What You Didn't See

 "Why fit in when you were born to stand out?" Dr. Suess 

To the woman who turned and stared at my son at the zoo,

  I know, I know. Open letters on the internet are so overdone. Nevertheless, I couldn't let this one go. You are just one of many, but you are the most recent. We were near the zoo exit when you witnessed my eight-year-old son have a meltdown. 

Your back was turned when it started. I guess you were waiting for your food as we were near the stands. You spun around when you heard the screaming. Sure, that's a reasonable, knee-jerk reaction. When you see the source of the screaming is a struggling child, when you see a mother struggling with her child, you could politely look away and mind your own business. Your other option is to offer a sympathetic smile and/or encouraging word. Those are the only two acceptable options I can think of.

You chose neither. You stared. No, I'm sorry, that's not accurate. You glared - a full-on, mouth opened, eyes narrowed, intense, shaming glare. You gaped at my son like he was one of the wild animals on display. Your glare was meant for me, too. Your judgement was written all over your face.

I could see the scene from your perspective - I know what you saw. You saw a mother who couldn't control her child. You saw a bratty big kid throwing a fit over ice cream. You saw a kid who was "too old to be acting like that." You saw a child who needed a firm hand and a harsh warning rather than help coping and gentle understanding.

You stared hard but you stared blindly. You saw wrong.

I know what you didn't see.

You didn't see the meticulous preparation that went into that seemingly simple zoo trip - and I don't mean just packing a backpack. With a neurodiverse child you can't just pack up and go. You need to show visuals and clearly outline expectations. You have to be hypervigilant in case of elopement or impulsivity. You have to have a backup plan and an escape plan in case it all gets to be too much. 

You'll silently but joyously celebrate every second of success, because you remember the days before diagnosis and in home therapy when you couldn't safely leave the house with your child. 

Yet, those things are not the biggest obstacle when it comes to outings with my child. The biggest difficulty we face as a special needs family is people like you.

I know what you didn't see.

You didn't see my son's autism or his ADHD because these are invisible disabilities, which left me to wonder - would you stare at a child in a wheelchair? Maybe you are the type of person who would do that, but I'll give you the benefit of the doubt and assume you're not. I truly hope you're not. The point is if you wouldn't stare at a child (or adult, for that matter) with a visible disability, you shouldn't stare at a child with an invisible disability. How would you know? How about this? Don't stare. Period. Unless you're looking at the animals at the zoo, but when we're talking about people going about their day, I really can't fathom a situation in which it's appropriate to stare. If your life is so mundane that you feel an insatiable need to stare at people, do yourself and the rest of us a favor and stay home watching reality television. 

You didn't see my son's autism, but more importantly, you didn't see him. You didn't see his excitement for the zoo or his voracious love of animals. You didn't see him defeat his anxiety to leave the house. You didn't see him carefully studying the map with his beautiful brain and successfully guiding us where we wanted to go. You didn't see him saying "hi" to the birds and imitating their unique sounds. You didn't see his determination to find the wolves or his bravery crossing the high bridge even though he's afraid of heights. You didn't see how he made sure to patiently navigate me to the elephants even though he was so anxious to see the wolves, because he knows how much I like the elephant exhibit. You didn't see him stoically navigate his disappointment when we finally reached the wolves and they weren't out. You didn't see him transition to the next animal. You didn't see him share the map with his brother. You didn't hear him laugh at the antics of the monkeys. You didn't see him handle the crowds, managing his anxiety and the sensory stimuli. 

Where there was a day full of successes, you, in your ignorance, saw only failure. You saw a failing parent and a failing child at the end of a long, hot, successful day.

You didn't see him grapple with another (small, in our eyes) disappointment when the stand was out of his favorite ice cream. You didn't hear what he heard when I told him we'd check other stands we passed to see if they had it. He expected something that didn't happen, and for a person with autism this can be the lynchpin. Perhaps to you or me not seeing wolves or the stand not having a particular ice cream bar is not a big deal. Allow me to open your eyes a bit. An individual with autism often relies on knowing what to expect and what's coming next. For my son, even a small change in plans or shift in expectations can dysregulate him. Therapy helps and he works hard at it, but he still struggles. You saw a tantrum when what you were really watching was a meltdown.

