To Those Who Do Not Take My Son's Sensory Issues Seriously (you know who you are),

Yeah, he's a picky eater. Yeah, his diet isn't great. Yeah, he knows Cinnamon Toast Crunch Cereal is not a food group. And yeah, even though he is hungry, he's still not going to eat your (insert anything here that is not Cinnamon Toast Crunch Cereal, Vanilla Oreos, Velveeta Shells and Cheese, pizza, apples or Pringles). It's not because he is "spoiled". It's not because we "give in to him". It's not because we "always let him win". And it's not because your mac and cheese sucks, it's because he has sensory processing difficulties and he is NOT going to eat it....not today, not tomorrow, not next Thursday. I hate to break it to you, but, it's not about ME, it's not about YOU, it's about HIM.

Although you may think, "He will eat it when he gets hungry enough", chances are, he won't. And as a mother who understands him, advocates for him and loves him, I'm never gonna test your ignorant, callous theory. Unless of course I can try the theory out on you first? Would you be willing to try "just a bite" of some rotting food out of a dumpster on a hot summer day? Because, no offense, that's exactly what your mac and cheese smells and tastes like to him.

These sensory struggles come as a result of his autism, not as a result of poor parenting or because he is a "stubborn, strong willed child". His sensory system is on heightened alert because his brain processes his sense of smell, taste, sight and touch differently than you and I do, so not eating your mac and cheese is not meant to offend you, it's meant to protect him. Eating what he is use to, what he knows he likes, makes him feel safe. Even though your mac and cheese may have won you a prize at the local ladies auxillary function, your mac and cheese to my son is an unpredictable threat.

When he was little, he would yell, "no, no, no" when an undesirable, new, threatening food was placed before him. Now that he is older and has found his voice, he is better able to explain how threatening your mac and cheese is to his sensory system. "My brain and my body will not let THAT food go in my mouth." It doesn't matter if it's a stinky, hard boiled egg, a delicious smelling, warm and gooey brownie, or your award winning mac and cheese, his brain and his body say "no" and I respect that, because I respect him. I just wish you would.

If perhaps you would read some of the articles, blog posts, and books I have suggested to you so that you can try and understand him and his sensory system better, maybe you would spend less time fighting him and more time relating to him. You might see how far he has come and not how far you believe he still has to go. You may see HIM and not your untouched mac and cheese. If you just tried to "get it", then maybe next time you are zipping through the grocery store you would just pick up a box of Velveeta Shells and Cheese and toss it in your cart rather than complaining about the wasted mac and cheese you made from scratch. The mac and cheese you believe "tastes so much better" than Velveeta's and the mac and cheese he refused to eat the last time he was at your house. And the time before that too.

To you and the ladies of your local auxillary, your mac and cheese may be "to die for", but, for Ryan and people who struggle with sensory processing, they believe your mac and cheese might just be what they die from. Don't take it personally. In fact, just take yourself out of the equation altogether because it's not about YOU, or your award winning mac and cheese, it's about HIM.

Next time we come to visit, just serve the Velveeta Shells and Cheese not because you are "giving in", "spoiling him" or "always letting him win", but, because you love him, respect him and are trying to understand him and his sensory sensitivities. Maybe by taking the time to educate yourself (if you actually read this) about this amazing person you love, you will be more aware, more accepting, and more understanding. Perhaps then, you will finally see HIM and not what is or isn't on his plate.

Sincerely, 

Ryan's Mom, aka, "The Enabler"

Last week, Autism Speaks shared one of my blog posts, well, actually, it was more like Ryan's blog post since it was his voice, his words. There were lots of lovely comments from parents who "got it". Parents who have had time to recognize that autism is not who their child is, parents who understand that so much more lies beneath that label. There was one comment though, two sentences and ten words, that pierced my heart like no others. "My son was diagnosed today. I needed to read this."

