Masking. No NOT that kind of mask, I think we are all tired of THAT kind of mask.
I’m talking about the masks we wore BEFORE there was a global pandemic. Example, the “I’m so happy to be here” mask that you put on just as you walk into a party or social event that your significant other dragged you to. The mask that you are wearing in order to convince everyone you interact with that you are so happy to be there when you are dying to be home in your sweats on the couch watching Netflix where no mask is necessary.

Masking, we all do it from time to time, but for autistic people, their masks are used as frequently and are as worn out as the N95’s in a pandemic. Trying to fit in, be like everyone else, practice all the social etiquette and nuances that are required day in and day out regardless if they are at a party, sitting in the school cafeteria, hanging with family or just walking through the mall. Masking is what many autistic individuals do in order to blend in when their body is screaming to stand out.

I know that my 19 year old son Ryan masks in many instances. Maybe it’s when he’s sitting in his college dorm room and his body is screaming to let out a loud script, but he knows that is not what the neurotypical world finds acceptable, so he masks up and holds it in. As his mother, I see through the mask. I’ve seen him pull on the mask as he tries to prolong eye contact, make nonsensical chit chat, interpret an idiom or some vague phrase and hold in a script that is bursting to come out. It has to be exhausting. What is fascinating to me is how quickly Ryan can change or remove the mask.

A few weeks ago, when Ryan was still home from college taking virtual classes, I heard him in his bedroom scripting some meme or vine at the top of his lungs. I looked at the time, it was 12:58 PM. I knew that his class started at 1:00. I waited to see if I heard him again. I did. Even louder. I checked my phone for the time again, it was 12:59. I jumped up from my lunch at the kitchen table and made my way upstairs watching the time and hearing all kinds of hoots, hollers and phrases coming from Ryan’s room, then at precisely 1:00, silence. I waited outside his door and listened. A moment later he chimed in with his classmates.

The autistic mask had been removed and the neurotypical mask was in its place. This mask shuffling is equal parts astounding and heart breaking. The fact he is asked to mask who he is every day with almost all interactions makes me both angry and sad.

Yeah, I know we all mask, somewhat. Chances are, the person your coworkers see is not the person your closest friends see, but most of us don’t have to make a conscious effort that goes against the actual biology of our brain to be someone, or something, we are not.
I am frustrated and saddened that even when this pandemic ends and Ryan can finally get rid of his paper, scratchy surgical mask, he will still carry a mask regardless of where he goes and who he is until one day, the neurotypical world will accept that neurodiversity is not something one should cover up, but something to be seen, accepted and celebrated.
​
This acceptance, starts with you.

So, you finally heard it. The word you may have been both searching for and hiding from. Autism. And with one six letter word, your world tilts on its axis and you tilt with it.

Been there. Done that.

It’s been 12 years since my son was diagnosed with autism. That’s twelve years of doing the best I can to right both his world and mine, not by disregarding his diagnosis, trying to “fix him” or make him be someone he is not, but, by learning, advocating and sadly, screwing up. I’m still apologizing for some of my mistakes.

You will screw up. You will second guess yourself. You will make huge progress then with one FB pic of your kid not making the cut to a party, a dance, or some other social event, you will tumble backwards again. You are human. But even with all your human frailty, you will pick yourself up, dust yourself off and move forward again because your kid needs you to be upright and moving forward. Nothing good comes from looking back.

In those weeks when I struggled to get up, and had no idea where to go once I did pick myself up and brush myself off, I wish I would have had someone to guide me. Someone who had been there, done that. Someone with just a few hints on how to help me help my son in order to try and "right" our world again. Someone with a few words of wisdom.

For those of you looking for such wisdom, here are a few words that may not make you wiser, but, might help you feel more centered:

Breathe. Holding your breath and hoping this diagnosis was wrong and that if you just ignore it, the world will be as you expected once again will cause you to turn blue and pass out. Your son or daughter needs you to be upright and breathing.

Look for parents who have been there, done that. Whether it’s a support group or a friend of a friend, look for support. Better yet, look to an individual with autism. Who better to educate you about autism?

Find your person. You will need one. Someone you can share your child’s triumphs and joys and your progress and setbacks. Find your person and hold them tight.

Care for your child AND for you. There is so much to learn, so many appointments, specialists, therapies and IEP meetings. Don’t forget when you are busy taking care of everything and everyone, to include yourself on the list.

