​What does kindness look like? We know kindness can "look" like many things. A kind word, a nice gesture, a charitable contribution, or just showing up. An act of kindness is  much easier to discern than a kind person.

It’s hard to know who to trust, who we can count on, who will have our backs or who will betray us. It would be nice to have some type of radar that immediately goes off warning us to stay away from THAT person. To some extent we do, especially in extreme circumstances. Walking alone on a dark street at night and someone stares at you a little too long, it tends to make your radar go off. You may feel the hairs on the back of your neck stand up as your steps quicken because you just got "a bad feeling”, but, in normal everyday life, in everyday situations, our radar may not signal us.
 
The friend you thought you could always count on, one day ghosts you. The spouse you thought would never cheat, blindsides you with, “there is someone else”. The boss who always had your back until one day they didn’t. Of course hindsight is 20/20, but, regardless we always ask, "Why didn’t I see that coming?" For many people with autism, seeing it coming can be even more challenging than it is for us neurotypicals.
 
My son recently asked me why it takes so many trials to figure out who is kind. He wondered why we can’t determine who we can trust, who will show up, and who won’t hurt us immediately. “Why can’t we figure that out in one trial?” he asked. Or better yet, why can’t we just know "by looking at someone" if they are kind? A built in kindness radar, wouldn’t that be something?
 
It broke my heart to tell him that we usually can’t tell by just a look and that it often takes time to determine the different levels and types of kindness, some are authentic and some are not. Some kindness is all about the receiver and some kindness is all about the giver. There is the, I am being kind because I need/want something from you. And the, I am being kind because my mom told me I have to. There is also the, I am only kind to you when none of my cool friends are around. And the one he struggles with recognizing the most is the, I am being kind because I feel sorry for you.
 
But there is also good kindness. Really, really good, genuine kindness. Kindness you can count on, that is authentic, that is real and that always, always shows up. There is the, I am being kind by putting your needs above my own. And the, I am being kind because I love you and I want to make you feel that love. There is also, I am being kind because I want you to be kind to me too.  And last, but, certainly not least, there is your very basic, I am being kind because it feels better to be nice than to be an a**hole. My son got it right though, it takes multiple trials, it takes time, it takes getting hurt, being betrayed, learning from our mistakes and it takes risks to determine the real versus the phony, the moment versus the long haul and the selfish versus the selfless, in other words, it’s not easy. And that is why my son spends most of his time alone. He wants a kindness radar and I can’t give him one.
 
We talked about the people who have shown him kindness and what that felt like. The theme was consistency, love, safety, support, concern and seeing him, really seeing him and accepting him just as he is. I told him that although he may not have a radar, he has these positive experiences that can act like a bit of a radar for him. I also reminded him that kindness is a two way street and that in order to get kindness you have to give kindness and to do that, you have to take a risk by letting people in, and this is where he falters.
 
My son's very black and white mind is terrified of that risk, determining real kindness from phony kindness can be a very gray area. Whether it’s how a new shirt will feel or how a new food will taste, or if this person or that person is kind or will hurt him, he wants to know how it’s going to turn out. He wants a kindness radar. My God, don’t we all?
 
I continue to hope that one day there is someone, some potential friend that will trigger a good internal feeling, his own kindness radar, so to speak, that will allow my son to take a risk so that he can feel confident in knowing what it means to give and get kindness because even though it's dicey and there are no guarantees, kindness (and friendship) really is worth the risk. 

​I could feel her emotions in a text. Not because she included 32 different emojis, that let me know exactly the range of emotions a visit from her autistic son’s caseworker to her home made her feel, and not because her text was in all shouty CAPITALS, and not because I was sitting across the room from her and could hear how hard her fingers were tapping on her phone screen. No, I knew what she was feeling because I’ve felt it too. And I’m betting you have as well.

The caseworker is required to stop by every six months to make sure my friend’s son still qualifies for services, services that were initially started based on the score of an IQ test created by a neurotypical, verbal human a bazillion years ago. The range of emotions that comes when someone, some stranger, some “expert” puts a check next to a box that they believe your son or daughter fits in, well, you don’t need emojis or shouty capitals to know the range of feelings that box evokes.

