by Shannon Aronin on August 16th, 2015

​The countdown to going back to school is 12 hours away. Except that it's not quite BACK to school for my son as much as it is starting at another school. Just like it has been for the last 3-4 years. I used to joke that my brilliant boy was a pre-school dropout -- he was basically booted from 2 schools and was briefly at a third before kinder started. And then we moved from Austin, Texas to Los Angeles. That year didn't go well.  So when we checked back in with him again last night about the new school, he blew me away with his understanding, his desire for help which I know will drive him, and his bravery. Yes, switching schools until we get it right is frustrating, but he is the one who has to be the new kid again. I'm worried he's just not able to tell me what he's really feeling.

I'm telling myself this year will go better, I need to believe that. He's going to a small, special education school this year. In California it's called a non-public school (NPS). The school districts, when public school just isn’t going to work, contract these quasi-private but independently operated schools.  My baby will ride a school bus this year for the first time. Neither my husband nor I even rode a school bus. I think I'm pretty middle of the road in parenting style, but right now all I want to do is hover.


​So with all of this, I have a hair trigger with school district personnel. I do believe they mean well, and have been generous with services at least, but there was further conflict over the summer to get the tutoring hours he was owed because they could not truly give him FAPE in our opinion. So now we're at the end of summer,  and I need a promise from the school district that they will provide the required services as compensatory hours in the future. Further, we had not heard from the bus company with only a few days until the first day of school.

The Special Education Director is new, and I don't know him that well yet. But I had already had a hard time getting in touch with him (It was the week before school starts to be fair), and I needed him to know that I meant business! So I kind of went off. I assumed it was more of the same. I don't even remember what all I said. I know I didn't cross the line. I ended my little monologue, and for some unknown reason, the words that came out of my mouth, as if I was channeling Katy Perry,  were "and I am not afraid!" 
​It was his turn now. His first response was "Good! I don't want anyone operating from fear." Whoa. I don't know what I was expecting but that wasn't it. We talked for a little while and he seemed... Earnest. I started to soften. 

I didn't agree with him on everything. I was clear that after a phone call I will follow up with an email for documentation; if it's not in writing it didn't happen. This is not necessarily a litigious move because you do need record of what was promised in a meeting for example.

By end of the call I was cautiously optimistic. I said something about offering help, and mentioned wanting to look at a 2e (twice-exceptional) program with the SELPA. He asked if I would represent the district as a member of the community advisory committee (CAC). You could have knocked me over with a feather. We know that the most effective way to recruit a volunteer is simply to ask. I'm just surprised he would want to hear more from me.

My husband said it was brilliant. Instead of forcing my hand and creating situations where it felt like the war path was the only path, he wants to have me work for him and not against him. I'm taking it all under consideration, but it's a start.

by Shannon Aronin on August 10th, 2015

There comes a time in every special needs family’s life when you realize… You have no idea what you are doing and parenting this child is not like parenting other children. The same rules don’t apply. Things you never thought you would do as a parent, like resorting to bribery on a constant basis, are now encouraged by therapists and books as a “token economy.” Things you just expected would be the case based on your child’s age just didn’t happen for him yet, his behaviors are out of control, and it’s causing problems.

Every special needs parent I know will tell you the early days are the worst. Before you have a diagnosis but you know something is wrong. After you have a diagnosis and your head is spinning. You have no tribe yet and you are maybe just beginning to even find online communities you can turn to. You need some practical help, preferably yesterday.

I’m no doctor or therapist. I’m just a mom with three years since my son’s diagnosis under my belt. Every child is different and I make no guarantees that these will work on your kid. But here are ten behavior hacks that have made a big difference for my son.

1. Figure out what he is worried about. Anxiety is a key feature of many emotional outbursts. My son used to cry and scream that he was starving. I assure you he has never missed a meal. One day I figured out that he needed to know when we were going to eat next. Once I explained that we were five minutes from home and he could have a sandwich right away, he stopped.

When I asked my Facebook community what worked for them, Karin Lunsford had a similar experience. Her son was given a dollar as a pretty routine reward to play pinball. Even though he knew it was coming, he would sit there repeating the word dollar. Once she put a dollar in his pocket, even before they got to the pinball machine, he calmed down.

2. Know his limits. The more your child succeeds, the more he will continue to succeed. A premature erosion of self-confidence is pretty much standard-issue with a disability. I’m not suggesting the everybody gets a trophy approach, really I’m not. But if you are going out to dinner and you want your child to behave, pick an atmosphere where he can manage that. Think about sensory match – is your kid better in a quiet environment because he gets over-stimulated? Perhaps he is sensory seeking and if it is too quiet he will fix that problem.

3. Understand that behavior is communication. Kids with autism especially are going to have a hard time getting their point across sometimes. My son has a vocabulary in the 98% but he can’t tell you a story in chronological order. While he can sometimes be very insightful, sometimes he flips out for what seems like no reason at all. Despite the collective opinion of my son’s IEP team this last year to the contrary, behavior isn’t random and it isn’t always about seeking out attention. Generally speaking, there are four main functions of behavior: Sensory seeking, Escapism, Attention Seeking, and seeking access to Tangible materials, or SEAT for short. 

This is a hard one because to an outsider it can look overly permissive and giving in to bad behavior. But in truth this is a very challenging thing. You have to accept the fact that your child is trying to tell you something, and he probably wishes he could do it in a more productive way too. Then your compassion level goes up and you can take on the detective mission. This is what professionals do by the way, so hopefully you are on your way to getting help. It’s that hard. I say start with the simpler behaviors. Once you can figure out why, you are one step closer to giving them what they need. Even if it is attention-seeking, that means your child needs your attention. If you give it to him before he acts out in order to get it then he will act out less, trust you more, and feel less anxious. It’s hard for anyone to be rational when stress is overwhelming.
​4. Always be prepared. Sometimes life means you just aren’t going to be able to provide a calm, routine, predictable environment for your child. I’m super pro electronics. The iPod Touch has been nothing short of a lifesaver. I think I might be a recluse if not for it. It stops the echolalia while I attempt to drive on LA freeways. It keeps him quiet when I have to drag him along for a doctor appointment or there has been a family emergency or I need him to participate in a non-preferred activity. That’s life. Life isn’t perfect. Disability or not, our kids need to learn this as much as anyone else. But you have to help them through it. If your kid is sensitive to noise, maybe some noise cancelling headphones are a good idea while you are schlepping around. Maybe it’s art supplies, or a book on bugs or trains or dinosaurs.  Just have the thing that helps them deal with the occasional speed bump. It’s ok if they need a crutch while they learn to do what may come more easily to others.

