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?
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.
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.
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."
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.
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
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
Anyone who has ever had to rush to a public bathroom to deal with their infant or toddler's horrific poop explosion understands the feeling of horror one experiences upon discovering that there is no changing table available. This is the problem that bill HB2529 attempts to address here in Arizona.
The bill was written to address the general concerns of parents of infants and young children, but there is another group of parents who heard about the bill and decided to get involved. These are parents of teenage and adult children who are still in diapers, a group who has called themselves Dignified Changes.
If you haven't experienced it, it's hard to fully understand the daily struggles of parents whose teenage and adult children need diaper changes, and what that looks like in a public space.
This is an issue that I admit I didn't even realize was a problem until I heard about it from other parents in my local disability community. My friends told stories about the isolation of deciding not to venture out to events and community spaces, or the humiliation of trying to change a diaper in the back of a pickup truck or on the floor of a public restroom.
Having heard about bill HB2529, this group of parents and their supporters worked with legislators to get an amendment added to the bill to include adult changing stations in new publicly funded buildings.
In an ideal world a universal changing station would include a wheelchair hoist, and would be available in every public building in the state.
The compromise that Dignified Changes came to with legislators was that the new universal changing stations would be large enough to push a wheelchair into and include a table large enough for an adult to lie down on, and low enough for another adult to be able to lift them from a wheelchair onto the surface. The average cost of this would be around $300-400, making the impact of this on taxpayers very minimal.
We were all very excited when the amendment was voted on and passed unanimously by both Republicans and Democrats on the Health and Human Services Committee. Now all that had to happen was for the bill itself to be added to the Rules Committee agenda for review and a vote, which we all thought would be a simple step in the process.
Unfortunately in our excitement we had forgotten that some politicians see our democracy as a game, with the concerns of their constituents used as a ball to kick around the political field.
So instead of the bill moving forward it has gotten stuck on the desk of Representative Anthony Kern.
Kern is not only refusing to put the bill on the agenda, he's also not responding to the many emails and phone calls from concerned citizens who want to know why.
In the meantime he has had time to add to the agenda such important and critical bills as one on whether our state drink should be lemonade.
To be clear, there is no logical or party based reason that bill HB2529 should not be passed. This is not a bill that would impact local businesses or cost taxpayers thousands more dollars in renovations to already built public spaces.
This bill only impacts future builds of publicly funded buildings and large renovations, adding a minor cost to the project and a major benefit to the community. This bill was unanimously passed by both Republican and Democratic legislators on the Health and Human Services Committee.
Mr. Kern has an opportunity to be a champion to Arizona families and the disability community. All he needs to do to help make the lives of thousands of people better is to add this bill to the agenda so that it can be reviewed and voted on.
If you are outraged by this, as you should be, feel free to give Mr Kern, or Governor Doug Ducey, a piece of your mind and let them know what you think about it.
There are many easy ways to get involved and help this bill pass: join the facebook group, call or email Nbarto@azleg.gov/602-926-5766, follow the hashtag #dignifiedchanges on instagram or twitter, or come to the state capital tomorrow to "play ball" on the capitol lawn with other families hoping for "change" in Arizona's public bathrooms.
One day while talking about our newborn son who needed to be on oxygen my husband Max and I had an epiphany. "It's like our son is a space explorer! He just needs an oxygen pack to get around." And so the concept of The Littlest Astronaut was born.
Max and I both wanted to be astronauts when we were little, so we found the concept of a baby space explorer very appealing.
It is Down syndrome awareness month and I have to tell you, sometimes I wish that I could be a little less aware of Down syndrome. Some days I don't feel like being an advocate, or a mama bear or a warrior mom. Some days I just want to be a regular old mom.
This weekend is my birthday and I will be spending it at a leadership workshop on how to advocate for people with disabilities.
The next weekend I'll be at the Buddy walk, listening to speeches about Down syndrome and walking with my son Benny.
Personally I would rather people forget that Benny has Down syndrome at all. I wish they could just see him for who he is - a bright and bubbly preschooler.
But even though I'm tired of talking about Down syndrome I keep on doing it. I keep on writing blog posts and sharing in real life and on social media because every day I see how much prejudice there still is against people with Down syndrome.
Disabilities are the last acceptable prejudice and I want to change that in my lifetime. For Benny. And for all of the many people who have disabilities. And so I keep soldiering on this uphill battle, thankful to all who came before me and paved the way for me and my family.