Those ten words instantly transported me back in time. I am in the psychologists office, tissues shoved in my face, heart in my throat. I can still feel the cushion of the chair I was sitting in. I can still smell the dampness of the psychologist's office from the rain that had fallen hours before we arrived. I can see the psychologist's mouth moving and I remember how badly I wanted her to just shut up. I wanted to cover her mouth so she would stop talking, so she wouldn't utter the words I spent years fearing. I wanted to grab my best friend Denial's hand and get the hell out of there. I can still see the psychologist's professional composure as she said those words, yet, I can also still clearly see the mother, and not the doctor, in her eyes as she struggled to say them.

As I read this mother's words on my blog post, I felt the same kick in the stomach, the same tears searing the back of my eyes and the same fear I felt all those years ago. Like. It. Was. Yesterday.

I wanted to reach through Facebook and hug this mom (Can you work on that Zuckerberg?). I wanted to tell her that I know the heartache, the uncertainty and the fear she was feeling at that precise moment. I wanted to tell her that as long as she loves him, as long as she advocates for him, as long as she accepts him, he will be ok. So, I did tell her all those things. I tried to help her understand, but, I knew that my words would bounce off her shattered heart like a pogo stick.

The day you hear The A Word, the kind, compassionate doctor may tell you, "Your son is the same little boy he was before you walked through that door", but, what they don't tell you, what they don't say, is that you are not.

Something inside you shifts. Yes, there is the worry for the future, the concern that dreams you once had for your child may change, the stress of how you will afford all that is necessary for him while you are here and after you are gone, but, mostly there is the need for more. More information, more education, more answers, more patience, more awareness, more therapies, more advocacy, and more love. More...than you ever planned.

I get that now, and because I do, the more is not so scary or overwhelming, but, for that mom who only had two hours to process the words, "Your child has autism", may not. And the difference between the two of us is, I am "here" and she is "there".

When I was there, I researched the words, "cure", "alternative therapies", "treatment for autism", "gluten free, casein free diets" and in the end, we spent thousands of dollars on a listening program as a form of therapy to hopefully reduce the impact autism would have on Ryan's life.

When I was there, I would watch him spin the wheels of his dump truck and beg him to "play" with his truck. 

When I was there I would watch him push the same button on an electronic toy over and over and over again then mimic the same noise to a tee and beg him nicely to stop. 

When I was there, I worried so much about the boy who was yet to be, that there were moments and days that I missed the boy who was.

When I was there, I focused so much on trying to help him conform, to help him fit in and be like "all the rest", that I did not see how amazing his uniqueness was.

When I was there, I panicked and sometimes through my fear I tried to stop his scripting, his constant mimicking of television shows and video games that I did not listen to the incredible way he was trying to communicate with me.

When I was there, I saw the label and I did not see him and so, I wanted more.

Being there is hard. I wish I could show that mom how much better it is when she gets here. I wish I could tell her that her desire, her need for more still exists, but, it takes on an entirely new meaning.

Now that I am here, I no longer look for more cures or more causes, I accept my son's diversity and applaud every single step he takes, regardless of how different those steps may look.

Now that I am here, I no longer try and get my son to conform more, to fit in more, but, I give him the support he needs to feel proud of his differences and feel more confident about who he is, while trying to help him understand what is acceptable and appropriate in a "neurotypical society" without ever making him feel less.

Now that I am here, I no longer try and get my son to stop his unique way of communicating with me, but, instead, I try and find more ways to communicate in his language which always brings a smile, while still providing him the tools he needs to communicate in a way the world will understand him.

Now that I am here, I give my son hope that one day more people will accept his differences and that those difference won't really be so different, and that one day the world will see more Ryan and less autism. 

Now that I am here, I still worry, I still wonder, and I still have my kick in the gut moments, but, those moments are so much fewer "here" than they were "there". I have had more time to accept his differences, more time to understand his incredible mind, but, mostly I have had more time to watch my son surpass all my fears, my worries, and show me that there is so much more to Ryan than autism.  I have accepted that the moment that brought me more pain than I could have imagined when I heard the words, "Ryan has autism" may define that moment, but, those words do not define him or his future.