5. Celebrate incremental success. There is a phrase that always seems to get attached to IEP goals that I find helpful: with 80% accuracy. Don’t let the perfect be the enemy of the good. Tiger moms, helicopter parents, perfectionists – YOU adapt. Now.

My son pees on the toilet seat. It drives me insane. Before I learned some helpful tips and tricks for tackling behaviors I yelled about this, a lot. Just leaving the seat up would be a welcome change at this point. Something I could never have imagined a lifetime ago. And while yelling, if you do enough of it, likely will work, it has to be one of the least efficient and most taxing ways of getting there, and it is accompanied by the potential for harm. But I’m not perfect either, and I yelled about pee on the toilet seat. Eventually he got it. Mostly.

Now when I go to the bathroom and find pee on the toilet seat, I take a breath. And I ask myself if I think he has successfully NOT left pee on the toilet seat eight out the last ten times he went. If I think he’s succeeding at not peeing on the toilet seat 80% of the time I let it go.

6. Prep work. This summer has been amazing. My kiddo attended basketball, tennis, art & piano. His nanny is a childcare goddess that has kept him moving. He has had a licensed, district provided home instructor. But that can be a hectic schedule. He wants to know, always, when is there time for Minecraft. We took a giant office calendar and we filled it out so that every day he could look and see when his teacher was coming, when the nanny was coming, when his classes were, and any other planned activities. We also talk about new situations and discuss expectations before going in. One clear way to communicate what’s coming is first then statements. First we do this non-preferred activity, then we do this preferred activity.

7.Manage transitions in the least traumatic way possible. Transitions are hard for kids with many different kinds of disabilities. This is a big problem that leads to countless meltdowns. But this is one trick can dramatically alter those situations. Timed warnings, that’s it. Leaving the beach? I give him a 15 or 20 minute heads up. Then I set an alarm for 10 minutes, and let him know. Then five more minutes. Depending on your child, and their age, you might have to fiddle with the length of time you give for warnings that work for your kid. Use your cell phone alarm, that will also take some of the responsibility for ending things off your shoulders because the alarm said we need to move on. Even better if you can tell your child what time you are going to leave before you even get there.

8. Use trigger words. As we have been learning, navigating and eventually successfully implementing this “token economy” technique, we’ve learned that we can motivate the intended response by using trigger words. At first we worked on accepting no for an answer, so that one was easy, NO. Then we began to work on following instructions. Something had to notify him that hey, he had been given an INSTRUCTION and whether or not he followed it was going to affect his points earned towards the reward. He had used yes sir or ma’am in the past for karate instruction so it already was a click word for us. You can use whatever works for your family.

9. Give binary choices. These kids feel like they have very little control over their lives. They can’t even control their own emotions. Find the things that you really don’t care about but that might mean a lot to your kid and let them choose. Don’t overwhelm them, again this is extra hard for a kid with emotional regulation issues, and they still very much need your guidance. Things like asking which of these two clean and appropriate tee shirts would you like to wear, which chore would you like to do first, even what would you like for dinner when you and your spouse can’t decide, this or that. Two choices.

10. Ignore him. That’s right, this is a legitimate technique. One of the most important lessons I have learned from reading parenting books was written in the book The Explosive Child by Ross Greene. Greene states that parents need not attend every argument they are invited to. Learning to pick your battles is pretty much the key to survival. If you want to justify this, apparently the pros call this “extinguishing techniques.” Sometimes giving the behavior attention will increase the behavior. I have no idea when that is versus when you need to meet their need for attention for YOUR child, there is nothing about this that is a perfect science. This is really a corollary philosophy to the good old fashioned time-out; it’s just the absence of positive reinforcement. Sometimes it’s a natural consequence. If my kid speaks to me disrespectfully well then naturally I don’t want to hang out with him or do something nice for him.

We haven’t even gotten our behaviorist yet. But when I started to work with an autism framework, and learned some of these tactics, it changed our lives. Many of these we only figured out this summer and it feels like we have made more progress with my son in three months than the prior three years. This also only scratches the surface. There are so many tricks we can learn and use to help our special needs children to self-regulate their emotions, behave appropriately for life and treat us with a modicum of respect. I want to hear yours. 

Tell me in the comments, what behavior hacks help you to parent your child with special needs?

by Shannon Aronin on July 20th, 2015

​Starting this blog made me really wrestle with issues of privacy. How can I be open and honest and real… if I hold back? I also knew, even without naming or including pictures of my son, I could never tell his story without telling mine. Just like his still little, but growing so fast, almost 8 year old hands still fit into mine. Interlaced, intertwined, forever enmeshed. Someday, soon, he’s going to let go of my hand. He might be older than the other kids when it happens, but eventually he will want to cross the street alone, and I will have to let him go. But our stories, and many of the challenges we share in navigating this crazy world, those are ours.

There are a lot of theories about what causes mental illness in children. There is some solid scientific research that is just beginning to find some connections. Red food dye probably is bad for a kid with ADHD. Many kids with autism have digestive issues, and in concert with research about how gut flora can affect so much in our bodies, this avenue looks promising. Other research has shown that mothers who lived very close to highways when pregnant had significantly higher chances of having a child with autism. Older dads seem to have a higher risk of having kids with mental illness. Eventually though, most of us have to face the elephant in the room: genetics.

Generally, our kids didn’t just pop out crazy, like they were the first in the family. Inherited mental illness can be a bit of a twisted ball of yarn. Many seemingly distinct disorders and syndromes share genetic markers. Your mom may have had depression, but you have anxiety. Your dad may have been bipolar and your son is autistic. Your uncle may have had schizophrenia and you have ADHD.