You didn't see my son's autism, but more importantly, you didn't see him. Honestly, I feel sorry for you. Your world must be very small. You stare but you are blind - blind to neurodiversity and difference. You're missing out on getting to know the outliers who have struggles, victories, and entire lives outside the periphery of your narrow vision. 

Let's replace assumptions with tolerance. Let's replace ignorance with knowledge. Let's replace judgement with compassion. Let's open our eyes and look beyond ourselves.

I feel sorry for you.

There's so much you didn't see.

To the Parents of the Classmates Who Didn't Give Up On My Son This School Year

Dear Parents,

           

In the daily grind of schedules and snow pants, I’ve neglected to acknowledge my appreciation for you and your family – namely, your sweet, amazing child. 

 Let’s start with you. Before I first dropped my child at your house for a playdate I informed you that my son lives with moderate autism. I hate having this conversation, not because I have any shame surrounding his diagnosis, but because it sounds like I’m giving a warning, when really I’m just highlighting what my son needs to be set up for success with peers, and potential pitfalls I can predict. But if I’m being honest, we didn’t really know each other. We were moms with kids the same age in the same class. We’ve come a long way when it comes to stigma, but the reality is, not everyone is comfortable with special needs. You seemed like a mom I could really get along with, but how could I be sure you wouldn’t have reservations about hosting a child with unique needs, with whom you were unfamiliar? If you had reservations, you didn’t show it. On the contrary, you put my mind at ease, assuring me you’d let me know if any snafus popped up. 


I appreciate your openness, acceptance. Parenting a child with unique needs is often isolating. It can feel a lot like living on an island. Finding someone willing to reach across the water is invaluable. There’s someone else I appreciate. Here’s to your child.

            
You see, my son transitioned (transition – a four letter word to many on the spectrum) from a special-needs preschool class to a mainstream kindergarten. His IEP team proved amazing, but we were nervous about how he’d relate to his peers. We had the same fears most parents face. Would he make a friend? Would he be lonely at recess? Would he get bullied? I remember relating to Julia Roberts’s character in the movie, Wonder, when she watches he son, Auggie walk into the school building and whispers, “Please God make the kids be nice to him”.

 Our concerns were amplified by E’s social anxiety and difficulty reading social cues and communicating verbally. Selective mutism was suggested, as E spoke to teachers and aides but tended to freeze with peers. This looks like flat affect, and a frozen, staring face. Often, he won’t respond when a peer says “hi” or asks to play. When he sees peers playing together, he wanders around them waiting for them to invite him to play. Despite role play, he struggles to verbalize his desire to be included. My biggest prayer wasn’t about reading or math. I prayed that God would send him a real friend to make his school days more comfortable.

           
God gave more than I asked. He gave E. your child. When we ask E. who he played with at recess, instead of hanging his head and saying “no one” like he did in the beginning, he mentions your child’s name with a grin. When E. struggles to transition back into the school week after a weekend or longer break, we remind him that he’ll reunite with your child. That helps. Your child gives him something to look forward to, someone to comfort him when he gets homesick.

Your child was okay with taking the lead, which my child needs. Your child not only asked mine to play, but they were undeterred when E. didn’t respond to their invitations and greetings. Instead of (understandably) running off and finding a more receptive playmate your child persisted, somehow recognizing that my son’s companionship was worth the extra effort. Your child kept asking, kept greeting, and kept inviting. 

I remember the ice cream social during the fall of first grade. E. clung to me, overwhelmed by the excited voices bouncing off the cement walls of the cafeteria and the lines of people. To be honest, I was a bit overwhelmed myself, though I didn’t show it. I saw you and your child. We all exchanged greetings. E. was overloaded and didn’t say “hi” to your child, even with prompting. He remained glued to me even when your kids asked him to come outside and play on the playground. E. tugged on me to go with him, but I was in line for his coveted ice cream ticket. Your kids ran outside.

Moments later, they were back. I watched in grateful amazement, as your child amended, “E., do you want to play with us?” to “Come on, E., let’s go play.” I watched your children gently but firmly take my child’s hand and lead him outside. By the time I made it outside the kids were chasing each other and rolling down the hill. E. was sweaty and laughing. He’d forgotten about me, and more amazingly, he’d forgotten about his ice cream melting in my hand. I’ve never been so happy to have sticky vanilla running down my wrist. That night I got to watch my son run and play with friends - no social worker, aide, or parent prompting him – just being a kid. This was possible because of my son’s bravery to venture away from his comfort zone, but the opportunity was offered, no, insisted upon by your children. We all chatted while our kids frolicked, and I got to be just one of the moms. I went home from that ice cream social with high spirits.