Learn everything you can about autism then tweak what you have learned and personalize it for your son or daughter. Just like neurotypicals, there is no one size fits all for autism.

See your child. I mean really, truly see them. Don’t look at your son or daughter as a collective disorder, see them for the unique individual that they are.

Stop Google searching. In fact, run like hell away from it. Your child is not there. Don’t try and find them on the internet. They are right in front of you. Please don't try and find your son or daughter somewhere else. Let them guide you.

Accept your child for who they are, embrace them, love them, celebrate them so that they will celebrate who they are too.

Remember you are human. You will help your son or daughter feel safe, happy and accepted, but, you will make mistakes, don't belabor them. It's ok, your child will forgive you as long as you learn from that mistake and forgive yourself.

Advocate for your child. No one knows him/her better than you do, however, as they get older, if possible, help them gain the skills to advocate for themselves. 

Laugh often, laugh hard. Many things will throw your world off it's axis, the world is a crazy, spinning, unpredictable place, so when you fall down, stand back up, brush yourself off, laugh a little at your stumble and move forward. Your child is watching you and you need to show them that autism is not bad or less, it's just different and different is not the end of the world, in fact, it's just the beginning of a new one.

This post was created with the help of my 17 year old son Ryan, who is autistic. Thank you Ryan for offering your insight as you continue to take on a world that you struggle to understand and that struggles to understand you day in and day out with such courage.

As a mother of a teenage son with autism, I often wonder if the reason my son spends so much time alone, is because the world, especially the world of teenagers, doesn't understand him. Sure, my kid struggles to understand some of the social rules of teenagedom, due in part to his autism, but, how can we expect neurotypical teens to interact with our autistic teens if we don't educate them on some of what they may see?

Ryan and I came up with a few examples of what a Neurotypical Teen (NT) might see and what an Autistic Teen (AT) might want them to see:

NT: Oh, that autistic kid is sitting by himself again. Guess he prefers to be alone.
AT: Yeah, sometimes I’m afraid to take a risk socially because I'm worried I will mess up, and sometimes I do need a break from people, but, sometimes being alone is lonely.
 
NT: Check it out, the autistic kid is talking to himself again.
AT: I kind of am talking to myself, (it's called "scripting"), but, that’s because I am remembering a funny movie, meme or YouTube video. If you ask me, I might share it with you and make you laugh too.
 
NT: Uh oh, he’s gonna lose it, check out how fast his arms are flapping.
AT: I bet when you get anxious or excited your legs bounce up and down or you twirl your hair or bite your nails. Same.
 
NT: You know, that autistic kid never responds and he hardly says anything.
AT: Sometimes it’s hard to turn my thoughts into words, but, that doesn’t mean I’m not listening or that I don’t have something to say.
 
NT: That dude doesn’t really seem to get me or how I’m feeling.
AT: Sometimes I struggle with reading the emotions of other people unless it’s really obvious like you are laughing or crying. I do have a lot of empathy though, once I know what you are going through. You just might need to share with me how you feel.
 
NT: Sometimes that autistic dude is a little too honest.
AT: You are right, I am honest. It doesn’t occur to me to lie, even if a lie might spare your feelings. I don’t mean to hurt you with my honesty though.
 
NT: That autistic kid's parents must never take him shopping, because he wears that same shirt ALL THE TIME!
AT: You’re right, I do wear this same shirt ALL THE TIME, but, that’s not because my parents won’t buy me new shirts it’s because I feel more comfortable when things remain the same and there is nothing more comforting than a worn in t-shirt.
 
NT: You know, it’s hard to trust someone who doesn’t look you in the eye.
AT: Eye contact is hard for me, it can be very distracting and upsetting to look you directly in the eye. It doesn’t mean that I’m not listening or that I am not trustworthy.
 
NT: Wow, that autistic kid is so weird.
AT: If “weird” means different, you are right, but, how boring the world would be if we were all the same! Take a chance to get to know me, you might find we have more things that are the same than different (“weird”).
 
NT: Wow guy, I was JUST trying to give you a pat on the back to let you know you did a great job, you didn’t need to shove me.
AT: Thanks for feeling proud of me, but, sometimes unexpected touch, like a pat on the back, doesn't feel good to me. Just telling me you think I did a great job will make me feel happy.

