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.
Author of accompanying image text unknown. Please comment
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by Shannon Aronin on December 17th, 2015

​Every Christmas I make a Santa video for our son from Portable North Pole. This is one of my favorite parts of Christmas. It connects with your Facebook to pull pictures and asks you very specific questions about your child and the year they've had. Then you get this awesome personalized video message from Santa. We then use Chromecast to show it to him on the big screen. For those trying to extend the magic just a little longer, it's quite convincing. It takes 5 minutes. Add the Official NORAD Santa Tracker on Christmas Eve and bam! You have another year of Santa! 

So every year the video asks if Boo was on the naughty, nice or needs to try harder lists. In the past, he was always on the "come on you got this buddy, but try just a little bit harder" list, I think one year he even made the naughty list. Temporarily before I redid the video & showed it to him, I'm not a monster!

But this year, as I approached this pleasant holiday task, it dawned on me that my Boo had legitimately earned a spot on the nice list. He has really put in effort this year.

So in the spirit of the Twelve Days of Christmas, here are twelve reasons my son made the Nice List this year:

1. I'm proud my Boo was courageous about moving to California, starting a new school, and being brave when it just didn't work, and he had to start at another new school.

2. I'm proud of him for embracing his specialized non public school and working hard there to learn the social skills he needs. I'm relieved to see he is self aware enough to do the work and accept the help.

3, I'm proud that he withstood all the assessments that had to be done to get him here. He has been so accepting as we have moved from one specialist to the next, not to mention different sitters and just generally having people come and go.

4. I'm grateful he is so cooperative but opinionated about his medications. He takes the pills like a champ, trusts us, appreciates the help, and is rather precise in describing how a medication change is affecting him.

5. I'm grateful he is doing so well that for the first time in 3 years we are working towards cutting his medications.

6. I'm proud of the self advocate he has become. While compliance is an important skill that he needs to learn a modicum of, I'm really glad he dug his heels in when a new bus driver wanted him to get in without a car seat. I'm glad he knew enough to be mad when he had trouble accessing his medication. He will always be able to put up a fight if he needs to.

7. Boo has always had a lion sized heart. Not great at perspective taking, but once a situation is explained to him you can't find a kinder soul. This year we watched him make actual friends and repeatedly show compassion for other people's troubles. He has learned to be a generous advocate for others as well.

8. I'm inspired by his optimism. No matter what he has been through, the kid is a trooper. All the professionals ask him routinely how things are going. He ALWAYS says Good! And he sincerely means it. He never lets having autism or ADHD get him down. He loves his family, his dogs, his school, his friends, his toys, his theme song is literally "Everything is Awesome." They say resiliency is a huge predictor of success. I predict my boy will be hugely successful.

9. I'm delighted by his curiosity. I'm often taken off guard by the questions. He has a lot of them, but he is so eager to understand the world. And he's not afraid to push to get answers to big, meaningful questions.

10, My son sets an example of how to live life to the fullest. He has enriched my life with his unbridled joy and rose colored glasses. He literally doesn't care what anyone thinks. While this has its downsides, he actively chooses to be different among the different solely for the sake of being different. Sometimes I may wish he would fit in just a little, but that's not who he is.

11. I love watching him pursue new interests. I'm hopeful that we might have seen Minecraft peak and I think he's between obsessions right now. I'm really pulling for the piano to take root next.

12. He talks to me! I mean really talks to me. I think we have built a stronger foundation for our relationship this year. I think I might have a kid who is willing to talk to me about stuff going on in his life in the years ahead. The one caveat being he has to remember to tell me. Maybe  we will work on his memory this year.

So congrats to my boy, I'm sure Santa will be very good to him this year!

by Shannon Aronin on December 1st, 2015

​My boy is 8, and he is super verbal. He has a vocabulary that is in the 98%. The first thing people notice about him is that he is very smart.  I have watched total strangers as their jaw hits the floor and they are comparing him to Sheldon on the Big Bang Theory within 10 minutes. But we know that because of his attention troubles, the big feelings that go with a mood disorder and the communication struggles of autism, he has trouble applying that big vocabulary. Despite all the words he knows and all the words he can read and all the things he can imagine, I am still often left feeling like I am grasping for straws when trying to figure out WHY he did something, or in therapeutic terms, what is the function of his behavior.

One big challenge is echolalia. My husband is better at tuning it out. But I can’t take it. Some of my worst failures as a mother have involved me losing it over his random and repetitive noises. It tweaks my brain and I swear I can feel smoke coming out of my ears. He knows that this is the thing I cannot handle. He knows when he does it when I am driving it is very dangerous. And I know he can’t always help it. For the most part we’ve put it in the same category as other private things, something you have to go to your room to do by yourself if you need to do that.

He does very little of this at school or in front of the countless professionals who have tested him over the last three years. So when I express that this is a BIG problem for me, they are very confused. They may have caught a peak at it, but not really. I hate these little snippets of nonsense noises so much that by trying so hard to tune it out I rarely even notice when he is hooked on one syllable, or that one sound has risen in frequency. Thankfully my husband is more observant of this.

Recently the husband and I had an incredible opportunity to visit Universal Studios Hollywood for a “Date Day.” The tickets were cheap, the park stayed open late and we waited in few lines. The new sitter was doing great. It was a great day. My son would not have been able to handle this theme park very well yet, so it was a fun grown-up outing.

At one point, we pulled over to look at the park map. He suddenly looked up, like a dog catching a whiff of steak, a certain optimism in something as simple as lifting your head. He said, “Did you hear that? Coming from the loudspeakers? It’s the same noise Boo makes.  Be-do, be-do, be-do…” And for the first time I realized he had been saying be-do not exclusively, but a lot, for probably more than a year. If you had asked me to describe his most common echolalia noise I couldn’t. But this was common, and the noise coming out of the loudspeakers sounded so eerily like him.