Your child is so much more than a playmate. Your child is the friend who encourages my son to raise his hand in class. Your child has made him comfortable asking for sensory and movement breaks, referring to these accommodations as cool privileges. Your child often accompanies mine on these breaks, and while I’m sure they enjoy the break from class too, they engage my child without asking why he’s given these breaks.  

When your child invites mine for playdates, he hesitates, not because he’s not excited to play, but because leaving his familiar environment and predictable afternoon brings its own challenges. Often he asks that your child come to our house instead. He always has fun at your house once he’s there, but your child is just as happy to roll with the punches and play at our home. On one of these playdates, we were having some work done in our basement, and our internet cable was accidentally cut. I was informed it would be two days before it could be repaired. In general, dusty, noisy home repairs and a cut internet cable equals first world inconvenience. For someone on the spectrum, an unexpected change on top of a noisy disruption in their safe environment is a potential recipe for a meltdown. This particular week, my son’s fixation is building a boat in Minecraft with his brother. Per our therapist’s recommendation, he gets this at the end of his day. When you’re looking forward to something and it doesn’t happen, you probably feel disappointed and maybe frustrated. To my child, unexpected disappointment can feel like the end of the world.

            
But it can look like a bratty temper tantrum to the outside observer. I get it, I do. I’m telling you this because on this day your child witnesses a full-blown screaming, crying, throwing the X-Box remote at the (already cracked) television screen, and falling on the floor. I won’t add a full dissertation on the difference between a tantrum and a meltdown but suffice it to say no seven-year-old CHOOSES to have a meltdown in front of a peer – especially a classmate. But here we were. While attempting to deescalate, I glanced over at your child lingering at the threshold of the family room with a pensive frown on their little face.


In that moment, I froze. I didn’t want your child to be scared, but I didn’t want to embarrass my child further by attempting to explain. Before I could decide how to handle the situation, your child came into the room, walked up to my child, and without missing a beat, said, “E., I’m sorry you don’t get to play Minecraft today. That’s sad.”

My mouth hung open. Without prompting and in the sweetest voice possible, your six-year-old did what I’ve personally witnessed countless educated adults fail to do in these situations – validate feelings and show empathy. Your child didn’t see a kid “too old to be acting like that” being a brat. Your child saw a friend and fellow human upset, and showed understanding without judging whether or not his reaction was too much. My child didn’t respond immediately, but ultimately your child coaxed him out of his fixation and into another activity. 


I’m rambling now, but this event made me think. As an advocate for my child, I feel the need to learn every single fact about autism, therapy, and how to diffuse meltdowns while also raising awareness to other people. I believe those stares and passive aggressive comments (always from adults) in public sprout from simple ignorance rather than cruelty. After all, autism is an invisible disability. However, I doubt your child knows or understands that my child is on the spectrum. They probably haven’t stayed up until 1:00 A.M. reading articles and scouring online support groups. They don’t have any letters after their name (yet). In this moment, none of that was needed. Good old-fashioned human empathy and validation did the trick. What would life be like if we all responded that way? Maybe the opposite of ignorance isn’t knowledge but compassion.


In my long-winded way, I’m circling back to you, parent. Your child learned empathy and compassion from somewhere. They learned inclusion and kindness. They learned that sometimes the most valuable friends are those you have to work a little harder to get to know. Maybe you’ve sat your child down and talked about differences. Maybe in the beginning of the school year you reminded your child to be kind to classmates and look for the kid keeping to themselves at recess. Either way, I can safely assume your child has learned the most from watching you.

            We don’t know each other well, dear parents, but we know our kids watch us even when we think they don’t, and they’re always absorbing like little sponges. When you approached the new, socially anxious mom hiding in plain sight in the farthest corner of the classroom, they were watching. When you offered a kind word to someone having a bad day, they were listening. When you responded with compassion instead of snapping back at the cranky barista, they noticed. So, thank you for modeling acceptance, understanding, and perseverance. Our kids are only in first grade. Chances are they’ll lose touch over the years. But your child will always be the reason my child didn’t play alone in first grade. Your child will always be the reason my child didn’t have to feel different. Chances are my child will remember these friendships and sense of belonging well into adulthood. I’m not saying this to be cheesy. As an adult, I can name every bully, but I can also describe in detail every classmate who showed kindness. 