NT: I don't know how to talk to that autistic kid, I'm always afraid I will say or do the wrong thing and freak him out.
AT: You might say or do the wrong thing, but, so do I, that's what makes us more alike than different. Even if we both say or do the wrong thing, I promise I will always remember that you tried.

NT: Wow, I just talked to that autistic dude, and he is really pretty cool!
AT: Told you.

NT: (Days later): Hey Ryan!
AT: Hey dude! ("Finally.")

So, last week I slipped a little. Just a small stumble over something I didn’t see coming. I guess it was more like someone I didn't see coming. It was the keynote speaker at an autism conference I attended. Wait, sorry, that sounded like finger pointing. It wasn’t the keynote speaker, who tripped me, I tripped over myself. I got in my own way.  Again.

Sure, what the keynote spoke about, what he said may have been what tripped me up, but, I’ve gotten fairly use to falling, hoping no one sees it, brushing myself off and jumping up again. This time was different. This time, I didn’t have the hands there that always pick me up, so I stayed down a little longer than usual.

The keynote speaker was a very respected autism researcher and he was fabulous and brilliant. When I saw all the science and research info in his bio, being the kind of person who took geology with all the college jocks so I could avoid chemistry, biology and any number of other “real” sciences (just kidding geologists), I expected to be bored and check my Facebook newsfeed. Boy, was I wrong. I was mesmerized and didn’t once check Facebook.

The science of autism and the research that goes into it is fascinating. We are just beginning to understand the incredible facets of the human brain, and therefore, we are also just beginning to understand autism. So, I sat in my chair listening, taking it all in and not really caring where my friends checked in for lunch that day.
 
As I sat taking notes and making a list of questions I planned to ask this incredibly brilliant researcher, he began talking about the causes of autism and that’s when I started to slip. I felt that same ache in my heart that I felt 13 years ago, that same doubt and wonder that slowly crept up my spine, that same guilt of not knowing how or why and what, if anything, I had to do with it. And just like that, I stumbled and was on my ass. Again.
 
I’ve been here before. Lots and lots and lots of time. What did I eat when pregnant? What was I exposed to when pregnant? What did I feed my son? What did I expose him to? Was it my genes or my husband's genes? How did it impact him and not my other kids? What caused my son's autism? It’s been a long time since I stumbled back here and it took me a little longer to get up. Did I mention that I was at a conference? Overnight with no kids? Plenty of time to stay on the ground and not get up, and with the one set of hands who always helps me up playing Fortnite in his bedroom 45 miles away, I allowed myself to stay down for a few hours. I hadn't been down that long for quite some time.
 
So, yeah, I stumbled. I wondered. I questioned. I blamed. I Googled. I fell. Hard. Again.
 
And as I lay there, surrounded in doubt, guilt, wonder and worry, my phone tinged. A text alert. I almost didn't get up. I almost didn't get it. After all, I had fallen and decided maybe a little wallowing alone in a hotel room was just what I needed. But, then I remembered, I'm not on this journey alone. People need me. My son needs me. I picked up the phone and for the first time since I had stumbled, the tears fell.

"Hi”. Two simple letters, one simple word that pushed me back up on my feet and reminded me that "how", "why" or "what" wasn’t nearly as important as "who". And “who” may have not been physically there to pull me to my feet, but, his simple “hi” was enough to get me off my ass and move forward. There is no time to go back and going back does not do him, or me, any good.

"Hi baby. I miss you." No response back. None was needed. He knows. My son knows that even when I stumble, even when I go back, even when I fall really, really hard, I will pick myself up and be there for him. Always. Sure, I may lick my wounds for a few days, but, I get back up and feel stronger from the fall. This wound licking is NOT because I wish my son were someone else, it is not because I think he needs "fixed" or "cured", it's because like any parent, I want the world to see him as I do, brilliant, gifted, funny and determined and unfortunately, that does not always happen.

Yes, I know, the science of autism is incredibly important as it leads us all to understand the what, the why and the how, but, for me, a mother loving a child with autism, the who is what matters most. The who is here, present and indescribably amazing. The who needs supports and resources to help others see how amazing he is and what he can offer this world. The who needs to be understood and accepted just as he is. The who needs me. And the who, my son, keeps me going forward and picks me up when I trip over myself and fall. Hard. Again. Thank God, because I’d never get up without him.

