I'm a Mommy Blogger in the autism community and sometimes we are in the crosshairs for writing about our children with autism and autism in general, especially from those living with autism. I get it. I don't have autism. I don't know what it feels like to have autism. I don't know what it's like to be my son. However, before I put on my kevlar, jump up on my soapbox and defend my blog, apologize and delete my blog, or chastise other Mommy Bloggers, I decided to try and take the heat off (if only momentarily) by going right to the source. My source, that is, and ask my son Ryan what he wants you readers to know about him, in his words, not mine.

I approached Ryan while he was in mid-creeper kill playing Minecraft (once again putting myself in the crosshairs for interrupting something so meaningful). I told him what I wanted to do and said, "If someone were to ask you who you are, what you're all about, what would you tell them?"

Well, much to my surprise and delightment, Ryan left the creeper killing to some other online gamer, sat on the floor next to me, and I began my "interview" with a most reliable source. Ryan easily told me "who" he was and at times he even grabbed my phone out of my hands and started tapping away, frustrated with my inept and slow typing speed. I was amazed that for someone who "has an extreme fear of sharing personal information", how much he wanted you to know.

So here you have it, straight from the horse's mouth ("I'm not a horse Mom. Sometimes you're kind of dumb".). Yep, sometimes I am.

1. His name is Ryan.
2. He is 14 years old ("I typed that since I will be 14 in two days").
3. He is in 8th grade.
4. He loves Minecraft. (A lot, a whole, whole lot).
5. He loves his dog Rookie.
6. He love his family...most of the time (He struggled with whether to use the word "some" or "most". Sigh).
7. He loves Velveeta Shells and Cheese (Original only. Never, ever, ever, the gross 2% milk kind that doesn't taste "fresh").
8. He loves listening to The Pulse on XM Radio.
9. He has perfect pitch and he loves to sing in chorus (and thanks to XM Radio, in the car now too).
10. He love the singer Ed Sheeran (and he can mimic his singing fairly well. Call us Ed Sheeran, Ryan is waiting).
11. He is an excellent student who loves school ("not making the Honor Roll would be a fate worst than death". Ummm...I don't think so, but, this is his list).
12. He loves Hollister tshirts because they are so soft (and the ones that are three years old are the softest of all regardless of how they fit).
13. He hates the feel of paper ("I can feel the paper right in my spinal cord").
14. He loves Rita's root beer gelatis (and hates that they are closed from October-March).
15. He loves Auntie Anne's Cinnamon Sugar Pretzel Nuggets (and loves that they remain open all year round).
16. His favorite season is a "competition between summer and fall" (it's hard to choose between watermelon and apple cider).
17. He wants to learn to play guitar (see Ed Sheeran comments above).
18. He wants to learn more about computer coding (I fear he will one day move across country to work in Silicon Valley and forget how perfectly I make those Original Velveeta Shells and Cheese. Does Rita's stay open all year long in California?).
19. He likes his hair long, not short (and he rocks it too).
20. He is a vegetarian. Meat is "gross" (unless you count hot dogs and fish sticks as meat. He does not).
21. Sometimes severe storms make him a little "paranoid" (not nearly as paranoid as they use to though).
22. He prefers writing over talking (and is really quite good at writing).
23. He loves watching Minecraft "play-throughs" on YouTube (yeah, I don't get it either).
24. His favorite vacation spot is Disney World (even though sometimes he "hates walking through all those parks").
25. He knows when he reaches his limit, like when I asked him what he wanted number 25 to be and he said, "I think that's enough. I'm done."

That's a lot of information. I consider my source very reliable and AWEnest and I was amazed at how long Ryan sat still for the "interview". I think he really wanted you to know exactly who he is and exactly how he sees himself. As you can see in Ryan's list of 25, well, ok, technically 24, things he wants you to know about him, The A Word did not make the list. The A Word was never considered and never mentioned...until I brought it up. "Would you want someone to know that along with being an excellent student, a beautiful singer and a great gamer, that you also have autism?". With a sincere and confident look on his face, he said, "No, I probably wouldn't tell them that because that's not who I am. Wasn't I suppose to tell them about who I am?". Yes, yes, you were my AWEsome boy.

