at all I am the storm about to wake And it’s not me, but it’s the bad guys Who should be afraid |
Archives
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
All
|
RSS Feed