Through their persistence, your child gained an invaluable friend. E. is the most loyal person you’ll meet. E. is a fun, silly, imaginative, and complaint playmate. Your child took the time to learn this. Thank you for sharing your child’s pure heart with our family.

           

With love,

A Fellow First-Grade Mom

What my Sons Have Taught Me

As I sit down to write about what my sons have taught me through their struggles and triumphs living with a disability that they don’t fully understand (especially my four year old) I realize it’s going to be difficult. It would take far less time to list what they haven’t taught. I just celebrated my seventh Mother’s Day. I was twenty-five and naïve when my first child was born. Go ahead and do the math. I didn’t know what I didn’t know. I mean, I did a lot of babysitting growing up and I was a nanny for twin toddlers in college, so obviously I was qualified to be a mother, right?

            

I didn’t know that the only food I’d be able to keep down for the first four months of pregnancy was Kraft macaroni and cheese. I didn’t know that I would call my pediatrician’s emergency line at ridiculous hours for ridiculous reasons, (“Why is he sleeping so much?” “Is green poop normal? Google told me it could indicate too much iron.”) terrified that I’d miss something. I didn’t know that I would miss something. I would pass off my sweet, docile toddler’s dramatic and overnight behavior change just before his third birthday as acting out because of the new baby coming. I would blame his violent meltdowns on attention seeking while I was consumed with caring for a high needs baby and his father travelled. I would tell myself the appearance of phobias were just things he’d grow out of and that all kids were sensitive to the shrieking of baby brother. I let people tell me that he would adjust to kindergarten when he was five. That was one of the most crucial lessons my eldest son taught me. He taught me not only to listen to him but to also listen to myself and trust my mom instincts. God gives us those instincts for a reason. No one knows your child like you.

I pulled him out of school under the wagging fingers of the school social worker, principal, and teacher, who believed the problem was me. I was being too soft. That his hands clamped over his ears in the lunchroom, the tears rolling down his five year old face, and the gagging at hot lunch day were not symptoms of a problem but a deliberate act put on by a child who simply didn’t want to go to school. But I had swallowed and indeed fed myself the “kids do this” line too many times. I have always gone far beyond being a people pleaser, struggling most of my life with anxiety over what people think of me. While counseling was a huge tool in my overcoming this, it was A who taught me that what people believe about me is not nearly as important as what I believe about myself, and others’ opinions can’t hold a candle to what’s best for my child. A taught me that I can’t control what people believe, and just because someone believes something doesn’t make it true. When A was diagnosed with autism spectrum disorder at six years old, he taught me about self-forgiveness. I had to forgive myself for what I didn’t know. It had been wrong of me to punish him for meltdowns that he couldn’t control. He was teaching me how to parent him and he was teaching me how to be kind to myself.

When I began homeschooling A, it was truly my job to teach him, and it was daunting at first. Once again, he’s taught me so much more. Every day that we spent locked in battle, every dent door and torn up math sheet would make me question myself again. “Maybe everyone’s right; maybe I can’t do this. He’ll fall behind.” They weren’t and I can and he didn’t. A year of intensive therapy, an amazing hybrid school where homeschooled kids attend small classes twice a week, and a lot of learning later, A has blossomed in a way I could have only hoped and prayed for. Homeschooling is absolutely the right decision for him, despite the well meaning advice from naysayers, including therapists. A taught me to have confidence in myself, and in him. A taught me that the toughest situations can get better with a lot of faith, hard work, and patience. A taught me that the autism diagnosis I was so afraid of is not a prison sentence but merely a roadmap, a tool. The autism that makes it difficult for A to participate in large groups, the anxiety that makes sounds, textures, and smells hard for him, also makes him understand others’ differences. When A sees a child throwing himself on the floor in the grocery store he will be the first to say, “I feel bad for him and his mom. It seems like he’s having a really hard time.” He has compassion for a situation that many adults sadly approach with scorn and assume to be “bad parenting”.