There has been a debate recently when discussing someone who has been diagnosed with an autism spectrum disorder as to whether they should be described as "a person with autism" or an "autistic person". According to Ryan, when it comes to describing him neither label is necessary because autism is not who he is. He is a son, a brother, a dog lover, a singer, a gamer, an Ed Sheeran fan, a future coder, and a vegetarian (sort of). Autism is not who or what he is, something all of us Mommy Bloggers, parents, autism advocates, doctors, therapists, teachers and pretty much everyone in the whole wide world should take note of.

As he got up and returned to his creeper killing, Ryan assured me, "this discussion is over" (see #25). It certainly is my boy, it certainly is. 

Well, after all the shark hype this summer, after contemplating building shark proof cages sized specifically for each one of my children, I'm happy to report that we did not spot one dorsal fin the entire week we were at the beach. That's not to say I wasn't on alert all week, watching and waiting for either a scream of "shark!!" or for the lifeguard to stick one of his colored flags in the sand, warning us that today was not a safe day at the beach and to pack it up and head home.

Those lifeguards have it made...most days. As long as no one is being attacked by a shark or being sucked out to sea by a powerful riptide, they cruise the beach on their four wheelers, flags at the ready, letting beach goers know what lies ahead without ever uttering a word. The flags speak for them.

You see, the lifeguards have a colored flag that gives you a heads up as to what exactly the ocean has in store for you that day, so then, you can decide for yourself if the risk outweighs the gain. Many variables are taken into account when determining the flag color, and the color can change quickly, without any real warning, except maybe a lifeguard whistle heard off in the distance. 

After a rough day last week, I decided there should be a flag system for autism. Various colored flags letting you know what autism has in store for your child that day so then you can decided if the risk outweighs the gain and you can prepare yourself to be ready for whatever lies ahead. These flags could help you see what might be bubbling and brewing right beneath the surface that you wouldn't ordinarily have planned for if the flag hadn't warned you.

Red flags. Serious hazards may pop up today and the currents are "dangerous" and very "unpredictable". You need to be on alert for sensory meltdowns, accidentally picking up the 2% Milk Velveeta Shells and Cheese instead of the Original, and the occasional matchbox car that might get chucked by your head. One red flag means, "look out". Two red flags means pack up, pull the covers over your head, thrown in your child's favorite DVD, open your favorite bottle of wine and call it a day.

Yellow flags. A cautionary alert. High currents that could knock you down, but, not quite a run the other way red flag kind of day. Even though it's not a red flag day, keep your guard up anyway. Yellow can change to red in the blink of an eye. It may be a rough day, so you should still "exercise extreme caution". Keep those matchbox cars hidden under your beach towel and check that Velveeta Shells and Cheese box twice before serving.

Green flags. Autism is always unpredictable, so even on a calm, clear day, hazards still exist. Keep a close eye out and always be ready for the unexpected meltdown, change in routine and the possibility of a green flag day quickly going to a double red flag day in a heartbeat. It happens.

Blue and purple flags. Your kid may be having a stellar day. No screw up with the Velveeta Shells and Cheese, his favorite shirt was clean and no changes in the routine are seen in the forecast and autism seems far off in the distance. However, just like sharks, jellyfish and other dangerous marine life can pop up without warning in the ocean, bullies on the school bus, the playground and in the classroom could be lurking, just waiting to sting. So, even on a green flag day, watch out for unforeseen dangers.

The eye doctor appointment started out as a beautiful, calm, green flag day with no other flag in sight. Ryan spoke for himself, answered all the doctor's questions in the occasional YouTuber scripted voice and was social and pleasant. I sat mezmerized as this green flag moment brought joy and pride to my heart. Then the skies darkened and the waters got rough when the eye drops surfaced from deep within the ophthamologist's drawer. The green flag was quickly removed and replaced with a yellow one. 