I’m not ready to out myself and share my particular challenges, but like a lot of people, I see a psychiatrist. If you are a special needs parent, even if you were the mentally healthiest person in the universe before… not so much anymore, right? Did you know that stress levels of autism moms have been shown to mimic the effect of stress under combat? So often we ARE in combat – with the school, various therapists, family and friends that don’t understand, our partners, clueless and  judgey strangers and of course, sometimes, our child. Not you? Ok Mother Theresa.

When I’m under that kind of stress, plus a full-time job that I love but can sometimes mean excessive hours, I take my pills, and I march on. Because… say it with me now special needs parent warriors, this is our mantra… WHAT OTHER CHOICE DO WE REALLY HAVE? When your kid needs you, you find superhuman strength.

Boo goes back to school in one month. This summer though, it has been glorious. The nanny has been perfect, at all times, I couldn’t ask for more other than wishing she would go to school a bit closer to Los Angeles than Vermont and didn’t have to leave. We have a home instruction tutor who gets my son and pushes him academically. He respects his brain and what he can do and it’s amazing. Our local regional center gave him an ASD diagnosis, so although we have to wait a few more months, behavioral help is coming. We found a school, really! I’m nervous, for sure. It’s a “special” school for kids with behavioral problems. The rigidity of it is a little scary. Boo’s reaction to being notified there is a dress code that does not permit character tee shirts was less than fun and I can’t wait for the morning clothing fights to begin. He will be taking a school bus for the first time. But we liked it and ultimately you have to be able to take some leaps of faith. We shall see how it goes, but we are hopeful.

He has been taking basketball, tennis, art and piano. He complains all the time about this, like he didn’t pick the classes. He would spend 24/7 playing Minecraft lately if we allowed it. I have such a love/hate relationship with that game. He will at least continue with piano. The school district is in the middle of his speech assessment and other assessments have been planned for the fall. He has been sleeping better, he has been braver, and stunningly, we are figuring him out better and it has made life with him so, so much better. We are feeling our way around in the dark to discover some basic behavioral concepts that have dramatically cut down arguments. We have had a consistent, but low-key schedule. We have learned how to effectively ease transitions. HE MADE A FRIEND. He hasn’t had as many opportunities as we would like to practice “social skills,” but c’mon, Rome wasn’t built in a day and for the first time in three years of searching, advocating, crying, fighting, researching and most of all loving so deeply I walked around with a heart that felt so heavy sometimes I thought I couldn’t take another step -- I think, maybe, possibly, hopefully, prayerfully, we might just be on the right track.

It appears that the time has come for me to fall apart. I often have been known to do this during short-term and acute crisis. Get through it and then fall apart completely, my own sobbing, panicked, empty meltdown. I have been known to feel similarly after my wedding or a long-term, huge work project ends. I think actors often feel this way when a show ends… what do I do with myself now? Well apparently, the answer is I fell down a rabbit hole. I don’t enjoy the constant struggle, particularly in the last year. I should just be enjoying taking a breath. It’s not like I have rose-colored glasses on. New school or not, we all still have a long way to go. I know it’s coming. But it’s like I can’t stop worrying. I forgot how to simply rest. I might look like I'm resting, but honestly I'm just paralyzed sometimes. Everything is great, except me. Fear not dear reader, this too shall pass. But I wonder, does anyone else get so used to the stress that they are emotionally confused and unsure what to do during the good times? Has anyone else taken the role of warrior so seriously that their identity gets wrapped up in it and they don’t know what to do during peacetime? It’s not that I’m looking forward to the school year and intensive therapies and the IEP meetings. But change is hard, even when the change is good. Just as I figure out how to breathe again, duty will call and it will be a whole new world for us. Fingers crossed I figure out how to celebrate success a bit more and worry a bit less between now and then.

by Shannon Aronin on July 8th, 2015

​My son is on medications. Before I had a child, before I had this child, I too had opinions about how ADHD was so “over-diagnosed” and “over-medicated.” I was wrong.

It seems like every week another article comes out questioning the validity of ADHD and suggests that medication is the wrong way to go and it’s all about diet or poor parenting. Never mind the fact that we can see brain scans showing differences in the ADHD brain. Moms in particular take the heat, but of course every depiction of psychological care start with analyzing the mother-child relationship. And it’s crap. These days I hang out almost exclusively with other special needs families and I see a lot more families withholding treatment from kids who are suffering than I do parents who nonchalantly drug their kids. The decision to medicate your child is not something taken lightly, nor should it be. Also, stimulants are EXPENSIVE! Boo’s medications cost $600+ every month, out-of-pocket. That’s more than many Americans pay for rent. Medication is a gut-wrenching choice, the time spent tweaking the medications to determine the right regimen is grueling, and it is far from being the easy way out.

There is no guarantee that my child will turn out better than your un-medicated child with ADHD. At all. But before you judge me, consider that untreated ADHD in childhood is associated with a host of risk factors and negative life outcomes, including problems at school, work, in relationships, driving records including accidents which are prone to be more serious, eating disorders, trouble with the law, anxiety, depression…  To medicate or not medicate, neither choice is risk-free.

This article, which claims French Kids Don’t Have ADHD, is circulating again on social media. And it’s baloney. More than that, it’s dangerous and hurtful. It’s actually refers to pharmacological treatment as psychological band aids. It questions the validity of the American diagnosis rate of 9% of all children. The CDC got that number based on parent reported cases in a phone survey by the way, hardly a rigorous study and nearly guaranteed to lean high. But taking it at face value, why is that so hard to believe? Autism has risen at an absolutely astonishing rate. My personal opinion is that a confluence of genetics and environmental factors that we have barely scratched the surface of understanding is causing the dramatically increased prevalence of these issues. And the comparison to the rise in autism or other psychiatric disorders is not idle: ADHD, autism, Bipolar Disorder, Depression and Schizophrenia all share the same genetic variations. But please, tell me more about how your naturalist says the problem is all gluten's fault.