 I can’t leave my precocious E out of this conversation. E was spitfire before he was born. He was so active his little feet knocked one of my ribs out of place! Little did I know this little boy would change my flat screen world to three dimensional HD color. E started teaching me when he was an infant. When I say he NEVER slept, I am not exaggerating. The first time he ever slept more than ninety minutes at a stretch, he was 15 months old. The well meaning advice-givers told me to let him cry it out and that I was spoiling him. Now, I am not against the cry it out method itself, but E needed to be held. He needed to rub/pinch my arm and comfort nurse. He needed touch and motion to feel calm and secure. Since he was conceived E and I have had an almost uncanny connection. I knew I was pregnant with him even when test after test sowed one line. You can’t not know E is there. If you know him, you know what I mean!

E has always taught me what he needs. To this day, E still needs touch to fall asleep or to calm down. E taught me that it is possible to do whatever you need to do for your children, even function on an hour’s sleep. Moms are super heros, whether your child is typical or has special needs. When E started preschool at the same school A attended, he taught me to be flexible. We loved (and still love) the school, but it became apparent that E needed more than the school could provide. Due to his difficulty following verbal instruction, E was not able to complete our school district’s evaluation process accurately. He did not qualify for special education that spring, at two and a half. In the fall of his second year of preschool I returned to the district’s early childhood center armed with the results of a private evaluation completed by and occupation therapist. The results showed that E had dyspraxia and sensory processing disorder. He was reevaluated at the early childhood center and this time he qualified for special education placement, a full IEP, and bus service. E has been obsessed with school buses forever, so this was and still is thrilling for him. The child who struggles with transitions runs out to that bus every day like it is a flying carpet arriving to take him to Disney World.

            

E taught me persistence. E taught me advocacy. E taught me that one person’s special ed school bus is another person’s golden chariot. E teaches me courage every day. The first day that bus arrived to take him to a brand new school, he jumped on and bravely waved to Mommy from the window, headed for the unknown. E teaches me that life is an adventure. When I mention in conversations that E  receives special education services, I’ve been met with an , “I’m sorry”. Please don’t be. I’m not. E is thriving. His speech has really taken off.

           

E’s meltdowns and aggressive behavior have increased lately. When he received his official autism diagnosis at four, it wasn’t a surprise. Applied behavior analysis therapy was recommended. I was nervous and overwhelmed. A lot of hours, a lot of therapists coming and going through our home, and varying opinions in the autism community left me unsure. Still, we tried. The benefits are already apparent. E has taught me patience.

          

E teaches me tolerance and compassion. Public outings are a struggle with E. He jumps first, asks questions later. He has no concept of danger. If you’ve seen me out and about with E, you’ve probably seen him elope. You’ve seen me running after him. E does not do this to be naughty. He does it because the world is his playground and when he sees something interesting he runs straight for it. His expressive language is delayed, and like many on the autism spectrum, verbal communication is a challenge for him. It is difficult for him to stop and say, “Mom I want to go see that.” Conversely, E is prone to sensory over load. When he needs to escape a crowded, noisy, bright place he will simply take off. He is quite literally fleeing with no regard to where he is going or if an adult is coming with him. E will also fall on the floor and kick and scream when he gets over loaded. He may also seek sensory input by touching things, repeating phrases, or making loud noises/speaking loudly. Sadly, people gawk at E like he some sort of exhibit when he does these things. You can’t look at E and see that he has a disability. E has taught me to have a thick skin. Yes, it is exhausting and sometimes even heart breaking to take E to a restaurant, the grocery store, or the children’s museum, but I will not hide him away or deprive him of going to fun places like the museum or Rainforest Café so that the world will be more comfortable.

           

E has taught me that there’s often more to behavior than meets the eye, and I’m not just referring to autism. I feel like I have become a more accepting, less judgmental person all around. I still have a lot to learn, but I would like to think I’ve learned to choose kindness over judgment more often. My child flailing on the floor of the Lego store is not being a brat. He is experiencing sensory overload due to a lot of people, fluorescent lights, colorful displays. Likewise, the obnoxious person who doesn’t know when to be serious may be insecure and using humor to cope with social anxiety. The mom on her phone at the park may be burned out. This might be the first time her kids have entertained themselves all week and she’s finally sitting and catching up with friends or reading an eBook. The person with the bad temper who is angry at the world may really just be sad. I’m not saying behavior should be excused, but there’s usually an explanation. E has taught me that the world still has a long way to go when it comes to acceptance.