It's been almost 13 years since we first heard the word "autism". My son has come so far since then, and so have I. I remember all those years ago, the guilt, the worry, and the ignorance, I remember it well. It took me some time, ok fine, a lot of time, to get from there to here, here, where I am today. I am so thankful to my son who grabbed my hand and helped move both of us forward.

So this blog is for all you mothers who have just arrived to this new world of autism. One day you too will be "here", but, while you still linger "there" these are my wishes for you this Mother's Day;

1. A day filled with love, even if that love looks different than you expected.

2. A day without racing thoughts of how, when and why.

3. A day without scheduled appointments, routines and researching what to do next.

4. A day to enjoy what is and not worry so much about what will be.

5. A day absent of comparisons. Theodore Roosevelt once said, “Comparison is the thief of joy.” Teddy was spot on, so today, no comparisons, just joy.

6. A day without guilt and should haves, could haves, would haves. Guilt is Comparison's accomplice when it comes to stealing joy. Lock them up today.

7. A day for you to see your child like you did before you heard "autism". That child is still the same, that child is still there, so look. Look now.

8. A day filled with the wonder of seeing the world through your child’s eyes in a way you never have before. It can be a heartbreakingly, funny, difficult, awesome and beautiful world, but, it is now up to you to enter it. Walk through that door with your child today. They are waiting for you.

9. A day to appreciate and embrace neurodiversity. Imagine how boring the world would be without it?!

10. A day to be grateful for your support system of family, friends and other moms on this similar journey. You will need all of them (and wine), let them in.
 
Oh, and one last thing on Mother’s Day, and every day, as you travel this new journey with so many mothers who have come before you, I wish for you the gift of acceptance. I truly believe the best way to receive this gift, is to get to know autistic individuals, no one can offer you or your child more insight then they can. Remember, without accepting what is, you and your child will never get to what, and most importantly, who they will be.
 
And finally, my last wish for you is that no matter the day, you never, ever give up hope.
 
Happy Mother’s Day!

To my son's teachers,

I was there once. In your seat.

Ok fine, maybe it wasn’t your actual seat, at your actual desk and I didn't have a sea of faces staring at me waiting to learn, but, I still know what it feels like to sit in that seat to wonder…to question…to not understand. And although you may have hundreds of faces watching and waiting for you to figure them out, there is one face in your class that is familiar to me and I have had that same face looking at me waiting too. Waiting and expecting you to get it, to get him.
 
There was a time when, like you, I didn’t understand autism. A time when I didn't understand how autism impacted him in ways that seemed questionable. Does his new winter coat really “hurt” because of his sensory struggles or does he just not want to go outside? He can recite an entire movie, yet, he can’t tell me about his day, so is finding his words really that difficult or does he just want to watch Spongebob instead? Are changes in routine really THAT hard and he can't bear the thought of going to grandmas on a weekday because we only ever go there on weekends or does he just not want to give up Minecraft this afternoon?

Is it all really autism?

I was you. I was ignorant and as his mother, it’s shameful to admit, but, at times, I was a doubter. Yep, there, I said it and I’m betting if you haven’t said it, you have thought it. In fact, I was so skeptical at times that I used to ask the therapists, how do I know where autism ends and his stubbornness begins? The answer: you don’t.
 
There is no way to tell where my son’s autism begins and ends. Autism is not a continuous line with a start point and a stop point that allows you to see where it ends and where other traits, traits that may seem like stubbornness, laziness, carelessness, or even rudeness begins. Autism is intertwined in all that he is and all that he does. It does not define him, but, it is a part of him and there is no on or off switch. There is no way to really understand why one day he seems “checked in” and other days he seems “checked out” and because of that, my son wears a cloak of competence right over top of the five Hollister shirts he wears every week. That cloak can be suffocating to him and confusing to you.
 
How can he do a task one day and not the next? I mean, if he can read this book and write this essay, why can’t he read that book and write that essay? If he can spend hours focusing on Minecraft, but, can’t pay attention to your lecture on the Civil War for five minutes, is that autism or is he just apathetic? If he is mumbling or scripting softly to himself is his sensory system overloaded because the kid next to him wore too much cologne today or because he doesn't give a damn about finding the area of a quadrilateral? If I had the answer, I would be rich, my kid, and kids like him, wouldn’t struggle and you wouldn’t need to open a bottle of wine at the end of the school day.