My friend’s son and my son both have autism. How autism impacts their lives is different in some ways and similar in others. First and foremost, they are both incredible human beings. Incredible. My son, however, is verbal and considered “high functioning” and my friend’s son is non-verbal and most would consider “low functioning” which is where this boy and his mother both cry bullshit. And from a mom whose son may seem “better off”, I cry bullshit too.

I know that we put people in categories for various reasons, mostly so we can sort them out, get a picture of who they are, what they do, where they came from, how they self-identify and who they love by checking a box under categories for items like race, gender, sexual orientation, ethnicity, occupation, etc, but, trying to group a human being by their level of functioning is so ambiguous, so subjective and so unfair and thus so goal limiting, it is downright ludicrous. We cannot sort out and put humans in a category, a box, if we don’t even know how or what to ask to determine who they are, how they think, and where they “belong”. If we have yet to accurately sort out how their brain functions, how can we sort their brain functioning into a pre-determined, categorized box?

How are we to know my friend’s son’s functioning level when we have yet to ascertain how his incredibly beautiful mind works? And if a boy is so extraordinarily in tune with his senses, his surroundings and his people, how can we not see THAT as “high functioning”? For someone who is non-verbal and unable to communicate as society expects, to ask that person to answer questions on a survey or on an IQ test designed for people who are verbal and who process information the same way as the survey designer just so we can fit them into some predetermined box, of course society will not deem this young boy’s functioning level on par with those who can communicate verbally or who score a certain level on an IQ test. We may not have found the box my friend’s son belongs in because there is no one size fits all box. And if a person is told, “I’m sorry we have not yet found the right box for you, so we will just stick you in this box with others who are kind of like you”, how will that individual ever believe there is a different box, a better box, a more fitting box he or she belongs in? I cry, "bullshit".
​
And for my son who is “high functioning” that puts him in a box he doesn’t always fit in either. Sure, he can do trigonometry and write a beautiful essay on a poem he read, but, he still struggles with social nuances, social communication, disrupted routines and vague language, but, because he is placed in the predetermined “high functioning” box (by neurotypical people who process information and define intelligence by a set of questions and answers), when my son doesn’t perform well in areas where he struggles, he is deemed lazy, uncaring or disingenuous and I cry, "bullshit". Again.

I know that we will always have a need, a desire to understand humans by categorizing them, labeling them and finding where they fit, but, we have to do better for those who don’t "fit" in our preconceived ideas of intelligence or functionality.

We have gotten better in some areas. We now recognize that not all individuals identify with the boxes of “male” or “female”, “gay” or “straight” because somewhere along the way those individuals who did not feel as though they fit in a predetermined box cried, “bullshit” and people started listening. It starts with a cry, a shout, a step. It starts with listening.

This is my cry of bullshit. This is my shout to please stop trying to put individuals in a functionality box until we explore every avenue of the various ways humans function. This is my step to get others who believe this to advocate for yourself, your child, your adult son or daughter. This is me asking people to listen. Please.

After the caseworker checked the box where she believed my friend’s son fit, my friend looked at her son and told him this:

“That test means nothing and you are the smartest little boy I know and my hero which makes you extra awesome.” 

In other words, she cried “bullshit”.

It’s that wonderful, busy, stressful time of year, the holiday season. For many of us, the excitement and joy of the holidays may feel like the most wonderful time of the year, but, for individuals with autism who struggle with change, sensory sensitivities, and social situations, the holiday season feels anything, but, wonderful. Individuals with autism can feel overwhelmed, anxious and withdrawn. So, how can you help someone you love with autism make the holiday season a little more friendly? Try a few of these suggestions:
 
Holiday decorations are a big part of the holiday season for many families, but, for individuals with autism, who often crave routine and sameness, moving the chair in the corner to make room for the Christmas tree may be very upsetting. Include the family member with autism in the decorating process by giving them a little control over where the decorations go.
 
Food often takes center stage during the holiday season, however, for people with autism who may have a limited diet, those holiday meals can be overwhelming. Make sure to include one thing the person with autism enjoys so they can feel part of the celebration.
 