There are some common sense dietary measures. Boo doesn’t get caffeine. Sugar is limited. We try to avoid food dyes, particularly red food dye, because the science on that is sufficiently compelling to me and after all, who feels well after lots of food dye? Think about the last children’s birthday party you attended with a technicolor rainbow cake. How did you feel after eating it? Was the color of your next poo a little disturbing?  But ultimately, medication has been proven to be, hands-down, the most effective treatment for ADHD.

So let’s talk about this claim that French kids don’t get ADHD. It’s hogwash. In many areas, there is much America could learn from France, including their approach to most healthcare and social services. But when it comes to psychiatry, they are woefully behind the times and stigma is rampant. For example, they are still using psychoanalysis to treat autism despite the science to the contrary or the example of everyone else that applied behavior analysis is the most effective treatment. This stigma has long-term, devastating consequences. Untreated ADHD leads to a host of other mental health disorders, including substance abuse. That’s interesting because while all these French children are going undiagnosed with ADHD they supposedly don’t have; French men have the EU’s highest cancer death rate, closely linked to excessive alcohol use and smoking.  That’s a pretty profound correlation.

The author of the French Kids post is totally unqualified to make this assertion. Marilyn Wedge has a PhD in social, not clinical psychology. It’s basically a fancy anthropology degree. And she may “publish,” but it’s not peer-reviewed. She’s a shill with an anti-psychiatry agenda. There is about as much reason to trust her opinions on this matter as there is Tom Cruise. Peer reviewed, scientific research has demonstrated that the real rates of ADHD are pretty stable across the world. More peer-reviewed, scientific research has shown that by far stimulant medications are the most effective treatment for ADHD.

MY opinion is equally irrelevant by the way; don’t take my word for it. However, the links I provide are solid sources you can evaluate for yourself. Meanwhile every single one of the links in the French Kids story links back to Psychology Today, not nearly as impressive publication in terms of peer-reviewed publication criteria as you might suspect. Ms. Wedge has three books for sale, A Disease Called Childhood, Suffer the Children: The Case Against Labeling and Medicating, and Pills are Not for Preschoolers. Sure her motives are pure, really. This is a new blog and the first time I am blogging about this issue. I don’t plan for it to be a running theme. I have no advertisers, no books to sell, no relationships with pharmaceutical companies.

Does that mean my first response is always to medicate? NO! I hear stories of pediatricians who spend five minutes with a 4 year old and push Ritalin. What the heck? You should never medicate anyone, much less a child, without significant testing to determine what the problem is. ADHD is far from the only thing that might be wrong and other possible causes should be ruled out. Comprehensive neuropsychological testing is a great place to start. Not only will it help determine a course of treatment, an exhaustive report on how your child learns (which if your child is school age the district will pay for from an independent provider of your choice; this is a legal requirement) is absolutely invaluable in making useful environmental changes such as easing them into transitions, breaking tasks down to their smallest component, various therapies, and finding ways to serve as your child’s pre-frontal cortex until their executive skills functioning catches up. For some families, these modifications work and if the kid isn’t highly symptomatic, great. If you really believe going gluten-free has fixed your child, good for you. Maybe you are in favor of both, no judgement here. The decision to medicate is so hard, and it is a very personal choice.

Not to be an alarmist, but your window to make that choice is actually quite small. If you wait until your kid is failing classes in high school, medications may help but much of the lifelong damage is already done. Similar to the research on pediatric mood disorders, science has theorized (not proven on this count) that early intervention and limiting the exposure to the effects of this brain disease in childhood will reduce the presence or severity of symptoms in adulthood.  What’s more, untreated ADHD undoubtedly leads to many more discipline problems, adversely affecting peer relationships, feelings of anxiety, education and self-esteem. This too has long-term consequences on adult mental health.

The solution to our mental health crisis is not rocket science. Raise awareness, reduce stigma, and increase access to quality care. That’s it. But articles that delegitimize ADHD and suggest Americans are somehow inferior for seeking treatment for our children are dangerous, hurtful, and simply inaccurate. 

by Shannon Aronin on July 5th, 2015

​​​I don't usually think of autism as a blessing. It's not a blessing that my kid doesn’t have friends, is super literal and can’t stop with the echolalia noises that drive me so bananas. It's not a blessing for families with non-verbal kids that they don’t know what’s in their hearts or on their minds or even what hurts when they are in pain. It's not something to be grateful for when it's paired with cognitive impairment. I support research to identify effective treatments and a cure. This is sometimes a controversial stance so I want to make it clear: this is not a post about how autism makes you stronger, and I am not suggesting that we shouldn’t try to fight this disorder.

​My Boo was recently diagnosed with autism spectrum disorder (ASD). I was so deeply relieved. I doubt many parents have ever been so pleased to hear the word autism. Here's why:
1. Unlike the previous diagnosis of social pragmatic communication disorder (SCD), ASD is a label that entitles him to services provided by the State of California that was recommended by the doctor who diagnosed him with SCD – Applied Behavior Analysis (ABA). We think ASD is more accurate, but it’s iffy. It’s just a word though, and he is the same kid when we walked out of the neuropsychologist’s office with a diagnosis of SCD as he was when we walked out of Regional Center with a diagnosis of being “on the spectrum,” as he was before that.

This has brought up an interesting medical ethics question that is more academically interesting when your kid’s life and treatment aren’t hanging in the balance. If a patient is really close to two separate diagnoses, is it more ethical to give them the diagnosis you think is wrong or to give them a diagnosis that precludes access to the very treatment recommended for both disorders?