I believe my boys have taught me more than I could ever teach them. Seeing them try, struggle, and try again teaches me strength. Being in tune to their needs has helped me to be in tune with my own. When A goes up to his room with noise cancelling headphones, his blanket, and his iron golem stuffed animal, he teaches me that it’s not only okay but important to take a break when its needed. When E runs like the energizer bunny, he teaches me to never apologize for uniqueness. My boys have taught me that some people will never understand, never try to understand, and that’s okay. We won’t hide away to make them comfortable. My boys have taught me love behind measure, patience I didn’t know I was capable of, self-care, grace, and that the world is a better place with them in it,

The Diagnosis

There it was in black and white. It wasn't a surprise; in fact, it was exactly what I'd been suspecting for years. Still, on paper it looked so official, so permanent, so undeniable. Autism spectrum disorder, level one. Before the diagnostic label changed, this would have been called Aspergers disorder. Level one is now used to signify a high level of functioning. The diagnosis specified an exclusion of verbal or cognitive delays. It's all very clinical. Except it's not. It's my child.

He's the same child he was before the diagnosis, but I'm not the same parent. As one friend put it, I'm now part of a club that no one wanted to join, but if you have to join the "autism mom's group" you will find a lot of support. We came to this diagnosis after a seven hour two day psychological evaluation. I know a lot of parents with children on the spectrum can pinpoint an age where their child changed or regressed, a time when they began to notice something was a little different. I can pinpoint this time to when my child turned three. I used to joke that he bypassed the terrible twos and became totally different at three. Except it really wasn't a joke. Of course, the question even science cannot yet answer isn't why but what? What causes autism? Is it linked to the mysterious week long high fever my son contracted two weeks before his third birthday? Is it genetic, biological, or both? Is there a causal relationship between autism and vaccines or diet? I can't answer any of these questions, and if I have learned one thing through curve balls in life it's to make peace with the not knowing. It's human to want answers. When we know why something happened, it is easier to wrap our heads around it. In reality not everything has a discernible reason.

I will most likely never know the why of my son's autism, but I know the what. I know what to call the bundle of symptoms: the non stop talk about obsessive interests, the difficulty reading social cues, the separation anxiety, the sensitivity to smells and noises, the rigidity and the outbursts. More importantly, I also know the who. The part that can't be summed up on paper. The boy who insisted on using his own money to buy his brother a birthday present. The boy who is incredibly smart, who can tell you all about garbage and recycling, and more recently, Kidz Bop and Taylor Swift. The boy who is fiercely loyal to his friends and does not hesitate to stand up for a classmate being picked on. The boy who asks if we can learn about undertows in school this week. The boy who thinks more than the average person and also has an impressive degree of self awareness. Sometimes when he is still awake two or three hours after being tucked in he will tell me, "Mom, sometimes my mind gets the best of me. It's like a computer with pictures in it and the pictures keep coming up on the screen." I am glad that he can explain this. The who I knew before the diagnosis.

So what does a "label" mean, exactly? The very use of labels is controversial. Despite efforts to raise awareness, there still exists a pervasive belief that autism is nothing but the latest fad label. Awareness of the spectrum is limited. Some people have an image of autism as a kid that can't communicate at all. Some have an image of a quirky genius. Autism is both of these things and neither of these things; the autism spectrum is everything in between. The saying goes, "If you've met one person with autism then you've met one person with autism", Why the label? The diagnosis is a tool. The diagnosis tells me not only the what but the where and the how. I know where to turn for support, resources, and the therapies that will help my child and us as his parents manage his struggles and build upon his strengths. I know how to understand his beautiful mind a little better and I know how to meet his needs. Not entirely, of course. Not perfectly. But better.

We have decided to continue homeschooling, gradually increasing the hours he spends at the school he attends for homeschooled children. The teacher and administrators have already been wonderfully accommodating, intervening promptly and effectively when he was having difficulties with a classmate, allowing him to choose not to participate in recess, and allowing him to participate in the chapel with fewer children when the all school chapel was too loud and overwhelming for him. The latter two accommodations were made without me asking. The small classroom of only nine kids and the small lunchroom allow him to be more comfortable but still challenges him to function socially and within a group. He is also in an environment where his individuality and needs are respected, which is the best way for him to learn. He will also begin participation in a social skills group and take classes at the local public school. His IQ tested in the 94th percentile, so we are hoping to get him in some advanced classes that meet his need to be challenged and his comfort level. Finally, we are working on visual schedules to help him with transitions. He does best when he knows what to expect and has some control over his environment.