Bottom line is I have to trust him, I have to believe him and I try not to doubt him because he is autistic and I'm not.
 
I will never know why things that were easy yesterday are hard today. Could it be the new socks he is wearing? Could it be the smell of the new floor polish the custodian used last night? Could it be your vibrant patterned shirt that is distracting him? Could it be the two hour delay that changed the schedule or the fire drill that disrupted his work? I don’t know, and honestly, he might not know either, but, because of that cloak of competence, it leads you to wonder…is it all really autism?
 
Don’t get me wrong, I have no doubt that there are times throwing out The A Word might benefit him, might help him take the easy path, because honestly, who among us doesn’t want easy the majority of the time, but, just like I have not really sat in your seat, you haven’t sat in his. And neither have I.

We have to trust him, we have to believe him, and we must try not to doubt him because he is autistic and we are not.
 
Many autistics do not approve of the puzzle piece as the logo for autism because they do not believe there is anything missing or puzzling about them. The logo was created by neurotypicals for neurotypicals. If you ask most people with autism, they think YOU are the mystery. And as a student, most probably don’t care if you figure out autism, they just want you to figure out them. A task that is easier said than done with a sea of faces waiting for you to get each and every one of them.
 
I don’t have the answers for you. Sorry. My kid might though. Rather than ask why he didn’t complete the assignment, ask what he might need to help him complete it. Rather than assume he is being lazy, ask if he didn’t understand the homework or did he just get sucked into killing more creepers in Minecraft and forgot to do it. You might get a straight answer, you might not, but, if you ask, he will at least know that in the sea of faces staring at you for 52 minutes, there is one face that is grateful you tried to really genuinely see him.
 
I was there once, in your seat, and some days, I still am. I empathize with you, I legitimately do. So, scooch over, and let me sit down. Maybe between my son, you and me, we can "get" him together, but, we have to trust him, we have to believe him, and we must try not to doubt him because he is autistic and we are not. As his mom, I am always here to help him and you, so, please don't ever hesitate to ask me how to get from there to here or to invite me over when you do open that bottle of wine. 

Thanks for listening, thanks for trying, thanks for teaching.

Ryan's Mom

I ignored the house phone when it rang. No one who really needs us calls that phone anymore. Then my cell phone rang, and since it was a local number I didn't recognize, I ignored it too. After all, it was Christmas break and my only goal was to hang with the family, eat cookies, drink wine and finish Season 2 of The Crown.

However, when the voicemail message alert popped up on my cell phone, I decided that even if I did want to see how Queen Elizabeth handled a remorseful Jackie Kennedy (even classy, grown up girls can be mean), I needed to check my message.

As soon as I heard the voice, I felt the hair on the back of my neck stand up. When a school official is calling over Christmas break you know they aren't calling to see if you got an Instant Pot for Christmas. Then I heard words like, "red flags", "teacher concerns", "out of the ordinary" and "worried" and that’s when the cold sweats began.

In a writing assignment, Ryan had written words that lead his teacher to all the words I just wrote above. I was literally trembling as I called the school administrator back. And as quickly as this nice man answered his phone, he was cut off and gone. I prayed after I yelled the word that rhymes with “duck” REALLY, REALLY, REALLY loud, that we truly were disconnected and that he didn't hear that expletive come so easily and freely from my mouth.

As I waited, hoping this nice man who was working over his break would call back this really sweary mom back, the worst case scenarios went through my head. As one fear lead to another, I sat on the couch willing my phone to ring and tried to calm myself down, but, the glow of the Christmas trees lights reminded me that any type of teacher or administrator calling over their sacred holiday break equals some type of big deal. Bigger than the deal Queen Elizabeth just made with the Prime Minister from Ghana on The Crown.

It only took 60 seconds for this school administrator to call me back, but, in those 60 seconds my brain went down the rabbit hole. Did he write about guns or bombs? I mean he spent all break killing creepers on Minecraft so it made sense. Did he script something that would be perceived as a threat? Did someone hear him script, “I have crippling depression” from his most favorite meme and think a call to Crisis Intervention was needed? My son has NEVER been violent or the least bit aggressive, but the rabbit hole is a place where only ugly thoughts creep in your head.