If you love the smell of pine candles and the cozy feeling a basket of cinnamon scented pinecones gives to your family room, keep in mind the sensory sensitivities of many individuals with autism and resist the temptation to fill your room with all those holiday scents.
 
For many people, the holiday season includes gift giving. Give family and friends some sensory friendly gift suggestions for your loved one with autism and if opening gifts and not knowing what is inside makes an individual with autism anxious, have them open their gifts in a quieter area on their terms and in their time.
 
If any of your family holiday traditions overwhelm an individual with autism, ask family and friends if some of those traditions can be changed and if they are resistant, maybe it’s time to start your own family traditions.
 
The best part of the holiday season is spending time with those we love. Making sure all members of our family can feel this love is the best gift you can give this season.

​The turkey is coming, the turkey is coming! And my son could care less. It’s almost Thanksgiving, and for many, this is the most cherished of all the holidays. Family, food, parades, football, shopping and no school/work, so, what’s not to love? Well for my kid, change. And Thanksgiving is full of not your run of the mill day to day change.

Last year, my sweet sister hosted Thanksgiving and she made sure to check in on what Ryan needed. My heart melted when I walked into her kitchen and saw that along with the turkey, the stuffing and the mashed potatoes, there was a pot of water waiting to boil my son's Velveeta Shells and Cheese, which is HIS Thanksgiving Day tradition. With all this preparation and all this love for my boy, he still had a meltdown because, yep, you guessed it, change. You see, this was our first Thanksgiving at my sister's house and I didn't think to give Ryan an assigned quiet place when it all got to be too much, so when it all got to be too much, he shut down.

He (we) got through it and went on with our day, however, Ryan wasn't truly himself until we pulled into our driveway and he ran up to his room and began happily scripting the lastest meme he loved. Back to his space. Back to his routine. For years, these less than stellar moments would plague me for days, but, not so much anymore because I try so hard to not compare my Thanksgiving day cornucopia to yours.

The cornucopia has become symbolic with Thanksgiving. Many tables will be adorned with fall colors, fine dining ware and perhaps in the center of it all, the cornucopia or The Horn of Plenty. After all, Thanksgiving is the time we are to be grateful for the abundance of good we have in our life. Our cornucopia is said to be "overflowing".

There was a time though, that I cursed the cornucopia, feeling that the cornucopia at my Thanksgiving table still had plenty missing. Yes, I had three healthy beautiful children, a great husband, supportive friends and family, a job I loved and a beautiful home, but, all I could see was what was missing. It was hard for me to see the abundance of blessings in my life back then.

All of my friends' cornucopias were filled with play dates, activities, kid parties and on Thanksgiving, turkey, so, without all those things for my son, my cornucopia felt kind of empty. When your child is autistic, those things do not come in abundance, but, so many other things do, if you are able look past what you think is missing, you will see all that is there. My goodness, how did I not see my "overflowing" cornucopia?

Looking back now, I'm ashamed of all I didn't see. The challenges my son overcame, the fears he fought head on, the progress he made and the love he gave to me in abundance. In abundance. I spent so much time focusing on what I felt was missing, not what he felt was missing, that I was in fact, the one who was missing out on so much.

It took me a few years to see that not everyone's cornucopia is filled with the same blessings. Blessings come in different shapes and sizes, but, they are blessings none the less. If I could go back in time, I would grab that cornucopia and whack the old me over the head with it, but, since I can't, I will call my sister and thank her again and remind her she does not need that extra pot this year, as we will be at my in-laws this Thanksgiving with our box of shells and cheese in tow.

We will be sure to have a quiet place for Ryan along with his Velveeta Shells and Cheese and whether or not my mother-in-law adorns her table with a cornucopia will make no difference to me, because I know how blessed I am on Thanksgiving Day and every other day of the year. Yes, my cornucopia is indeed overflowing and since my kid doesn't eat turkey and stuffing, my plate will be overflowing with his share too.

As I get older, the details of my memories seem to blur a bit. I always swore I would remember every detail of my kids’ childhood moments, but, there are some moments my husband and I get confused. Was it this kid who said "bdozer" instead of bulldozer or that one? Which kid puked in the middle of Dairy Queen? Which one potty trained early? I swear we can’t agree on any of them. I know this is a normal sign of aging as my brain cells are slowly sloughing off, but, some things I think I have tried to forget. There are some moments that are painful to remember, so, my brain has decided, "screw that, let’s not think about that anymore". Thank you brain for trying to protect my heart.