Warning signs were everywhere that the yellow flag may soon be upgraded to red. Ryan's breathing increased, his hands and body became "twitchy" and both the "lifeguard" and I went on alert. There was shaking, yelling and cries of "do not". However, after a great deal of convincing, cajoling and bribing, Ryan allowed the most patient lifeguard (ophthamologist) I have ever met, to put the eyedrops in and that's when the red flag went up. There were tears, cries for help, head squeezing and vivid descriptions of how the eye drops were attacking his body. At one point, he became so still, so "checked out" that I was a little concerned that maybe Ryan had gone too far under the water this time and I wouldn't be able to save him. 

Ryan eventually surfaced. He had just raised the red flag and closed the beach for the day. He was done. It was too much for his body to handle, so, Ryan closed the beach and went somewhere in his mind where he was safe from unforeseen hazards like burning eye drops and shut us all out. It took my big squeezes, my deep pressure hugs and my assurance that he was ok for Ryan to finally open his eyes and tell me, "don't stop squeezing, it's releasing some of the pressure that is boiling up inside my body". So, I kept squeezing, and cared little that a 125 pound, 13 year old boy climbed on my lap to help him regulate. 

It was hard to watch. I have seen many meltdowns while swimming through these waters, but, I thought at almost 14 years of age, maybe, just maybe, Ryan's strokes had become stronger, his endurance greater, but, some things, even the strongest swimmer can't see coming.

I wanted to raise the red flag too. To call it quits. I too, was done and felt the waters were just too dangerous, the currents pulling us both under, but, I didn't, I couldn't, I won't. You see, I have something the lifeguards don't carry on the back of their, "let's predict your beach day four wheeler", but, it is something Ryan needs me to carry at all times, the white flag. Ryan counts on me to stick the white flag in the sand. To help him surrender to whatever onslaught of emotions or sensory overload his body succumbs to that day. As I sat holding him, giving him big, squeezy tights, I realized that I am Ryan's white flag. I warn people when he has had too much, when he needs to retreat, when he's done fighting, because in those moments when Ryan's body doesn't respond in the way he wants it to, when he can't reach the white flag, I stand up and grab it for him. 

So, even on the days I want to put up two red flags, close the beaches and climb back under my covers and watch Netflix, I don't. While the two of us sat squished in that ophthamologist chair, I recognized that even in the roughest seas, I can't take the easy way out and raise the red flag of autism and close the beach for the day. No, my job is to carry the white flag for Ryan, always having it at the ready, until one day, he can raise the white flag on his own. 


Just like the unpredictability of the ocean's currents, autism is an unpredictable force of nature too. There is no flag system in place to alert my son and me to the force of autism each day, so no matter what danger enters our waters and no matter how rough the waters get, we will battle together until the green flag flies once again.

I see their looks. I see their stares. I see their smiles bordering on a smirk. I see their patronizing high fives. Sometimes, I wish I had a blindfold.

I hear their voices. I hear their silence. I hear the way they speak to him as if he were a young child. Sometimes, I wish I had ear plugs.

I feel my sadness. I feel my anger. I feel the ache deep in my heart. Sometimes, I wish I had no heart.

These feelings often sweep over me, and settle on my chest, directly over my heart to the point of suffocation, but, then, the feelings go as quickly as they came leaving me to breathe easy once again. Anymore, these moments and these feelings are few and far between, but, when they come, they leave a scab that I tend to pick at for days until eventually the scab heals with just a small scar that is visible only to me.

It was a hot summer day, in the oldest public building in town. A church, built in 1825, which meant, no Wifi and no air conditioning. A group of teenagers gathered at the front of the church sitting among the pews giggling, chatting and warming up their voices. At the end of the pew, against the wall, sitting alone and seemingly unaware of the buzzing activity surrounding him, sat my son, Ryan. Ryan sat quietly looking over his music preparing for the day's performance while I almost vibrated out of the pew. His sensory system, which is often so heightened, seemed unaware of all the buzzing activity going on around him. In fact, for a change, it was not my son's sensory system on edge, it was mine. 