Now we were on a mission – find that noise. We find a park staff member and I told him this was going to sound crazy, and we told him a little about our son. And we asked him what that noise was. MINIONS. That’s their language.

So minions, who have become so huge with the Despicable Me movies and just had a movie out called Minions, have a language made up of the sound my son has made, driving me insane, for more than a year, and I didn’t know?! So I cried in front of this unsuspecting theme park employee. I was happy, because this noise had a root other than the folds of Boo’s own brain.  And I was sad because we totally missed it. Later I asked him if that’s where he got it and he practically rolled his eyes with an “of course Mom. You didn’t think I was crazy, right?”
So here I am, alert as I can possibly be, and I had no idea. Makes me wonder how many other things I just miss. But that’s the thing. We are only human. Because special needs parents are hyper vigilant on more than one front usually, it seems we are surprised by the limitations of our humanity.

If you are a special needs parent, what’s the thing you can’t believe you missed for so long? 

by Shannon Aronin on November 1st, 2015

​I don’t feel well. My list of medications and disorders is very long. Most of them have clinically significant diagnostic criteria like bloodwork or imaging results; elevated white blood cells for example are hard to fake and impossible to control. Without boring you, I will say that what most of my conditions have in common is that they are exacerbated by stress. And I am not alone. Research has shown a connection between chronic stress and health outcomes in parents of children with intellectual or developmental disabilities.                                   

My to-do lists are long and I am tired. Between my son and myself I can only handle so many doctors or various therapy sessions at one time. I am always hearing how important “self-care” is, but I can barely make time to go to doctors in order of urgency as time allows, bonus if I make it in without re-scheduling more than twice. My fight or flight responses are high. I need to better manage stress. But yoga and massages are expensive and their effects seem so fleeting. Relaxing just seems like so much work. Again, I am not alone. One study found that “more than 30% of the mothers raising children with autism spectrum disorder reported moderate to severe depressive symptoms when their children were 9 months old. That rate compared to 21% of mothers raising children with other disabilities and slightly more than 16% of mothers with typically developing children.” 

I was recently talking to a mom friend about some horrible news story of massive neglect of very young children. It was a single mom with five kids. The common refrain was that “she should have asked for help.” Very different situations, but it made us wonder -- from whom? Is there a line of helpers in the wings I don’t know about? It DOES take a village. Unfortunately, we, collectively, burned that sucker down. I’m a pretty good mom. (My son’s counselor told me he talks about me as if I were a goddess, her words, not mine. No one is that complimentary of their mother in therapy, ask Freud.) But I’m not Mother Theresa. I understand the feeling of just not being able to go on, or what it’s like to walk away from your kid because you are so angry you need to have him out of sight… and he follows you.

I wish I could just take breaks with my husband. I need more than dinner and a movie, although it’s a start. Date night feels like a tease for what I need. If I could just have a couple nights a few times a year away with my husband that would help. But it’s not really possible. Our situation makes it more difficult, and more nerve-wracking, to “just get a sitter.” After our last real break together last March, my batteries were recharged and I was the mom I want to be for a solid couple of MONTHS. I think if I had four weekends off with my husband a year, I would be a lot closer to saint status.

I wish we could live closer to friends and family and had more help. But it’s more than distance from the places we grew up. And we are not alone. Most special needs families feel isolated. Story after story of people feeling unwelcomed, unwanted and a nuisance to friends, family and even their faith community. People have told me stories where loved ones did not want their child at family events, stopped including them, where their child has outright been referred to as a burden. Almost all the parents I talk to have had relatives suggest that maybe the kids will “grow out of it.” Families like ours are excluded from many things lest the child’s behavior inconvenience anyone. And when the child is symptomatic of their actual disability, their extended family and friends look away and wonder why we can’t all “just control our kids.”

In general, people don’t know how to respond well to mental health issues. In 2013, Larry Lake wrote one of the most poignant things ever published on the internet, “Comfort Food: No one brings dinner when your daughter is an addict.” I know common wisdom is not to expect anything from others. Every special needs parent I know is lonely and very few have more than a threadbare support system. We're all supposed to be these independent islands, asking for help is an imposition.

Part of it is that the chronic nature of mental illness and developmental disabilities makes it more difficult to discern when to jump in, but a lot of it is fear. When I talk to my tribe of special needs parents, the theme of the shared experience of badly needing help is fear. Our families and friends are afraid. I understand you’re scared – scared of administering medications, scared you aren’t equipped to handle a meltdown, scared the child won’t do what you tell him. We’re scared of those things too. Here’s a straw – Suck. It. Up.

I’m addressing the friends, family and loved ones of all special needs families, so pretty much everyone. Respite is a short period of rest or relief from something difficult. Raising a child with any disability is really hard. The longer you go without relief, the harder it gets. The harder it gets, the less effective we are as parents. Every single one of you reading this has a friend or family member with a disability that could use a helping hand. Maybe they don’t need two nights off, maybe they really would cry with gratitude if you just watched the kid while he was asleep for a late date. Maybe they really need a nap. Or a casserole.

Special needs parents aren't superheroes that God chose because they are perfectly patient souls. They are just people putting one foot in front of the other. Because we are parents, and we have the love only a parent can have that sees past the imperfections. So, what other choice is there? When you think "I could never do that," I promise you that you could. If you had to. I’m asking you, on behalf of all special needs families, lend a hand because you choose to. I nominate YOU to take a concrete action to help a family with a child with special needs.

Special needs parents, what is the kindest break someone has given you that allowed you to take care of yourself? To everyone else, especially during this season of gratitude and giving we are about to enter, what can YOU pledge to do to help lighten the load, to be a part of rebuilding the village?