by Shannon Aronin on April 16th, 2018

​After marching for our lives, I like many was left wondering what do we do next? Last week I attended a meeting for Moms Demand Action for Gun Sense in America, and while I brought my whole identity, in groups of moms in general I always have my special needs parenting hat on. Moms Demand Action is part of the gun violence prevention movement. The organization, which is part of the larger Everytown for Gun Safety, supports both the second amendment AND common sense gun laws. Everytown for Gun Safety is the largest gun violence prevention organization in the country with nearly 4 million supporters. Everytown and Moms Demand Action work to keep guns out of the hands of people with dangerous histories, including felons, domestic abusers, and people with dangerous mental illnesses. 

It was a first ever brand new chapter meeting and a bunch of my friends were going. That’s not why I went. Reducing gun violence today has become my issue, one I'm actually willing to devote some volunteer hours towards. I never thought it would be, but as @rheabutcher said on Twitter after Emma Gonzalez' We Call BS speech, I’m joining whatever political party those kids down in Florida just started. I am so inspired by today’s youth. But inspiration, like friendship, isn’t what made me go to the meeting.

I am a victim of gun violence, a fact I didn’t really consider until the Moms Demand Action sign in sheet asked if I was. It was 15 years ago, I’ve worked through it in therapy. I also have a uniquely empowering story whereby I got to help catch and sentence (I argued for a reduced sentence!) my mugger and even got an apology. No one gets that. My story is dripping with so much privilege I honestly hadn’t thought about it counting. So that’s still not why I went to the meeting last night.

I went to the Moms Demand Action meeting last night because of lock down drills, something so common most of our kids are used to them by now. I’m not, not at all. I get that this is important to practice but we are traumatizing an entire generation en masse.

And I have a problem. My little boy is deeply non-compliant. I remember before I had a child I would have said I want an independent thinker, not a compliant child. But you don’t realize the dozens of times a day we actually have to comply with things as an adult. Figuring out how not to squash his curiosity and individuality while teaching him to follow basic instructions is no small feat.

Unfortunately, he recently messed up during a fire drill by playing air guitar instead of listening. Now we run through safety protocols for fire, earthquake, and lockdown drills at home too. We have explicitly explained that a lockdown is an active shooter drill. We’ve begged him to be quiet. But what if, as is somewhat likely, he Just. Can’t. Shut. Up.? Will he be the kid who gets his whole class slaughtered? 

So that’s why I've joined Moms Demand Action for Gun Sense in America. I hope you’ll join me at the next meeting in the San Gabriel Valley if you are local, or that you get involved in your local communities. Enough is enough; this is too important to sit on the sidelines.

by Shannon Aronin on December 5th, 2017

​Dear Governor Brown and the California State Legislature,

Thank you. Three years ago my family moved from Texas to Los Angeles. The aid the state has provided my special needs child has been priceless and is making a huge difference in his life.

Because of sensible tax policies the state is able to provide a series of supports. Who knows what the impact of the current administration on our great state will be yet, but for now, thank you. I hope you can maintain these important programs.

My son receives the MediCAL waiver through the East Los Angeles Regional Center. This pays for his evidence-based autism treatment —Applied Behavior Analysis — up to 15 hours per week in our home. We started working with them in February 2017, and SEEK Education in San Gabriel, CA has been an absolute godsend. My child complies with basic directions now! He eats neatly. His ability to assess a situation is better. He does significant chores. He’s learned new coping strategies. He’s more open to compromise. He can get ready in the morning in a reasonable time! He tries to yell and interrupt less. His fine and gross motor skills have improved moderately. They are working on his memory. He learned to like reading again. This is ALL a direct result of ABA program and we’ve only had them since February.

The Regional Center pays for his social skills group and respite care. My dearest public servants, how can I ever thank you enough for 16 hours per month of respite care? My family is truly middle class and babysitters are not really in our budget. We don’t live near any extended family and it’s a lot to ask of a friend. But the chance to recharge for families with children with any disabilities is so important. Caregiver burnout is real, no matter how much we love our children. My son also receives private traditional therapy that we pay for out of pocket, which we can afford to do because of all the other support. MediCAL also covers his psychiatric care and medications.

The Temple City Unified School District recently funded a much needed non public school for kids with emotional disturbance for two and a half years. Because of his time there he is ready for a less restrictive environment. We were convinced of this when he participated in the heavily subsidized and fully integrated Temple City Parks & Rec summer camp. Hillsides, the non public school he attended, did a great job and he had a place to improve.

Now he is ready for bigger and better things that will address his gifted academic needs on a public school campus. Exactly as special ed is supposed to work, he will now have integrated lunch, recess, gym, and special activities. He has the opportunity to earn his way into mainstream classes. There are ten kids in his class, one teacher, and three aides. This special program for high functioning kids is a program of the West San Gabriel Special Education Local Plan Area (SELPA) and includes students who need these services from fourteen districts.

It breaks my heart to know my friends in Texas and elsewhere can’t get the help they need. I’m grateful to live in a state willing to invest in my child. THIS is what government is good for. THIS is why taxes are worth it. THIS is why public servants across government, nonprofits, and education matter. Thank you for everything you do in the service of the disability community.

by Shannon Aronin on March 9th, 2017

​So after about two years of jumping through diagnostic, administrative, and insurance related hoops, my son has been granted 15 hours of Applied Behavior Analysis  (ABA) treatment weekly. ABA is THE gold standard for autism treatment but there are many who feel it’s tactics are controversial at best. We decided to go into it with an open mind and if we thought it was bad for our child we would stop. That does not mean I expected him to like it. He doesn’t totally hate it which is as much as I can ask for really.