It wasn't Ryan who wanted to bolt out that old church door to escape the feelings that overwhelmed him, it was me. As I sat in the church, with little to no air moving, my chest felt heavy. I wanted to run out of the room with my old friends Denial and Clueless, who had slid in next to me on the pew when I wasn't looking making the hot church feel even closer, to escape what my brain and my heart were feeling. So consumed with my watching, waiting and worrying for what had always been, there may have been a few moments that I missed what really was.

As parents continued to arrive and the temperature of the church continued to rise, I felt my heart beating in my chest and a trickle of sweat began forming on my brow. I watched, waited and hoped with anticipation. Would one kid talk to him? Would one kid see him? Would he talk to one kid? Would he see one kid? After all, he just spent a week with these kids at chorale camp so it was reasonable for me to get my hopes up, right? Nothing. Not even a nod, a hello, or an acknowledgement...on either side of the pew. And although my heart was pounding and my sensory system felt like it was on overdrive, Ryan looked happy, content and fine. As always, it was my problem, not his.

Once the performance began, once my son stood shoulder to shoulder with the rest of the chorale ensemble in front of the non-air conditioned church, he blended in with the others. He did not stand alone, he did not appear "different". There was no aloof stance, there was no awkward smile. There was just the music and his voice. Suddenly, I felt my heartbeat slow down and the church no longer felt so stifling.

Within the first few notes, the tears began to fall. Not his, mine. He immediately looked my way, seeing no one but me, and once he saw my smile, once he saw my tears of pride, his smile and his tears matched my own. You see, we have sat in many rooms together, the two of us, where no one saw him like I did. Where no one heard him like I did. Where no one felt him like I did. However, on this day, when his beautiful voice bounced off those church walls, I believe they all saw him, heard him and felt him as I always have. I had waited for that moment for a long, long time. Funny thing is, I don't think Ryan has.

As he finished his song, there were smiles, there were high fives, and there were "good jobs". Even after all that, a part of me still worried that their smiles, their high fives, and their "good jobs" may not have been sincere, that they may have been a bit patronizing because they saw "different", but, when I watched my boy take his bow then fight back his own tears of pride, I realized that what matters most to Ryan is how sees, how he hears and how he feels about himself. Ryan spends little time concerning himself with how others perceive him. A lesson we could all learn from him.

Had I worn my blindfold, had I brought my ear plugs, had I removed my heart, I would not have seen him, heard him or felt him and there is no worry great enough and no pain deep enough, worth missing that. As for their smiles, their high fives, and their "good jobs", they may not have been insincere or patronizing, but, even if they were, I need to take a lesson from my son and recognize who and what really matters.

Once again, Ryan showed me, it is my problem, not his and it is a problem I believe he has already solved.

I love summer. I hate summer.

I love the long days with nothing to do. I hate the long days with nothing to do. I love sitting on my back porch book in one hand, drink in the other. I hate the guilt I feel for not having a third hand to hold the vacuum cleaner while holding a book in one hand and a drink in the other. I love the routine-less routine of summer. I hate the no routine of summer. I love the hot sticky days of summer. I hate the finger numbing air conditioned days of summer. I love the late night Netflix binge watching of summer (currently binging Silicon Valley and believe Ryan will one day live there). I hate the zombie like stage I'm in from late night binge watching Netflix of summer. I love that Ryan has nothing to do (homework). I hate that Ryan has nothing to do (I mean, nothing). I love that I pretend not to worry. I hate that I do worry.

They say you are only as happy as your unhappiest child. Well, it's easy to see why I was happiest this summer when Ryan was busy with three different camps. No, not because he was out of the house and I could nap from my night time Netflix binge watching, but, because he was out of his room...out of the house...doing something...anything. This summer my son has joined the likes of the California red legged frog and the North American desert tortoise and hunkered down to aestivate this summer. Aestivate (or estivate) is a fancy word for hibernating in the summer time. Yep, no doubt about it, my boy is an aestivator.

Animals who aestivate, do it for one or more of the following reasons:

1. To protect themselves from the heat. "It's too hot to go outside".

2. To stay hydrated when water resources are low. "We're out of juice bags again".

3. To avoid contact with other species. "I stay in my room alone all day because most people bore me".

4. To conserve energy when their food supply is low. "I'm starving because I ate breakfast late so I didn't want lunch at lunch time and now I want dinner, but, it's only 4:30 so I can't eat dinner this early".