To the mom who is "there", I know that it's hard because you need more...more time, more acceptance, more progress, more understanding and more awareness. You have yet to see the progress, you have yet to see all the "more" that he or she will do, you have yet to see all that we have seen who are "here". And I know that getting from "there" to "here" is different for all of us, but, somehow knowing we all get here together, makes traveling from there to here a little less lonely and a lot more appreciated.

Dear Ryan's Friend,

I know it's hard to be his friend sometimes. I know that it would be easier to find a friend who didn't struggle to interact with you. I know it would be easier to find a friend who likes to do things that interests you, not just things that interest him. I know it would be easier to find a friend who asked about your day, who asked about your vacation, who asked about your...anything. It would be easier to find a friend who walked next to you, not behind you, who sat beside you, not two seats away from you, who invited you over and played with you the entire time and didn't go to his room...alone...wishing that perhaps he had never extended the invitation to have you over in the first place. I know it would be easier with someone else as your friend, but, believe it or not, for Ryan, being your friend doesn't come easy to him either.

For Ryan, it would be easier not being your friend at all. It would be easier to stay locked in his room, in his world, hidden from the social implications that come with being a friend that he doesn't always "get". It would be easier for him not to invite you over...ever...so he wouldn't have to agonize over what to say, how to say it, and worry after he said it, if he in fact, said it right. It would be easier for Ryan to stop being your friend because then he wouldn't have to try and remember things that you like, things that you don't like and things that you want to talk about. Not because he doesn't care about you, but, because it's much easier to remember every location of every country in the world, than it is to remember if you like chocolate or vanilla ice cream or if you want to talk about Minecraft or girls. It would be easier for Ryan not to be your friend and to always walk alone, not two steps behind you, it would be easier for Ryan to sit alone than to sit near you and it would be easier for Ryan to play alone than to play beside you. You see, when Ryan lets you (or anyone) "in", he understands there is a good chance he will do the wrong thing, say the wrong thing and act the wrong way, and that then makes him vulnerable and he opens himself up for embarassment, confusion and ridicule. It would be easier for Ryan to remain alone, remain "friendless" than risk being hurt by someone he doesn't understand and who doesn't try to understand him.

As hard as it is to be Ryan's friend, it's even harder for him to be yours. Not because you aren't patient, kind, fun, accepting or understanding, but, because being a friend is hard for Ryan. Period. 

I know it would be easier with someone else as your friend, but, I wish you could see yourself the way he sees you, the way I see you. Ryan sees you as a friend worth the risk. Ryan sees you as a friend worth the struggle. Ryan sees you as a friend worth the uncertainty. Ryan sees you as a friend that is accepting and understanding. Ryan sees you as a friend that is safe. Ryan sees you as a friend. Period.

As Ryan's mom, I see you as a friend that Ryan wants to try and know better, even though his words, his actions, his inactions may look otherwise. I see you as a friend who is flexible and willing to go with the flow and sometimes sacrifices what you want in order to keep Ryan happy. I see you as a friend with a kind soul and a gentle heart who loves to come to our home, hang out with Ryan, raid our snack cabinets and always, always leaves with a smile. I see you as a friend who tries to teach Ryan what it means to be a friend, how it feels to have a friend, and how the right friend accepts you just as you are. I see you as a friend who opened a door for my son that may have always remained closed had you not walked through it.

I wanted to take the time to share this with you, to help you understand why sometimes it's hard, but, mostly to thank you. I want to thank you for understanding that easy isn't always "right", easy isn't always best and easy isn't always cool, but, some things, some people, are worth a little detour around Easy Street. One day you may decide that it is too hard, that there are other friends that are indeed easier, but, I want to thank you for being the first friend. The best friend. The true friend. The friend who opened the door and showed Ryan what and who was on the other side. The friend that showed Ryan that even though having and being a friend can be hard, when the right friend comes knocking at the door, he should try and let them in. 

Sincerely,

Ryan's Mom