In the last few years I have come to think about all the mental illnesses. They are real. They are medical. We can see them on brain scans and can test your enzymes to see which psychotropic drugs will metabolize and work best for your body. But it’s not like the difference between cancer and diabetes. These things are more discrete. When you are looking at multiple complex diagnoses, everything must be viewed through different lenses. It’s like needing trifocals for parenting. I am so grateful that help is on the way.
​2. Autism is a word that people have heard. I don’t have to explain it all the time. I feel honest saying it. We fit within a community now of autism families. And despite his various diagnoses, these seem to be our people. These are the ones who get it. The kids on the spectrum who also have ADHD get it a little more. Kids who are gifted and have one or both also really get it. I have yet to meet anyone with the same exact issues who is also gifted. Teachers and psychologists alike are a little fascinated by my Boo. He’s different among the different. He will learn a lot about other kids who are like him but not, and who knows? As much as he talks he might be a help to the kids with speech delays. We’ve already seen other kids help him lower his anxiety and increase his confidence. Whether it is caused by the mood disorder that gives him big, huge feelings or just luck, he is very emotional and compassionate, at least when he can read a situation and understands what someone else is feeling. 
​3. It gives us a parenting framework. I remember since my son was first diagnosed with anything and my mother used to ask what the doctors he was seeing recommended for discipline or how to address the behaviors. They didn’t know. They couldn’t even tell for sure what was wrong. People are sometimes surprised, like how could you miss autism for seven years? I know what autism looks like better than most. I’ve picked it out in other people’s children as early as 6 months old. But it was never clear for him. Now that we know I can focus our reading on the right things. Some people think parenting should be instinctive, that humans don’t need scientific research to understand how to parent their child. Good luck with that if you have a kiddo on the spectrum.

A friend of mine has the first and most inspiring special needs family I have ever met. Her husband basically taught himself how to do ABA before it was as well researched and state provided. Their son has classic autism, and I just couldn’t figure out how the Dad did it. I watched YouTube videos of on discrete trial training, and it seems to be an approach for littler kids. But I kept reading and I started learning more about how token economies (*cough, bribery, cough*) work as a powerful behavior modification tool. So the first week the goal was a point a day for “not arguing.” He earned zero points that week. So back to the drawing board I went and realized that’s still much too big of a goal. What are the things that make up an argument with kids? Not accepting no, being disrespectful, whining, not following instructions… wow, there’s a lot there isn’t there? So we broke it down. We said you get a point when you say “okay” to a “no” from a grown-up. We read a book by Julia Cook called “I Just Don’t Like the Sound of No,” and decided to try to become members of the Say Yes to No Club. I realize that to parents of neurotypical children this might feel a little authoritarian mind control-ish, but trust me when I say it’s what he needs. I didn’t start my journey as a parent thinking that I wanted to raise a “compliant” child. Quite the opposite I expected to raise a child to question authority. But for my square peg that doesn’t seem to be the way to go right now. This week he earned 12 points and got to see the fireworks as his chosen reward. This made me feel brilliant, until the next time I didn’t know what to make of things, so for like 5 minutes.

We’ve learned to give him lists, and the instructions must be broken down to the smallest parts. So “clean your room” is an impossible thing to ask. He literally can’t do it. Learning that it’s not that he WON’T do it has increased my compassion for the problem. If you give him a list, and it says pick up everything on the floor, this too is too much. At this point it’s hard not to be frustrated because no matter how much I read about asynchrony the idea that one can do algebra but not basic tasks is hard to understand in practice. So those tasks have to be broken down even further: first pick up all the Legos, then the crayons, then the action figures, etc. We’ve learned that like it or not, he needs hand-holding and direction; the room might actually get cleaned if someone sits there with him. And when it’s really bad it’s so overwhelming he needs help problem-solving, so we might agree that he gets a 5 minute break for every 25 minutes of work. After we get through to him while he is melting down about something we can fix if he would only hear me out.

We’ve learned that asking him to do something quickly, never mind quickly and carefully, breaks his brain. It causes such a great deal of anxiety he shuts down and can’t do anything. So we try to stop with the “hurry ups,” even if that’s all I want in the world, for him to move faster. We’ve learned that although he is unusually flexible for a kid with his challenges, he still struggles with transitions a great deal but that this is a difficulty he is not aware of so it’s our job to prepare him even if he seems fine. A time warning before he needs to change activities, especially for “non-preferred activities” has helped immensely.

Of course, we slip, on all of these techniques, fail, and then feel crappy. Like all the time. But I’m getting better at it. There is less arguing. There is still so much to learn, but at least now I am looking in the right places. I know what he needs, and it may take a few more months of paperwork and waiting, but now we can get him the right help. His teachers will understand him better. The rest of the world will understand him a little better. Perhaps they will even find the genius in those square peg edges and have just a little more compassion and take a little more pleasure in the things that make him such an awesome kid. I may not be interested in “celebrating autism,” but I am into taking pride in his achievements great and small and acknowledging that autism might not be awesome, but he is. 

by Shannon Aronin on June 21st, 2015

The special needs community often seems to be driven by moms. Us moms, we have support groups, both online and off. We seem to be at the center of advocacy and we’re the ones always talking about it. But in honor of Father’s Day, I would like to give a hand to the dads, and specifically my other half. Parenting a special needs child is both harder and more rewarding than anyone expects when they find out they are expecting. I am so grateful to have a husband who is truly a partner, in fact sometimes I think he is better than me at everything (not that I would admit it!).

1. Patience X 2: All children require patience as they learn. But parents of neurotypical (NT) children have no idea what patience really means. I’m talking gift of the spirit, I can deliberately use some behavior modification technique when right this minute I am trying to remember that I don’t hit my kid level of patience. Patience to listen to conversations about Minecraft until the end of time. Patience for how much longer it takes to do things we once took for granted as simple, like leaving the house. Patience for ourselves as we constantly over or under-estimate what our son can do. 

