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.

by Shannon Aronin on February 4th, 2016

​I came into this motherhood thing READY. I was in my late 20s, married, had a degree, and had started a consulting business so I could work from home with flexibility. I had babysat, worked as a camp counselor, a camp life guard, an after-school program aide, a tutor, a Sunday school teacher, a youth group leader, and a volunteer mentor. I once calculated I had worked with more than 1,000 children by the age of 22. I loved kids, that was just a big part of who I was. I had even worked with kids with some disabilities; when I was 14 my first job was a camp counselor for United Cerebral Palsy.

As it turns out, none of that mattered. I was utterly unprepared for what I got myself into. How could my son be so different from the 1,000 other children I had worked with? With all that experience, surely I must have learned something, right?

Quick, what’s your instinctive response to the following hypothetical scenario?  Your 8 year old, who is doing pretty well in life overall lately despite his ADHD and autism, is being taken to an after-school activity that is, shall we say, “non-preferred,” by a baby sitter. On the way, the sitter stops to buy a bottle of water. Child proceeds to scream at the top of his lungs, run around the store, and just runs faster than the sitter and TWO store employees for ten minutes until one of the employees threatened to call the police.

I remember when my son was a baby my late father told me to stop reading parenting books because it was instinctive. Well Dad, I hope you’re looking down because if you have instinctive answers to some of these situations, I’m sure you could find a way to send me a divine message in a bottle. Otherwise, allow me introduce you to a new brand of parenting, ONLY for parents of children with behavioral challenges and special needs. Seriously, please don’t try this with your neurotypical kids. It’s called “Not Very Intuitive Parenting.”

Not Very Intuitive Parenting (NVIP) means that you must intentionally eschew everything you think you knew about raising children and leave your instincts at the door. Instincts? Ha. Do you want to know how I handled the above situation? First I sent him to his room, for the safety of all involved. Then I called the child psychologist to develop the consequence.  Then I bought poster board and wrote up a big schedule of his activities to see. I’m currently evaluating social story software in between working full time, and dealing with medical appointments for both my child and I.

I have been to meetings where I hear about how “no” is a trigger word many families try to avoid all together. These are not actually overly permissive parents, but people who work very hard to help their children. And you know what? Sometimes it does take experts. It’s not permanent. They are conditioning the child to accept no. It’s just that if it isn’t done slowly and in a way that understands the limitations, their child will never be able to learn what a neurotypical just learns to accept more easily. I’m never going to succeed at getting my child to hop to with the “mom look.” He can’t decode negative facial expressions. Steam could be coming out of my ears but I need to verbally notify him that I am very angry.

I remember it being a fairly obvious rule that you shouldn’t bribe children to get them to do what you want them to do anyway. Do you think that there is any other way to modify, or change, the behavior of someone who is hard wired to have a different behavioral response than a neurotypical person might? Incentivizing behaviors is considered to be a completely legitimate intervention however, and it works.

Applied Behavioral Analysis is the dominant treatment for Autism Spectrum Disorders. This has to be the most Not Very Intuitive thing in the world! You have to become a scientist, analyzing your child’s behaviors for patterns to identify the need he is communicating with the behavior. You have to take data on behaviors like following instructions, toileting, greeting people. Are you serious? Special needs parents are going to do what needs to be done, but are you kidding me?

What I want you to know about Not Very Intuitive Parenting is that usually, if you see me practicing it, I want to shout “this isn’t what it looks like!” Yes, there is a reason for why I am hugging and comforting my child who just had what looks like a total bratty tantrum. Or why when he does something awful you might just hear me say “one point,” and it might look like a dramatic under-reaction but you don’t know that he is working hard for something and that was a big setback. Usually, if my kid is acting up I’m going to employ specific, strategic responses that have been developed with the assistance of experts and following so many hours of assessments and therapies. It may not look like a reasonable response to you. Trust that I tried it your way at first. No one had better parenting “instincts.” Turns out, I have less use for those native instincts than I expected.

I don’t mean to suggest that there is no use at all for a mother’s intuition, standard edition. I know how high a fever is with a kiss on the forehead. I know when something is wrong. It is the ultimate evolutionary instinct to protect my child above all else. But I also build new instincts. These are stronger. For better or worse, there’s no “because that’s how my parents did it” to fall back on. So, you have to come up with a new way.

My skills in advocating for my son medically and educationally have made me a stronger person.  I do trust my instincts over the experts, now. But my instincts have been reshaped to incorporate the wisdom of highly educated and experienced specialists whose good advice and guidance that have helped him already. It’s been re-shaped by online communities of folks in the same boat. It’s been re-shaped by trying to keep up with cutting edge research. Now, more often than not, I make decisions based on this specialized body of knowledge than instincts. Or at least I do when I’m doing it right and not falling into bad parenting habits and ineffective approaches. So if you too have absolutely no idea what you are doing, it’s ok. It’s not just like riding a bicycle. You adapt and you learn how to best help your child. And that driving love? That is the most intuitive thing in the world.
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