But then something triggers that deep buried memory. A word, a sound, a photo and out of nowhere, that memory is as crisp and clear as if time transported you right back to that moment, kicking and screaming all the way. No blurred lines whatsoever and the heartache that went with that moment takes your breath away.

My sister and best friend took their little loves to see the “real” Thomas the Tank Engine. Later that day, they both posted photos. And in the photo of my great nephew staring at Thomas, a 14 year old memory came crashing through the recessed part of my brain to the forefront and there was no way to send it back. God I tried.

It was a different boy though, it was my Ryan, staring at Thomas as my sweet great nephew did, but, this was not the “real” Thomas, this was a picture of Thomas on a T-shirt. We were in Ryan's bedroom and I told him I had a surprise for him. I pulled the shirt out of the bag and he just stared at it. I gave myself a pat on the back for scoring this simple, blue t-shirt with a smiling Thomas on it because Ryan LOVED Thomas trains, videos and books, so, I assumed he would love a t-shirt too. I was wrong. So very, very wrong. The pat on the back I had given myself quickly turned into a punch in the gut.

Ryan stared at the shirt terrified, saying “no, no, no” over and over again. I thought he was being ridiculous, so I tried to put the shirt on him. It was as if that shirt had thorns all through it. As I tried to put the shirt on, yelling, “it’s just a shirt”, Ryan tried to pull the shirt off screaming, “no Thomas, no Thomas”. There was so much more to this moment than a $16.00 Thomas shirt.

For Ryan, Thomas, or any character he loved on television or story books, did not belong on a t-shirt. His overly sensitive and logical brain didn’t understand how Thomas could make the leap from his television screen to his shirt to his body. For me, it was just one more sign that something was “wrong” and somewhere in my mind I believed if he wore that damn shirt everything would be right and my son would be ok. In the end, the shirt lay crumbled on the floor where I lied next to it in tears. Ryan happily ran away to watch Thomas on the television...where Thomas belonged.

Eventually the memory slowly slipped away to the abyss in my brain where I try to keep these moments buried, and I allowed the guilt of the moment to wash over me because I have learned over the years that’s what I need to do to move past it. I need to ride those awful feelings of fear, loneliness and guilt from the past in order to transport me back to the present where I am more aware, more educated and more in tune with my son and his needs. After I arrive back, I take a moment and share my screw ups with Ryan and apologize for my ignorance. He is usually just annoyed that I’ve interrupted whatever game he was playing, but, Ryan humors me and listens to my guilt ridden apology and never lets me forget that it’s ok because I “don’t do that anymore”. Then more guilt consumes me for being gifted a kid that most days I don't think I deserve. 

As parents, we all screw up, it’s sort of our rite of passage as we continue on this journey of parenthood, but, when you have a child with autism or any other kind of disability, the screw ups seem magnified, in our heads, not in our kids. 

So, keep messing up, keep remembering, keep apologizing, but, mostly keep trying, that's what our kids will always remember, that we never gave up on them or ourselves.

With the end of summer quickly approaching, most parents have both a sense of relief and dread. Usually by August, both kids and parents are ready for the routine that school brings, but, with the start of a new school year, there is typically apprehension about what the new year might bring. And if your son or daughter has autism, that apprehension might just be over the top. New teachers, new classes, new schedule is a whole lot of new, and until kids get in the swing of things, new can be incredibly overwhelming. Here are a few ideas that might alleviate some of that apprehension and help prepare your child for a successful start to the school year:

1. Go to the school a week before classes begin and visit your child’s classroom. If they have multiple classes, ask the school for your child’s schedule in advance and walk through the building following the schedule until your child feels comfortable with the routine.
2. Request a meeting with your child’s teachers so your child can meet their teachers before the first day of school and the teachers can learn about your child’s strengths and struggles.
3. Make sure the teacher knows weeks before school begins about any special accommodations your child needs. If they have an IEP or a 504 Plan, ask the teacher if they have received and reviewed it. Start that open communication before the school year begins.
4. If your child needs new shoes or clothes, buy them in advance so your child can get used to the feel of the clothes before school begins.
5. Contact the school’s transportation department and find out the bus schedule and the bus driver’s name. Ask if you and your child can meet the bus driver before the first day of school.
6. Create a social story for the first day of school and use your child’s actual teacher’s name and room number as well as real photos of the school so they can familiarize themselves with what to expect.
7. Ask the teacher if he/she has a visual schedule with the school day routine and if they don’t, ask if they can create one or offer to help make one for them.
8. Meet with the school nurse, the guidance counselor, the cafeteria workers, the front office staff and anyone else who might come into contact with your child so they get to know your son/daughter too.
9. Remind the teacher that "if they have met one person with autism, they have met one person with autism" and that your son or daughter is not THAT person, so, fill them in on who your child is and isn't and help eliminate stereotypes before the first day of school.
10. Get a big bottle of wine. Not for your kid, but, for you. The first month of adjustment is always a doozy for your child and for you. Wine helps.

Good luck to all the kids out there! Wishing them, and you, a happy, successful year full of acceptance and understanding.

"Bravery: Knowing the world doesn't always understand you, but, going out into it anyway."~The AWEnesty of Autism

Wiki defines risk as “a situation involving exposure to danger.” Most of us want to avoid danger. An Enter at Your Own Risk sign posted next to a rickety old bridge, might make most of us non-thrill seekers avoid a possible plunge to our death, so, we find another way to get where we are going. My son Ryan is a practical, non-risk taking guy and that is why there is no way he would cross that bridge. He would absolutely take a safer, alternative route and skip the bridge (and the risk) altogether.

Last week, when we were talking about friends and his desire to be “anti-social” as he calls it, I asked if that’s what he wants or if that’s what is easier. He took a minute to gather his thoughts. "I don't know if it's worth the risk," he said as he stared out the car window. My heart felt both happy and sad.  I was thrilled that he was able to articulate his feelings so well, and sad that at almost 17, my son doesn't understand the joy and wonder of what it means to have, and be, a friend. To my son, trying to make a friend, feels almost as dangerous as that rickety old bridge, so, he finds other ways to get where he needs to go.

I tried to explain to Ryan that opening yourself up to friendship does make you vulnerable, but, having someone to confide in, to stand by you, to understand you and to love you, is worth the risk. Not ever really having that kind of friendship experience, he wasn’t convinced. I tried a different approach.

“Look at all the risks you have taken that have paid off. Musical theatre, select chorale groups and music camp.” Still staring out the window he said, “That's taking a risk at something I am good at. I’m not good at people.”

Understanding people and knowing who to trust and who is worth the risk is like crossing that rickety bridge with a blindfold; dangerous, scary, uncertain and in his mind, not worth it. Maybe this is why in most social settings he finds an alternate way around. Sitting alone, avoiding parties, not staying overnight at music camp and spending as much time isolated as he can, helps him to avoid the dangers of social blunders, language mishaps and misreading the emotions of others. One wrong mistep, one weakened board and down he goes. Crossing that bridge is just not worth the risk.

At least not yet.

My son's words struck my heart, and sat with me the rest of the day. I was overcome with both sadness and pride. Sadness that making a friend feels so risky to him and pride for not only his ability to recognize the risk of opening yourself up to someone, but, also that he felt safe enough to open himself up to me.

​Even though my son knows this bridge is VERY OLD (he points out my gray hairs regularly), he knows I am reliable and will always hold him up. One day, there may be someone on the other side of that bridge that compels my son to ignore the Enter at Your Own Risk warning and he takes a risk and crosses that bridge, but, until then, I will take his hand and help him find another way around.

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!

​You know how we have those moments that no matter how much time passes we know we will always remember, not just the moment, but, everything about it? Where we were, what we were wearing, who we were with, etc. The day we heard the word “autism”, I remember everything about that moment. The smell of the rain that had just fallen, the shirt I was wearing that was sticking to my back due to the warmth of the day and my anxiety, the location of the empty garbage can in the psychologist’s office that I could puke in if necessay…I remember all of it. And I also remember thinking later, mostly because I was uneducated, I was scared, and I was in new territory, that there would probably be very few moments in my lifetime that would cause me such heartache and worry than that moment did.