The reason it takes two people to make a baby is that it really requires two people to raise a baby. Single parents amaze me because they seem to be able to do it all, but the rest of us mere mortals benefit our children a great deal by having the ability to tap out. I don’t expend MY patience if my husband is already handling an issue. In five minutes he may have expended his patience and it will be my turn again. This is a common approach for many families, it’s just that special needs parents need to tap out a lot more often and jump back in more quickly. Tapping out of NT parenting is a little like a baseball pitcher. You threw a good six innings, now go sit down. Tapping out with a special needs child is more like the organized chaos of hockey – on the fly substitutions happening at break-neck speed. 
2. Understanding: My husband can personally relate to some aspects of my son’s challenges better than I can. Being more tuned in to what makes Boo tick can not only makes him kinder, he helps me to understand which makes me kinder too. It’s hard for all of us to understand how this child can code a computer but has difficulty with basic life skills. We’ve recently learned more about why, and that helps, but the asynchrony of being able to code a computer but not bathe or dress himself without assistance and an endless loop of prompting is really frustrating and it feels like you need a PhD sometimes to figure out what IS a reasonable expectation for him. My husband is also able to use this understanding to pick his battles, and talk me out of having more than a few. For example, Boo has fine motor issues. He cannot even stand the idea of trying to learn to tie his shoes. There have been more than one shoe store meltdowns when asked if he wanted to consider laces. This drives me crazy. I have an almost eight year-old and I feel like a failure because I have not even begun to teach shoe tying. My husband on the other hand has pointed out that grown men in today’s world really don’t NEED to learn to tie any shoes. If velcro is a requirement, than Velcro is a requirement. Dress shoes can be slip-on. No big deal. 
3. Who Gives a Hoot? We have to spend so much time analyzing our children. Why did he act out that specific way at that specific moment in that specific place? What happened right before any incident? This all takes a lot of brain space. My husband is the one who realizes, that like picking our battles with our son, there are a very limited number of people’s opinions on which we should waste a single thought. He doesn’t care what other people think and is often less rattled by them as a result. In a world where I often feel the need to explain, he doesn’t. When I worry about what someone thinks of him or of us, he is the one to ask why do you care? Particularly because I’m not, I’m grateful for his laid back attitude about other people’s opinions. 
4. Commitment: Again, all parenting takes commitment. Some NT parents choose to commit bigger and better than everyone else, see Mommy Wars. But special needs parents aren’t giving and giving and giving so their special snowflake can be the best, this is literally what is required of us. If you have ever worried about whether your NT child’s pre-school will help or her get into the right college, well… you won’t find any sympathy here. Special needs parents have an endless number of doctor appointments and therapy appointments and IEP meetings and assessments and and and! With the exception of doctor appointments which we typically divide and conquer, my husband has never missed any of these things ever. I have never filled out a diagnostic questionnaire form without him sitting right next to me, making jokes about how ridiculous the questions are and pouring me a glass of wine. Ugh. I just realized one of our successful marriage “couple rituals” is how we approach filling out the damn paperwork! It is a commitment to my son to be there for all of those things, but it is also a commitment to me. We get through this together. Even if our genes collided to make this extraordinary little person, I  done good picking my baby daddy. 
5. Unity: We have mastered the art of good cop/bad cop. It starts with our son, and we take turns at it. He will even notice if I have had to play bad cop recently and offer me the good cop role. We do it with the school too. If I have been writing the emails and doing all the demanding, and I break because something happens and I just can’t do it anymore he is the one who will puff up his chest and go down to the school and tell the principal we are not sending our son back to school until this is fixed. The change in tone coming from the quieter one is often what is most heard. 
​Happy Fathers’ Day to the best husband a girl could ask for, and a happy fathers’ day to all the special needs dads out there who are determined to make their kids’ lives as good as they can be no matter what it takes or the sacrifices called for.

by Shannon Aronin on June 9th, 2015

​Last week my Boo got rejected by a private school for special needs. They felt they couldn’t handle his behaviors, but made sure to tell me how brilliant he was. I was crushed. I even started writing this pity party of a blog post on rejection. But when God closes a door…

Today we went to check out another non-public school with the district. It’s not terrible for what it is, but I just can’t do it. “Quiet rooms,” occasionally kids need to be restrained, and a bit of difficulty articulating their approach. Sat on it for several hours and the husband and I have reached a decision – NO. There has to be a better way.

So now what? We appear to be out of options, public, private doesn’t matter. What do you do when there is no appropriate placement? Well, they are going to have to make one. It’s going to take a little longer, and he won’t start at the same time because we hit the end of the year and there is no more time for IEP meetings. But we are going to work with the District to create a super special plan just for my boy.

The thing is that’s still not quite right. Everyone who works with him knows academics are not our biggest priority right now. I’m not willing to make it a zero priority either however. It also has a big effect on his behavior. So next year if we get a personal licensed teacher/BCBA, Speech, OT, Counselling all at school, plus social skills training provided by the school, he would get to be a part of his grade level class for all the non-academic stuff. His lessons would be with a 1:1 teacher on campus. This is all still the genesis of an idea, but initial feedback from the district staff member I spoke with about it, as we bounced ideas together, was good.

That’s still not enough. We also want him to have true peers to learn with. So now what? Well, I am going to propose that the SELPA (Special Education Local Plan Area, fourteen school districts pool resources for special education) form a pilot program for 2e (twice-exceptional, gifted & learning disabled/other mental illness) learners.  The need is there. We can start small with one class; we only need four kids to start. We have national experts locally. I’m not even sure how to do this yet, but I know that it will involve presenting to the entire group of school superintendents. I know it will take at LEAST a year to get it fully set up. I know that initial feedback on the idea is positive. The funny thing is I have a lifelong dream of starting a school. This isn’t what I pictured, but it is what is needed. I’ve never shied away from changing the world before, and I see no reason to start now!

I’m envisioning a 4:1 ratio, mixed age class. All teachers and aides would have BCBAs. They have a BCBA who works with them present at all times including lunch and recess and gym. Significant ABA (applied behavior analysis) behavior modification, but you would leverage their brainiac interests as tools. It would have to provide significant opportunity for movement and creativity and student driven learning. Plus all the pull out services and a real social skills training program on site. We can base this on other successful models nationally. That’s the extremely basic sketch and I want it to be pretty well grounded in research on what works for this population. I am so frightened. I don’t know how to do this. What if I am biting off more than I can chew? What if I fail?