When he is old enough to understand we will tell him about his diagnosis, because it is nothing to hide. We never want him to feel ashamed. It will be up to us to explain what it means. He has difficulties that many people don't experience, but he also has a unique way of seeing the world. He can understand things that others cannot. He feels more deeply and thinks more intently, which means his lows may be lower but his highs will also be higher. When he's old enough I plan to have him volunteer with me one Saturday a month when I work with kids on the spectrum. I believe that God calls us to use not only our gifts but also our struggles to help others. I want him to use his unique mind to understand and reach out to other kids who might be struggling, or might not seem to fit in.

 That will be his lesson. Mine is to always trust my parenting instincts. When my son started kindergarten at five I saw him sitting in the lunchroom with his hands tightly over his ears and tears rolling down his face while kids talked over and around him. I saw the teacher carry him into the classroom kicking and screaming. I listened when he begged me not to make him keep going to that school. I listened to my instinct and to my child, not to the "experts" who told me, "Oh, Mrs. Clark, kids do this. He's fine. He'll adjust. Maybe you just need to learn to let go?" Or maybe my child is on the spectrum and cannot handle a noisy lunchroom or a crowded classroom or a long school day. I tried to tell myself it was just a phase, he was just young, things would work themselves out, but I didn't believe it. As a parent, you know your child. If you know in your gut something is going on, don't let the word "just" enter your vocabulary. You are the first expert and only advocate for your child. Trust yourself and trust your child.

 If you are a fellow autism parent, I can't tell you why your child has autism, but I can tell you why your child has you: because you are the best for them. You are the perfect person to love them, struggle with them, fight for them, guide them, and sometimes just fumble blindly through the dark with them. If autism is not a part of your life, I simply ask you to understand that there is no single picture of autism. That child in the grocery store who is too old to be acting like that might be on the spectrum. So might the cashier. By the same token, a child on the spectrum may appear to be function no differently than any other child, but this doesn't mean the diagnosis is any less legitimate. This same child may go home tonight and refuse to sleep until all of his money is counted and he had read no more or less than three chapters in his book. If you've met my son you've met an intelligent, empathetic, loyal, intuitive boy who will talk your ear off about Taylor Swift and Kidz Bop. You've also met one person with autism.

Tough Stuff Tuesdays: Of Special Concern

Sometimes I wonder if the mothers of June Cleaver's day held themselves as heavily responsible for their children's psychological development as we do today. We have a better understanding of the workings of the brain than we did when I earned my psychology degree nine years ago, but many questions remain. Children are being diagnosed with learning disabilities and autism spectrum disorders at an alarming rate, and the question is, why? Is the frequency of these disorders actually increasing or is the advancement of diagnostic tools allowing such disorders to be recognized more easily? I would like to think it's the latter. Of course, the question that every parent wants answered is why? When exactly do these subtle differences in brain development occur and what is the cause? Most of the time these questions cannot be thoroughly answered, although theories abound.

We know that much of what controls the brain is neurochemical and far beyond our control. The more difficult inquiry is the role of environment. It is almost impossible to tease out exact casual environmental influences on behavior, learning, and social emotional development. I fear that unproven and often times lay person theories only serve to point a finger, which is rarely if ever helpful. As if having a child with special needs is not confusing and challenging enough, parents must be bombarded with information and opinions. Unlike with physical illness, a stigma still exists when we talk about mental health or developmental disorders. Arming themselves with information, parents wonder, was it the vaccines? Was it too much TV? Was it because I chose to go back to work? Was it because I was always home? Did I play with him too much or too little? Was it the Tylenol I took while pregnant? I am not a scientist, but I think it is safe to say that any one of these isolated issues will not cause brain development to derail. All we really know is that some combination of nerobiological processes and environmental triggers influence the manifestation of a disorder. Clear as mud, right? And frustrating for a parent . Don't we all want to know why? Yet the more important question is how? How can we help our children, how can we be advocates, and where do we go from here?