According to Wiki, "animals who aestivate appear to be in a fairly 'light' stage of dormancy as their physiological state can be rapidly reversed, and the organism can quickly return to a normal state". A shout of, "Hey Ryan, do you want to go to Rita's for a gelati?" will quickly awaken him from his "light stage of dormancy" as he bounces down the steps and grabs his flip flops from the closet. While enroute for his sugary, sweet, gelati, this awakened state continues as Ryan jumps in the car, removes his flip flops, crosses his legs and turns on XM Radio, praying an Ed Sheeran song comes on. However, as soon as the gelati is consumed, the car is parked in the garage and the flip flops chucked into the closet, Ryan returns to his room and his dormancy resumes as does my worry. Perhaps I should aestivate too. Or at least drink enough wine to feel like I'm in a "light stage of dormancy" until school begins.

I get and appreciate the lazy days of summer, but, holing up in one's bedroom day in and day out for most of three months, goes a little beyond lazy, a little beyond typical teenage slugdom, it truly is a little more like aestivation. And I, for one, am ready for my boy to wake up.

Ryan's need for routine, his craving for structure, has always made the lazy days of summer a bit challenging, but, this summer, took lazy to a whole new level. An aestivation kind of level. He has given up swimming, swinging, and jumping the waves in the ocean. All things, according to Ryan, that he is "done with". Besides the occasional scooter ride while we walk the dog, his weekly wake up call for grocery shopping (in order to replenish those juice bags) or the rare trip to Rita's for that rootbeer gelati, this kid holes up in his room playing Minecraft or watching YouTube videos. And before you start judging me, and thinking, "well, just pry those electronic devices out of his near dormant hands", trust me, I have done that and the above picture is just what you get. A boy aestivating with an angry birds blanket covering his head, lying on his bed conserving his energy in case a predator shows up in the hallway all while waiting for the routine-less routine of summer to end.

As I creep slowly past Ryan's room, to see if my boy has awakened from his long summer nap, I hear the sounds of Minions and Austin Powers scripting from his room and I immediately begin to wring my hands. My old BFF Denial magically appears and tells me, "He's a teenager. Ryan's older brother, Kyle, spends lots of time alone in his room too". The difference is, Kyle is never alone as he texts, snapchats and tweets. Since Ryan "does not participate in social media", he is literally aestivating...in his room...alone...all summer long, waiting and craving for his routine to begin again.

That's why when the first back to school supplies started showing up in stores, most children cursed the retail Gods for such a horrific reminder in early July, but, not Ryan. As we entered Target and the giant back to school signs bombarded us, I heard the moans and groans from the three children behind us, but, as I looked over at my boy, he was grinning from ear to ear and under his breath, I heard a quiet mumble of, "Thank you God" while I slowly did a happy dance inside. 

Yes, we will both miss our late night binge watching of Netflix and Minecraft Youtubers, but, we will welcome the routine of school, the routine of fall with open arms. I know once a routine is in place, my boy will wake up from his dormant like state just in time for the joys of early mornings and late night homework. And just as my son is finally waking up from his summer time aestivation, good old mom will be ready to settle down for her long winter's nap in order to avoid the pitfalls of homework and getting to know the teachers (again). 

Ryan and I may be very different species with different routines and different periods of hibernation, but, I know regardless of what the future holds, we will get through each season together. As the gorgeous summer sunsets slowly head south behind the neighbors trees, taking away our perfect front porch view and giving us our first hint that fall will soon be in the air, Ryan will slowly start to wake up. He will occasionally join the rest of the family as we sit on the front porch enjoying one of the last remaining summer time popsicle sunsets. I love those precious, popsicle sunset family moments with sweet, sticky syrup dripping down our arms and spilling onto the porch steps. I hate those precious, popsicle family moments with sweet, sticky syrup dripping down our arms and spilling onto the porch steps which inevitably bring ants from the outside in, looking for more of that sweet, tasty goodness.

I love summer. I hate summer.