On the other hand, the more important and magical question is, what if I don’t? Let’s do this!

by Shannon Aronin on June 2nd, 2015

1. Other Special Needs Parents
Sadly, these days it seems you can’t throw a stick without hitting another family affected by a child with special needs. The increase in autism and ADHD are the biggest culprits but there are a lot more kids with issues out there than there were when I was a kid. Yes, sometimes people stare, or make a variety or rude or bizarre comments. But with so many special needs children out there, eventually you start to find your village. And what a village it is!

Special needs parents are without a doubt the most amazing group of people you could ever meet. Let me be clear, none of us are heroes, and none of us would choose for our children to have disabilities. No, the real magic is that the strength special needs parenting takes makes you better. It’s not that God only gives you what you can handle, it’s that having a special needs child is like having a personal trainer to strengthen your shoulders and carry your cross.

So now you have these Hulk like shoulders to carry problems, and you see someone else who hasn’t yet been to the gym much less met your personal trainer. Are you going to let them keep floundering? NO! And another special needs parent is just as unlikely to leave you in the lurches. This is a ready-made community that understands meltdowns and doesn’t assume you are a bad parent when they happen. These are people who understand the complete and utter exhaustion special education creates. These are the people who get it.

2. You are MORE grateful, not less
Maybe it’s my Catholic upbringing (we do like guilt), but it could always be worse. That’s not to say your problems aren’t important or even devastating. But how big of a deal is a tough IEP meeting when someone else’s child didn’t come home at all today? How bad is that meltdown when someone else’s child had chemo today?

The whole experience gives you better perspective and a much better ability to identify first world problems. I’m sorry your neurotypical child didn’t get placed with the teacher you want. Neither did mine, I have to see her all year at IEPs, and he has been denied services because mental health professionals needed the DSM-5 to be novel. Instead I’m going to remember that it could always be worse. And then I’m going to stare down the neurotypical kid’s mom until she realizes she just said something stupid.

3. You laugh more
Funny thing about being tested on the daily is you learn that you MUST laugh in order to survive. Sometimes that laughter may seem inappropriate. Sometimes it’s nervous laughter. I think we need a new category -- survival laughter. Survival laughter is when you see a situation so absurd or ridiculous that you literally must laugh or cry. For example, there is poop on the walls. That’s either really funny or tragic. But if you cry, you might fall down into a rabbit hole of depression and spiral out of control. So for the love of all that is holy, laugh, please laugh. And you know what? It’s ok to laugh about your child’s disability. Not at them, not for being different, but sometimes literal interpretations are hysterical. Sometimes your spouse or you have a truly hysterical reaction to a head shaking moment. Sometimes a school official says something so off base about your kid you ask, out loud, “Are you kidding me?” and start laughing at them. Did I mention that a lot of this laughter might be deemed inappropriate?

4. You are so very human
When you are lucky enough to get a break, you will skip gleefully away for a few minutes until you are racked with guilt for being happy to be away. You will yell at your child for something they cannot control. In our case this is the hardest thing for me because even with test results showing me exactly what is broken in Boo’s brain and technically understanding some of the things he can’t do, it’s still maddening. The level of permanent cognitive dissonance it takes to raise a child who can do algebra but can’t dress themselves without assistance can be mind melting. It is, and I imagine will continue to be, very hard to remain patient in the face of dramatic asynchrony. At any given time I have to figure out what diagnosis I am working with in that moment or is he just being 7? The challenge with diagnosing mental illness in children is that mental illness so closely resembles childhood. With mine I then have to determine his mental age right that moment. Usually I am looking at 3, 7, 13 or 30.

You don’t always bond with other special needs parents, laugh more, or be more grateful. Sometimes you suck, because that is the human condition. You are no more perfect than any other parent and yet it is easy to feel like our mistakes are somehow worse, amplified and magnified. They aren’t. They are only the mark of your humanity. You aren’t the perfect mother. It’s ok, the perfect mother is a judgey bitch, you don’t want to be her anyway. And the perfect mother never had a child with special needs either.

by Shannon Aronin on May 28th, 2015

When you think of the challenges of having a special needs child, you probably think caring for the child is the hardest part. It’s not. Not by a long shot. It’s other people; people at the grocery store, family, and teachers and school administrators are people who are more frustrating to deal with than my child.
 
You might imagine that the opposition, disobedience, or as schools these days like to call it “non-compliance” is the hardest part. It’s not. Isn’t that kind of a creepy way to put it anyway? Your Boo wouldn’t “comply” today. My answer is always sorry, let me know if you figure out how to fix that, mmkay?
 
But there’s something that special needs parents give up that feels downright violating. You want help for your child? Say goodbye to even the slightest pretense of privacy. First there’s the forms. Forms for school assessments, forms for independent assessments, forms forms forms! These tend to be no less than a dozen pages and there are usually several. We are talking rating scales with hundreds of questions you, and your child’s teacher, fill out endorsing mental health statements from never to always. They include essay questions. Not only do they ask how old your child was when he first looked at you (seriously. Agpar scores from birth, when they sat up, crawled, walked, talked, rolled over, started solids... So glad someone made me keep a baby book!) you have to give detailed accounts of your own medical and mental health history. This information, including my pregnancy complications in excruciating detail, winds up in assessment reports. Assessment reports get shared with 15 of your closest friends (actually fourteen people you tolerate and usually one you hate) on the child’s IEP team at school.
 
For the uninitiated, first, stop, take a second to be grateful if you do not know what an IEP is. An IEP is an individualized education plan. It is developed supposedly collaboratively by parents, teachers, administrators, therapists, doctors, nurses and anyone else you deem useful. You can call an IEP meeting anytime you please. If you think the janitor would help, you can request his presence. The IEP is a legal document and IEP meetings, which are both intimidating and emotional, are business meetings. This is a negotiation, but you may not have received the memo and accidentally thought this was actually a collaborative process of everyone working together to meet your child’s needs. The accommodations and services outlined in an IEP are a civil right and the school is breaking the law every time they violate it.
 