When the phone finally rang and I got the story, none of my catastrophizing scenarios came true. What this school administrator shared was sad, but, nothing like the scenarios I had created in my head. And after Ryan and I discussed it, Ryan’s words that were concerning to some, made sense to me.
 
As much as Ryan's words and his worries hurt my heart, I was so proud of Ryan’s ability to communicate his feelings and his concerns. What I wasn't proud of was my reaction. Damn it, I hate that rabbit hole.

Yes, the sense of panic with a call over Christmas break was somewhat worthy of alarm, but, to immediately go to such awful scenarios had me feeling shameful. I know my son better than anyone and there isn't an aggressive bone in his body, yet, I know when he scripts, he might not know the impact his words could have on people who don’t know him.
 
Whether it's on AWEnesty, my Facebook page or at an IEP Meeting, I beg and plead for everyone to not see the label, but, to see my son, yet, with one phone message and without so much as a backward glance at my son whom I know so well, I jumped both feet first down the rabbit hole and did exactly what I ask no one else to do, I saw autism first and Ryan second. And the guilt of it made me feel so ashamed.

Rather than wallow in my own shame and guilt, I decided to do something about it. I decided I needed to apologize to my son. After we discussed what had caused his teacher to be somewhat concerned and precipitated the phone call, I told him, "I was worried it was something else". Then when I told him about my trip down the rabbit hole he said, "Well, that's not a surprise since you over worry about everything."

Ryan's right. I do "over worry" about everything, like seriously, everything. So maybe my "over worry" to a holiday break phone call from school personnel and jumping down the rabbit hole wasn't quite so out of character for me. As for my son, who never disappoints me, he stayed true to his character too by pulling me out of the rabbit hole, as he has so many times before by being exactly who is meant to be.

He teaches me so much.

​Every. Single. Day.

Dear Mom I Have Never Met, but, Know Well,

Although we have never met, I feel like I know you. We may have never shared a glass of wine together, but, even without the wall that crumbles when you add some Cabernet, I believe that I know your deepest sorrows, your highest joys, your biggest regrets and the sometimes paralyzingly fear that envelopes you when you think of the future.

And sure, we may have never spent endless hours texting or face timing, but, in some ways I still think I know you better than some of your closest friends. Friends who love and support you and your child in the best way they can without ever walking in your shoes. I've never so much as stepped into your home, but, I have stepped into your shoes.

Even though I have never laid eyes on you, I know the look of relief that crosses your face when your child has been able to survive an unexpected change in plans. I know the enormous smile that reaches your eyes when your child allows you that extra cuddle or kiss and does not pull away when you stroke his head as you kiss him goodnight. I know the look of anguish that you try so well to hide when your child is rejected by his peers...again. I know the worry that creases your brow as your teenager spends another summer alone in his room. And I know the hope that creeps into your heart when you see your child make progress and think that maybe the experts got "it" wrong.

I'm familiar with the guilt when you sometimes wonder what could be and the gratitude you feel for what is. I know the indescribable joy of a successful haircut and the heartache of an unsigned yearbook. I know the regrets of the past, the awareness of the present and the fears of the future.

Damn, do you have time for another bottle of wine?

And although we may not have anything else in common, I know we share a common belief that our child is more than meets the untrained eye. We know our child can learn if we know how to teach him. We know our child can communicate if we learn how to listen to him.  We know our child can be successful if we learn how to support him. We share a desire for the world to see our child like we do. For others to not just be aware of Autism, the diagnosis, but, to be accepting of (insert your child's name here), the individual. And I know that regardless of what our mother tongue may be, we are advocating for our children in a universal language.

As much as I would love to share that glass of wine with you and get to know you better, I find comfort with each and every sip as I sit on my porch with only the summer crickets to keep me company, knowing that no matter what country or time zone we are drinking our Cabernet, Merlot or Chardonnay in, we are not alone. For that, and for you, I am eternally grateful.

Thanks for always being there,

Ryan's Mom

I spent over an hour looking for it. I searched in the kids' closets, in the abyss that we call the basement (where the once beloved toys go to await a yard sale or a trip to Goodwill) and in our “formal" living room” (where the toys that are still occasionally played with remain). I was determined to find the object of my search. Imagine if I were as unwavering in my cleaning and organizing as I were in my searching how much easier it would be to find said object, or any object for that matter!