As parents we hold ourselves responsible for our children's development, mistakenly believing that we have complete control. This topic is becoming a personal one for me. My five year old son suffers from anxiety, mostly separation anxiety. While I can drop his two year old brother off in the church nursery without even getting a goodbye, my five year old still complains of stomach aches every morning and resists going in to school. He has improved a lot in a half day kindergarten program, and yet his progress is not where I had hoped it would be by almost the end of the school year. We are also beginning to notice some sensory sensitivities to noise, crowded places, and smells. While he makes friends easily, is able to complete all of his work, and has no social anxiety, he still resists going to school. It is always painful to see regression in your child. He thrived in preschool and I thought the separation anxiety was all but over. He began kindergarten and he was fine for the first week. The curriculum was half day until after Labor Day, and then full days began. My son was very overwhelmed by the long days and the noisy crowded lunchroom where kindergarten through fourth grade all ate together. Every day he cried and kids began to tease him. Being younger than many of the kids by almost a full year didn't help. His teacher, the school principal, and the social worker all assured me in a rather patronizing manner that he was fine and "kids do this". Five weeks in and none of the other kids were doing it.

We moved him to a school that offered half day kindergarten and it has been a much better fit, although he still has difficulty separating. He ruminates a lot and he misses preschool. He doesn't like to be without us. His intellectual maturity far surpasses his emotional maturity. The start of formal education is supposed to be an exciting and bittersweet time for parents and children, but we have yet to taste the sweet. I want my children to gain independence, to need me less as they get older, and to face life with confidence. One of the big questions I ask myself is: are we dealing with a phase or something more? The other question I ask myself is: was it something I did or didn't do? Depression and anxiety run in my family, but I have never been anxious with my children. I encourage them to explore, to run and play and learn new things.But maybe I played with him too much, not giving him time to be left to his own devices. Maybe I didn't push him enough. And the million dollar question: where did this come from?

Where do we go from here? Due to his summer birthday and emotional maturity, we have decided that  he will repeat kindergarten and start first grade at the age of seven. Even at that, is he ready for a full school day? The traditional  treatment for anxiety is operant conditioning, or exposure. In theory, repeated exposure to stimulus over time lessens the response. The cry it out method of sleep training runs on this same principal. Left to his own devices, the crying child will eventually learn he is fine and go to sleep, right? Yet newer and less entrenched theories of attachment parenting advocated by doctors such as William Sears suggest that pushing a child to "toughen up" and separate before he or she is emotionally ready may actually be detrimental. In this school of thought the key is to allow the child to develop a secure attachment to the primary caregiver by meeting all of the child's needs for nuturing and comfort, thus giving him or her the confidence needed to separate. We as adults and as a society have pretty firm opinions about when children should be ready to separate. Kindergarten used to be the bridge between preschool and formal education, whereas now it is a full school day. This is not necessarily a bad thing, but I can't help but wonder, what's the rush? Not all children are developmentally ready for a full school day at the age of five. Parents are encouraged to push kids to separate early and often, but is it really wrong for a five year old to still need extra attention and security? My son has no social anxiety or difficulty learning. Still, I wonder if we will see more regression when he faces a full school day.

The only alternative is to home school him for a year and really work on not only academics but also confidence. I know what you are thinking. How can I teach him independence and confidence by keeping him with me? Wouldn't I just be "giving in" to him, allowing avoidance? Maybe. It certainly seems counter-intuitive. On the other hand, I know my child and I know that pushing him to be where he should be before he is really truly ready tends to backfire. Maybe a year of homeschooling would be a chance to start over, a chance to really work with him so he can restart his school experience with a clean slate. He has it in his head now that school = bad. So far exposure hasn't changed that. Maybe giving him what he needs now will allow him to enter first grade with the normal jitters but also confidence and excitement. I know this sounds like nonsense; like an over bearing mother perpetuating her child's problems. Maybe. I don't have all the answers and on paper I admit it sounds like a terrible idea. Yet I just can't shake this intuitive feeling that it may be exactly what he needs. We have some big decisions to make in a short time. The old saying is that it takes a village to raise a child. Really it takes a strong nuclear family. It takes confidence and advocacy. It takes considering all sources and opinions and in the end doing the best you can with what you have. When your child faces special challenges, typical milestones such as starting school are not so simple. You feel the weight of each decision you must make for another person's future. I wish I had crystal ball. Parenting does not come with a crystal ball, training sessions, or manuals. Parenting throws us curve balls. We have to look at each child as an individual and determine the best path based on the information we have. It is a heavy responsibility. I hope that we can navigate our way over this bump in the road and help our son face his school experience with confidence. The only question left is how? Stay tuned...