So now everyone knows all this about you. Then there is the fact that, if you are blessed as we are to have a child who is verbal (as opposed to many children with autism who do not speak), said child talks. To EVERYONE. He spends time with therapists and psychologists and neuropsychologists and... he is mentally ill. He has no filter. So while it is essential to run a household mostly free of any secrets or private family information, your dirty laundry is already all over town. His misinterpretation of events can lead to him saying terrible things, like I didn’t eat dinner or breakfast. To shrinks. He’s never missed a meal in his life. Deep breath, ok, whatever it takes to help my child right?
 
And then come the people into your home. In home school instructors, behaviorists, more psychologists... So, even if you are a messy family, you start coping with having company every day. But come on, I work 70 hours a week often, and my husband does too. So a lot of stuff gets shoved into bedrooms.

Now, imagine if a teacher came into your home, completely mishandled your child’s needs, starting traipsing through these messy bedrooms, and when she couldn’t find what she was looking for had to eventually be forbidden from digging through your trash with your child to find something super unimportant. This professional is here for 1 hour/day, and this is supposed to teach a child with ADHD, that the adult just started working with, to take care of his things. So that happened. Are you kidding me?
 
In the age of social media we have all become open books; I know I have. Being a special needs parent though has a way of making me crave privacy like never before. Writing this blog is therapeutic, but you’ll notice there are no pictures of messy rooms. And all of this is exhausting because on top of a full time job, you are now a human resources staff at home.
 
Special needs parents seem to be universally tired. Or weary. But it’s often not for the reasons you expect.

by Shannon Aronin on May 25th, 2015

Hello World. I’ve been wanting, nay needing, to write this blog for a few years now. But I couldn’t. I worried about the privacy of the heart of our family story, my 7 year old son. So there will be no images of him on this blog, and I will not be including his name. My son, Boo, Boy Wonder, Sunshine, and I’m sure other monikers will come up along the way -- You will know who I’m talking about. Occasionally I may write about other stuff too -- adjusting to Los Angeles, disability rights, being a mom with a career, things that inspire me, and things that move me for example.

Now, I have something to tell you. Immediate family, close friends, and a particular circle of moms who hold me up, along with the best husband in the world, know. I have talked about it plenty... just not in places like my own Facebook wall. There have been little hints, often from well-meaning loved ones who didn’t know how we’ve guarded this... secret. My son has a disability. He has had symptoms of mental illness pretty much since he was born, but it only became obvious that something was really wrong when he was 5. Because of family history and a strong feeling that something wasn’t right, I was pretty sure mental illness was already ingrained. I just thought we would have 10 or 15 years before it was critical to address it. We had already been doing play therapy (utterly useless) but it still seemed like something we could parent our way out of. But remember, remember the 5th of November 2012, for that was the day we knew real help was in order. And a story for another day.

This blog is about our family’s journey through a complex maze of coping, therapies, doctors, diagnoses, and OMG special ed and the accompanying grey hairs and hair pulling that comes with that mess. Boy Wonder has had several diagnoses, and they are probably a moving target. He’s a complex kid and I don’t know if it will ever feel like we have it all figured out. But having just completed a new battery of neuropsychological testing I’m going to share what his current challenges are. My son has ADHD and something new called Social Pragmatic Communication Disorder. Social Communication Disorder (SCD) is a close cousin of autism, my husband described it as “one exit off the spectrum.”

Just a few years ago, before the publication of the DSM 5, SCD was considered autism. Here’s the kicker. The recommended treatment is Applied Behavior Analysis (ABA - an intensive in home therapy that is the primary evidenced-based treatment for autism). But now he has this new-fangled diagnosis that may preclude access to the recommended treatment. SCD is basically like being half autistic. It is a developmental delay that interferes with daily living, makes it very hard to have friends, causes an extraordinary amount of defiance, and is emotionally draining for all involved, especially my son. At 7 years old he is full of fear and anxiety.

The name of this blog came about when my cousin, who is working towards a PhD in psychology, and I were discussing his doctor’s analogy that he has this giant engine and itty bitty bicycle brakes. She explained that this complementary idea, if you aren’t moving forward then you are falling behind, is sometimes called the Red Queen Hypothesis. It comes from Alice in Wonderland.
    “Now, here, you see, it takes all the running you can do, to keep in the same place."

Despite being unable to reliably dress himself, or do many daily living tasks that would be age appropriate for a neurotypical child, Boy Wonder is also brilliant. Like within ten minutes of meeting him people often call him Sheldon (from the Big Bang Theory). His math and vocabulary abilities are off the chart. He is a pretty good coder in Scratch and is obsessed with Minecraft. He watches Planet Earth and Bill Nye, and we read bedtime stories about history. We hope that this will make it easier to fix his brain while he’s still so little if we can just find the right interventions for him. I worry. A lot. Am I supposed to save for college or lawyers? Will he grow up to have a normal life as a nerdy engineer, ideally with a wife with the patience of a saint? Will he be a professor who needs to live in a group home? Am I in time to fix him? And worst of all, the ten-fold guilt all moms experience, what did I do wrong to cause this?

We are also temporarily homeschooling under duress as we had to pull him from public school in late April when the school broke his IEP three times in one day. This was after a looooooooong school year of one battle after another. On top of my full-time and rather demanding job as a government grant writer, I spent an average of twenty hours a week dealing with special ed stuff. This week the district will begin sending a licensed teacher to our house daily for in home instruction and I cannot wait. We are praying and crossing our fingers that he gets into a small private school designed for kids like him that the school district will pay for. We are still trying to figure out summer plans as we don’t know if he will begin classes there over the summer or if he will be in the coding class for 4th through 6th graders we fought like hell to get him into even though he is only completing first grade. If we managed to add ABA + some exercise, in addition to the in home instruction teacher for extended school year services, that would be good too. The only problem is that we don’t know which option will work yet. And, there appears to be NOTHING available for mid July through mid August. Thank God my husband and I have flexible work situations and work from home quite a lot.

So follow me through the looking glass. Drink this and you will grow into a giant, a little scary but empowering. Who would dare take you on? Special Needs Mamas and Papas drink the grow big potion. Other times you drink the wrong potion and become so small you feel invisible. And that’s ok too. If we all pile together we can still be big enough as a community to take on giants.