Well, I just had another one of those moments (in my kitchen, on a cold day in April, wearing a Shenandoah University sweatshirt, with Ryan) and it hurt my heart so much more than that moment almost 13 years ago. The moment began with these words: “And this year I'm not going to be so autistic”. The words came from my beautiful son’s lips as he smiled with pride at the thought of not being "so autistic" and I was sickened looking for that psychologist’s garbage can again.

We were talking about tech week for Ryan’s HS musical rehearsal. Two of the rehearsals would be anywhere from 8-10 hours long, so, that meant they would run through the dinner hour. Of course, dinner was provided for the kids, but, since Ryan has a limited diet due to his texture sensitivities, I take dinner to him. Last year, we got the timing off and his milkshake was melted and his burger and fries were cold, and he was terribly upset, so I had to go get meal number 2. Some moms said to me, “Wow. You are a better mom than me, I wouldn’t have gone back twice”. I’m not a “better mom”, I'm just a mom traveling a different path than those moms.
 
In order to avoid another mishap like last year, Ryan and I were in the kitchen trying to come up with a plan, discussing different ideas for meals and how we could time it better this year when "the moment" occurred and those words were spoken with such pride, “And this year I’m not going to be so autistic.”

No. Just no. No, no, no, no. Dammit, NO!

Trying not to be “so autistic” is not something my son should have to ever strive for and saying it should not make him smile and feel some sense of accomplishment. Yes, it's ok if he is proud that he is more flexible, or takes pride in advocating for himself, or is pleased that he is planning ahead a little better, or feels courageous enough to try a new food, but, he should never have to feel good about being other than who he is...and being autistic is intrinsically how he sees, feels, understands and interacts with the world.
 
Back when Ryan was officially diagnosed, it was under the DSM-IV, so his actual diagnosis was Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). “Pervasive” is the word you must understand. It means that autism impacts Ryan's neurology and how Ryan sees and interacts with the world. Autism is prevalent and inescapable in all areas of his life so he should never have to feel like he can be more or less autistic. His neurodiversity is an inherent part of his identity and he cannot be separated from autism any more than he can be separated from the color of his skin. He cannot separate how he exists from who he is and he should not ever think he has to.

Do most of you women out there wake up regularly and think, “Today I’m not going to be so female” or do you just get up and go about your day being female? Have any of you guys ever decided when the new year rolls around that this is the year you are going to “not be so male” or do most of you dudes start the year off with a new plan to be healthier, happier, but, still inherently male? The gender you identify with is intrinsically a part of who you are and that’s what makes you, you, so trying not to be who you are would be terribly uncomfortable and probably not something most of us even think about and certainly not something anyone expects of us.
 
For those of you who may not believe that autism is pervasive and intrinsic to the autistic person and see autism as a “disability”, let’s look at it this way then, do we expect people who are visually impaired to decide this is the year, this is the day, this is the moment that they should try and see better? Does the world think people with a physical disability should be less physically disabled today than they were yesterday? These individuals can’t look at their parents and say, “And this time, this year, this day, I’m not going to be so physically disabled” and Ryan and other individuals with so called "hidden disabilites" like autism, shouldn’t have to say that, try that or think that either.  No one's disability or label should "define them", but, for the autistic population, their neurodiversity impacts all aspects of who they are and how they go about living their life and they should not ever have to take pride in trying to be someone else.
 
The reason Ryan's words, “And this year I’m not going to be so autistic” were such a profound moment for me was because in that moment I realized that there is still so much more understanding and acceptance that is needed, both for my son and the rest of the world. His pride in trying not to be "so autistic" is not for him, it's for the neurotypical world who still fail to accept and respect neurodiversity. No one has the right to deny who my son is and he should never take pride in trying to be more or less "Ryan". Hopefully, the more we educate others, the more accepting the world will become and then maybe one day Ryan will be more accepting of his neurodiversity and never feel like he shouldn't be "so autistic" when his milkshake melts and his fries are cold because honestly, as someone the world deems "neurotypical", cold fries piss me off too.