Recently I encountered this prejudice while looking into kindergartens with my friend who has a typical son the same age as Benny. The experience was heartbreaking.
A woman giving a tour at one middle of the road charter school was stumped when my friend asked what kind of services they had for students with special needs. She had just finished waxing poetic about the self-contained classroom for gifted and talented students (GATE) but stuttered "special needs?" and looked completely perplexed as to why we would ask about something so obviously horrifying. (Nevermind that services for gifted students are also under the umbrella of special education.)
"My son has Down syndrome" I explained.
"Oh, we've never had any students with Down syndrome. I don't know what we would be able to provide for a student with Down syndrome." she said looking absolutely petrified at the thought of my son and his potential extra needs coming to her school.
Defensively I told her that I had visited our designated school and that it was far superior to this one, to which she looked relieved and told me that I should "just keep him there".
The next day my friend called me ecstatic about a public Montessori school he had just toured. I listened excitedly as he talked about the open classrooms with multiple grades, the project based learning, the GATE certified teachers in every classroom and the violin training every student receives. Then he mentioned that he had asked and the school didn't have any resources for kids with special needs like Benny.
I got off the phone and cried. I wanted to be happy for my friend, I really did, but in that moment all I could feel was heartbreak that my son wasn't welcome at that school.
And that is what discrimination looks like. These publicly funded schools are actually required by law to provide a free appropriate public education to all students regardless of their extra needs, but they don't want to. So instead they discourage parents of children with disabilities from enrolling their children, despite decades of research that shows undeniably that an inclusion model that provides appropriate accommodations is far superior for every student in the classroom.
Last night the fact that my son is being denied the same opportunities for kindergarten as his peers made me cry.
But tomorrow I will not cry. Tomorrow I will arm myself with an idea. The IDEA specifically, the Individuals with Disabilities Education Act. And I am going to go to the district office and I am going to give them a piece of my mind.
This is what happens to parents of kids who have Down syndrome. You get tired of talking about it. You get tired of bringing everyone's awareness to it. You wish everyone would be less aware of it. But then somebody discriminates against your kid because of it, and they awaken the advocate, the mama bear and the warrior parent inside of you. Soon they will hear your roar and they will know no mercy.
Tomorrow we will be wearing our crazy socks (and shoes) for World Down Syndrome Day to represent the joy that people who are a little bit different bring into our lives. This will be the third World Down Syndrome Day we've celebrated since having our son Benny, and I have to say that in his three short years he's already busted a lot of the stereotypes I had about trisomy 21.
One of the concerns that every parent has for their child is whether or not they will be able to have a career when they grow up. In America the unemployment statistics for people with developmental disabilities is unfortunately very high.
But Benny has already had his first paid job! When he was just two years old Benny landed a modeling gig with Target. He already has his very own bank account.
We had heard that it's rare for people with Down syndrome to be able to drive. This was something my husband was especially concerned about. Watching Benny drive his power wheels around we are pretty certain that he will be able to drive a real car around someday if he wants to.
Another worry has been whether or not Benny will be able to make and keep friends. So far he has proven to be very outgoing, and every day when I pick him up from school his friends say bye to him and give him hugs.
He has also made several friends outside of school who really enjoy his company. Although Benny has limited speech, he is very expressive and imaginative in his play. In most ways he is a pretty typical boy - he and his friends love to play with trains and cars and action figures.
He also loves to play with toy guns, and will pretend to shoot his friends, and very dramatically fall down after getting shot himself. Unfortunately this is starting to get him in trouble at school, so I'm working on redirecting this behavior, although I secretly love that he is such a little stuntman!
Recently we decided that it was time to talk to one of his friends about the fact that Benny has down syndrome.
Because his friend is only four we kept the information very simple, and just explained that Benny has special needs because he has Down syndrome, which means he was born with an extra chromosome. That this little difference means that sometimes it takes him longer to figure out how to do things, and sometimes it's harder for him to understand or communicate. His friend listened to our explanation, said "ok", and moved on to play with his train tracks.
The two have been playing together for over a year now and I had been nervous about how this conversation might go. I feel very lucky that this little boy has such a big, sweet heart that he completely accepted this new information about his friend, and has continued to ask to have playdates with Benny even after finding out about his Down syndrome.
This is the kind of response that I was hoping for, and that I wish everyone would have when they meet someone with Down syndrome. "It's just a little difference, no big deal, let's hang out!"
Since 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!