I refused to give up I because I knew it was somewhere.  “It” was a bag of wooden toy blocks tucked away and long since forgotten with two teenagers and a preteen in the house. My best friend’s 1 year old was coming to play and as her "auntie", I was determined to have a fun playdate and that meant finding the missing bag of blocks among the forgotten dolls, dinosaurs and Legos.

Then, finally, I saw the purple handle sticking out from under a pile of mittens that my teenage wannabe drops on the floor due to her 8th percentile height that leaves her unable to reach the mitten bin on the top shelf. I pulled it out, scraped off the dog hair and dust bunnies (sorry sweet Peaches) and relished in my victory and dogged determination at my discovery. I put the bag with the other toys I dug out (literally) and finally went to bed.

The next day, when my friend’s beautiful girl came to play, I was ready. At first her inquisitive eyes and grabby little hands were set on the various toys that lit up and made noises. She went from item to item pushing buttons and clapping each time she pushed the magic button, so proud at her amazing discoveries. My goodness she is a delight!

As toddlers are wont to do, she quickly left any and all toys behind and went to the cabinets and drawers in the kitchen. Since my days of child proofing are long gone, I wanted to distract her with something that would not poison her. "The blocks!"

I quickly went to the bag and dumped the blocks on the floor as I sang out her name. I had no idea the impact those scattered blocks all over my family room floor would have on me. In an instant, a long forgotten memory that was tucked as far away in the darkness of my brain as the blocks were in our hall closet, hit me. Hard.

The benign wooden blocks, in various colors and shapes scattered among the light up toys, took me back 12 years. There in my memory, along with the blocks, was my son, aged 3, on the floor playing. Unlike my bestie’s daughter, he was not picking up the blocks and making sweet block music, nor was he crashing down each and every tower I built, instead he was rolling all over the blocks that lay scattered on the floor.
 
Ryan would scatter the blocks on the carpet, almost making a trail of blocks, then he would roll on top of the blocks from one end of the pile to the other, seeking sensory input that his body was unable to receive in the way you and I can. From the sharp, pointy triangles, to the smooth half-moon circles, Ryan did not discriminate. Each block provided different sensory sensations to his body, and by the giggles and smiles it was clear that those sharp and smooth edges felt glorious. 

At first I thought it was funny, but, the more I watched him, the more it worried me.  I knew this was not "normal". I remember trying to redirect him. "Ryan, look what Mommy built!" "Do you want to knock it down?" But, my son, who at times appeared deaf to his name, just continued to roll away. Not caring at all about what was the "right" or “normal” way to play with wooden blocks, Ryan found his way, and his was was “right” for him.
 
My revere was broken when my bestie's daughter yelled, “wooo” as the next block tower crashed to the ground while she clapped happily at this fun game of cause and effect. Then she picked up two blocks and clacked them together (blocks are quite musical). While she enjoyed her musical blocks, I built another tower and waited, and sure enough, CRASH, she toppled the blocks to the ground again. As I applauded her victory, in what I once believed was the “right” way to play with blocks, I longed for the chance to go back in time with my young son and roll over those blocks letting him know that his way was “right” too.
 
Yeah, I know, beating myself over the head with a bag of blocks isn’t going to change what was, but, those blocks acted as a reminder to allow my son to “play” in a way that is comfortable for him. For example, my suggestion to have an end of the year pool party for the cast in the musical as a way to increase his social opportunities, may seem “right” to me, but, it clearly does not seem “right” to him. He has no plans of playing that way. There are other ways to engage him socially without making him feel nervous and overwhelmed.
 
As a parent loving a child with autism, there is a fine line between showing your child what is “typical” and making them feel and be someone they are not.  Just like I crossed the line with those stupid blocks all those years ago, I know I have crossed it many, many more times since then. I hope that my son knows that just like blocks don’t come with instructions on how to play “right”, parenting doesn’t come with instructions either and sometimes we get it wrong.
 
Over the years, my son and I have taught each other how to play and neither way is “right”, sometimes, how we play is just different. My bestie’s beautiful girl may have played with the blocks just like I expected her to, however, when she climbed on top of the little toy table (which I also found in the bowels of my basement) that I set out for us to color on, I couldn't help but smile at the irony. This adorable neurotypical toddler did not play with the table "right", after all, tables aren't for standing on, however, climbing on top of that table felt “right” to this little daredevil more than scribbling with a tasty crayon she'd preferred to chew on than draw with. And in her mind, and mine, she was not wrong.

