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. 

by Shannon Aronin on April 1st, 2016

Have you heard of autism? No? Really??? Do you live under a rock?

Of course you have heard of autism. So what do we need awareness for anyway?

This is my first April as an “autism mom.” The first year since my son was diagnosed as being “on the spectrum.” And I’m a little uncomfortable. First of all, there’s this underlying feeling that I’m not a REAL autism mom. My son has a triple diagnosis (ADHD, mood disorder and Autism Spectrum Disorder, or ASD) is extremely (incessantly) verbal and is gifted. So autism feels like just one ingredient in this alphabet soup, and it was the hardest one to find and last one to be diagnosed. We thought he had other challenges, but he was long past early intervention age when it was discovered. All things being relative, his autism isn’t as severe as many others.

The second reason I am uncomfortable is that now that I am a card carrying member of the autism community, I am deeply aware of how much conflict there is. This is a disability no one can agree on! If you spend any time at all on the interwebs with other autism parents and autistic adults, there’s a lot of debate going on. Issues include awareness vs acceptance, person first language vs identity language (person with autism vs autistic), labels to describe level of functioning, whether or not Applied Behavior Analysis is actually torture, support vs loathing for Autism Speaks (the single largest autism charity) and subsequently the colors and symbols used to raise awareness, vaccines, policy goals, and research. Im overwhelmed by it honestly and I considered just putting my head in the sand and ignoring autism awareness all together.
But that’s not who I am or what I am about. I’m going to dive into those issues and more this April. Just not in this post. I am “lighting it up blue,” apologies to those who don’t like it in advance. I’m all in on the puzzle piece and the color blue because it is simply recognized. Raising awareness works better when everyone can come together and that’s what I want to be a part of, the coming together.

Back to the question why do we need awareness?
  1. Early Intervention. My son is not a typical anything, including autistic. We were hyper aware. We were looking for it. He just wasn’t destined to be figured out early on. Most cases of autism though can be caught by age 2. Early intervention services can make a huge difference in an individual’s functioning and some version of services are offered in most states. If people aren’t aware of the symptoms of autism, they can’t identify it. This remains the most important reason to raise awareness.
  2. My husband and I are not bad parents. My kid is not a bad kid. Sometimes, out in the world, autism happens. It would be great if more strangers had a clue and were kinder and less judgemental.
  3. No matter how you slice it, the rates of autism have grown at a staggering rate. It is not fully explained by increased awareness or changing diagnostic criteria. I would like to know why. In most cases, including my son, I believe genetics play a dominant role. It’s not the vaccines. If there is some environmental factor perhaps triggering genetic predispositions, we should know so we can slow this train down. So we need research that will determine the actual causes of autism, as well as research on effective treatments.
  4. A surprising number of people do live under a rock. They are scared of autism. They act as though you can catch it. They have no idea what to expect. They exclude based on stereotypes. They are nasty trolls on the internet saying hurtful and mean things to autistics and autism families. They arrest and sentence people with disabilities essentially criminalizing autism without any idea what they are doing. Talking about autism makes a difference.
  5. Support! In part because I write about it, a number of friends with kids even newer to this journey than I am have come to me for advice. There are so many mama guides who have gone before me that I have leaned on for both support and information on how to do our best to help our kid. We share resources, laughter and tears. I want the world to know more about our experience so they can relate to it if they are going through it and support the people in their lives that are if they are not.
I have 568 Facebook friends. Thirty-five of them have autistic children. Granted there’s a lot of self-selection bias in there, but it is remarkable the number of friends I’ve known long before we became parents that are on this path too. So for me. For them. For us. Light it up blue, spread awareness and above all, be kind to one another.