So what’s it like? There are a lot of people involved. The scheduler. The supervisor. The supervisor’s supervisor. And the boots on the ground doing the work day in and day out, the behavior interventionists. Four days each week he spends about 4 hours with a therapist. They play a huge number of board games to focus on turn taking and social interaction. They practice dressing skills. They are about to start work on helping him tolerate a sensory issue that’s troubling him.

I can’t lie, it’s hard. The benefits take time and sometimes it does seem like it gets worse before it gets better. But we have already observed some positive changes in the last month as well. It’s exhausting keeping my house clean enough for company and it’s exhausting having people in the house so much. My son really feels burned out and his access to screens has become so limited because he’s just that busy. It’s a big change.

They seem good at what they do. I don’t know what to expect, but they appear to have a plan to target problem areas like social skills, gross motor delay, sensory tolerance, listening and following instructions. It feels a lot like Karate Kid. The requests are small, but repetitive. Wax on, wax off. But they’re playing board games or other games. Most of the activities are fun. He hates the self reliance ones, but table manners, making his bed, getting showered and dressed, these are things he needs help with that we have been lost on how to get through to him. I’m thrilled someone else is taking a shot at it! So welcome to ABA, raise a glass to results!

by Shannon Aronin on January 26th, 2017

​While I’ve alluded to my own demons in the past, right now I am ready to be more specific. I have been fighting depression for a few months now. I’m fighting like hell, and I’m winning, but it is slow work and oh so hard. While genetics and seratonin are at play, the current political climate is not helping. I see many of my friends struggling as well -- from helplessness, the heavy weight of activism, the challenge of becoming woke, the frustration with those of us not yet woke enough... Right now I see a lot of people woke as hell though that could use a nap.

Self-care is a common theme in these circles. There is a mass call for sustained vigilance. The reality is that the hits from this administration keep coming so hard and so fast, each action is chipping away at my spirit bit by bit. It’s like watching my heart break in slow motion. I’m preparing for this weekend to take another reprieve from the news and social media, my second since the election. The last time I did it I realized that like sports, the news is not impacted by my awareness and taking breaks allows me to catch my breath.

Even as I timidly share what can be used against me as a weakness, I am aware of risk to my gentle soul. Here’s the thing about snowflakes - besides being uniquely beautiful, when we come together we can make an avalanche. That’s what the Women’s March, which I am so glad I was a part of in Los Angeles, set into motion. So we will call. And we will write. And we will march, march, march.

My audience is the disability community. I’ve been learning a lot about the intersection of all the ways we can have privilege or not. Martin Luther King said, “injustice anywhere is a threat to justice everywhere.” We need to show up for each other because there is only strength in numbers. Our causes are intertwined. For example, 50% of all people shot by the police have some kind of disability. Twenty percent of people have a disability so this is an unreasonable representation. Who else is unfairly targeted by police? People of color, specifically Black people. We should be at their marches. Who is victimized by bullies? People with disabilities certainly are. Who else? The LGBTQ community comes to mind. We need to show up for our brothers and sisters. Taking healthcare options from women will pave the road for removing future disability services. And that’s just at the federal level; thirty-two Republican controlled state houses are passing ever more shocking legislation day by day.

We are under attack on so many fronts. Medicaid is at significant risk, as are any and all disability services. Health insurance is a nightmare. And we are presently waiting to see if we will have a new Secretary of Education who understands the Individuals with Disabilities Education Act. If we don’t show up for our neighbors they will not show up for us. The art of protest has never been so important in our lifetimes. We need to show these politicians that the people are hard to control. And lest ye forget how powerful our voices are, because the power of the people is still greater than the people in power, remember that it was the Capital Crawl protest of 1,000 individuals with disabilities that secured sweeping civil rights via the ADA in 1990. Remember the brave folks who came before us and don’t let those currently in power dismantle what was worked so hard for. Do take breaks and step away from the chaos of the world that flashes across our screens, but then get back to the hard work. And never forget 8 year old little Jennifer Keelan, who famously got out of her wheelchair and proclaimed, while crawling to reach the top of the Capitol steps in search of equal civil rights, “I’ll take all night if I have to.”

The Resistance is Here. Save the Protester, Save the World.
Jennifer Keelan, age 8, determined to climb the Capitol steps in 1990 as activists sought and achieved the passage of the ADA. This picture, and her bravery, played a significant role in securing civil rights for people with disabilities. It mattered.

by Shannon Aronin on January 22nd, 2017

​So it's been a while. The truth is I have been at a loss for words I felt I could say publicly, outside of the moderate safety of my Facebook friends list. Perhaps this is is a rite of passage for anyone with anything important to say.

The things I have blogged about, very narrowly disability parenting, in a very intentionally non-partisan way, have finally been getting better. We are, at the moment, in a good groove. He’s getting every service provided by the state and it’s coming together. But frankly the personal is political. We live in California where these rights are almost taken for granted. But in Texas, a state we lived in and love very much, my son would not have those same opportunities.  

This blog has been about disability parenting. But nothing happens in a vacuum. Politics have been both directly tied to disabilities and to other marginalized groups. I believe, as Dr. King said, “Injustice anywhere is a threat to justice everywhere.” I’ll save you the guesswork, I’m a liberal Democrat, and I can no longer write about issues in disability parenting without acknowledging the political framework in which they exist.

I couldn’t ignore it when he mocked a disabled reporter. I can’t ignore how they are going after Medicaid and Obamacare/ACA. I can’t ignore that he nominated a Secretary of Education who did not know what the the IDEA was. If you asked most special needs families what the most important law that affected them personally is, I bet most would say the IDEA. The ADA is no sacred cow. Regulations are the enemy of the current government. I can’t pretend this isn’t happening anymore.

I am part of the resistance. My gift is writing. I need a platform. This is my personal blog. Things might get controversial sometimes. I hope you will stay with me. Engage. That’s what matters now.