"Play:  engage in activity for enjoyment and recreation rather than a serious or practical purpose."

Yep. Guess I missed that twelve years ago.

​My son Ryan was diagnosed with autism ten years ago. Wow, ten years…that doesn’t even seem possible. In some ways, it feels like a loooooong time ago and in some ways it feels like just yesterday I was sitting in that psychologist's office wondering if her garbage can was full because I was gonna puke in it.

Ten years...it's a lifetime, it's a blink.

I remember the years of worrying, Google obsessing and watching for every, single sign Google told me to look for prior to that ten year diagnosis. Why is he doing that? Why isn’t he doing this? Why does that freak him out? Why doesn’t this freak him out? Why is he alone? Why is he angry? Why is he crying? Why won't he eat? Why is everything so hard? Why, why, why? Little did I know, all those question would be answered with a six letter word…autism...and those six letters would have an impact on him and on me that I could have never guessed ten years ago.

Ten years...it's a lifetime, it's a blink.
 
There are still days that I ask why, but, mostly I ask what. What do we need to do to get from here to there? What supports need to be in place to help him succeed? What can I do to help him succeed? What does he need to do for himself to be successful? What can we do to help others? What is sometimes as difficult as why, but, I have learned that ten years in, many of those answers aren’t up to me alone like they were when he was five, they are up to him and that has been a tough lesson for both of us to learn and accept.
 
Ten years…it’s a lifetime, it’s a blink.

These past ten years, Ryan has come so far and so have I. I could write a list of ten thousand things I have learned in the ten years since we first heard The A Word, but, you wouldn't probably take the time to read all of them, so, I've decided to share with you the cliffnotes version of those lessons.

So here it is, ten things I have learned these past ten years while loving a child with autism:

1. It’s not about me. Sure, his autism has an impact on me, and our family, but, what he needs, what he wants, what makes him happy is about him, not me.
2. It does matter what you call "it". For years I had therapists say, “It doesn’t matter what you call it, just getting him the support is what matters.” I have learned that what you call “it” is exactly what helps get that support started in the first place, so yeah, it does matter what you call it. More importantly, one day it will matter to him what “it” is and give him a better understanding how “it” has impacted his life.
3. The word “friend” doesn’t have to be another dirty F word as long as you listen to how he defines that word.
4. “Different, not less” really is true, but, you have to see it, feel it and believe it or he NEVER will.
5. The debate over “a person with autism” or an “autistic person” is not up to me, you or the autism community, it is up to each individual with autism, so, if the individual is able to tell you what they prefer, ask, don’t decide for them.
6. Alone and lonely can sometimes by synonymous and sometimes they can be very, very different. It may depend on the day, the moment and the circumstance. The only way to know, is to ask.
7. "Lack of displaying emotions" or displaying emotions in a way YOU don’t expect, does not mean someone with autism is "lacking" emotions, how they demonstrate and display their feelings may be different, but, their feelings are never less.
8. Never say "never" and never believe anyone who tells you "never".  I mean it, never.
9. There are many beautiful ways to communicate feelings without ever uttering a word.
10. Autism is not a one way street. It is not only the job of autistic individuals to learn how to adapt to "our" world, it is also our job to understand and accept that although individuals with autism may see and interact differently in "our" world, they are just as entitled to be a part of it, free of judgement and condemnation.  

​
Ten years, it's a lifetime, it's a blink.

I never found out if that psychologist's garbage can was full or not ten years ago, because although I felt like puking, I didn't. I guess somewhere, my heart took over both my brain and my stomach and realized my son needed me more than my churning lunch needed to see the light of day. That's not to say there weren't ten thousand times where I failed him, where I was selfish, misguided, tired and just plain wrong, but, he always brought me back. He always guided me where he needed to go next, just as I know he will in the decades to come with 10,000 more lessons to learn.

I look forward to learning more as this teenage boy transitions to adulthood while I watch this beautiful transformation with an open mind and an open heart. Thank you Ryan for ten AWEsome years and here is to many, many more.

Ten years, it's a lifetime, it's a blink.

I think I will try and prop my eyelids open for this next decade.