The Words Unspoken

From the title I imagine you thought this post was going to be about having a child with nonverbal Autism. Nope! Plot twist.

We had plans today but some crud swept through here preventing us from going. We managed to work up enough good vibes to go to Lowes and the grocery store though. Running errands with Caleb isn’t easy, but we’re not people who take the easy way out anyways.

And I was so excited when it was over! I thought he did an amazing job! We were in Lowes for 35 minutes and Caleb sat in the bottom of the cart and built Lego people and was very quiet and happy as long we we were walking around the store. Which we did while I bombarded him with household vocabulary through the different departments. Then we went to Aldi and he continued building Lego people in the bottom of the cart while we went through the aisles. We passed the bread section, he took my hand and pointed to the wall of carbs, then put my hand directly on what he wanted as we walked by it all slowly. So, to reinforce awesome communication, I opened up the Sweet Hawaiian Rolls and he ate 3 until we checked out and were loaded in the car. No screeches, no attempts to leave the cart, no stomps- it was peaceful and nice and fun.

But when I was recanting to someone later about how proud I was of him, I got the wind taken 0ut of my sails a little. I was posed with the question, “but how successful was it really?”. They proceeded to tell me that Lowes was only successful because I kept the cart moving and Aldi was only successful because I gave him food. And that I wouldn’t have been able to do it by myself because I needed my husband to take Ari and get the needed items and I had to have a cart dedicated to making Caleb my sole responsibility.

I have noticed that things like this being said to me is becoming a trend. Sometimes, people bring things he has trouble with to my attention. Like I don’t make a 15 category lesson plan every single day for him to address his difficulties and delays and don’t know what he needs. Sometimes, people also only compliment him in relation to his Autism. “Thats so great! When would he have done that if he didn’t have Autism?” or “For a kid with Autism, he worked that puzzle really quickly.” There’s this whole big category of things people could say that goes largely unsaid by 90% of people we come into contact with. The words left unspoken are all the things he’s doing well or all the amazing things about him that have nothing to do with Autism. Don’t tell me what he’s struggling with, tell me what you notice he’s rocking out on. Compliment him on his achievements because he achieved them- not because he achieved them despite Autism. Yes, it is true that I have a large social media presence that revolves around the fact he has Autism- but that is not for him. That is for me and for other parents on this journey and to educated and promote acceptance. If you know me- like really know me- then you know I talk about Caleb allll the time and it is rarely in a context that has anything to do with Autism.

If 3 Lego men, a tour of Lowes, and a $1.75 package of Sweet Hawaiian rolls is all it takes for us to run hours worth of errands successfully, SO BE IT. He’s 4. This is obviously not the end goal. But before you get where you want to be, you have to simply start where you are. And this is where we are today, so this is where we’re starting.

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Love, Autism, and Hawaiian Rolls,

Erin

Yes Mamas- there is a Santa Claus.

I have a friend and fellow mama who said to me recently, “If you write a blog about people understanding kids with Autism during the holidays, I will share it. My family will share it, my friends will share it, it will be shared.”

So, now I take requests 🙂

As a grown, responsible, typically functioning adult at Christmas there is a lot you have to think about, take in, and execute in order to participate in the holidays. There’s decorations, lights, different foods, extra time in stores, more navigating through crowds and parking lots, music, the list goes on and on and on. It’s exciting, fun, and maybe a little bit adventurous. Do you know what else it is?

Overwhelming.

Now, imagine all those new smells, new sights, new sounds, new tastes, new additions to routine, breaks in routine, extra people, extra noise, AND you have something about you that makes the following likely true: 1) You don’t have the language to communicate how all of these things make you feel- whether they make you happy or upset you, the words or abstract concepts these things elicit are not readily available to you. 2) You have sensory integration difficulties that make you hypersensitive to noises, lights, smells, etc. and all of those things are coming at you all at one time. 3) Your social skills are a work in progress and you don’t understand waiting your turn in line, why Santa wants to get all up in your business, and that all those toys you see in every store don’t get to hop in the cart and come home with you immediately.

Let me tell you a couple things that might happen when your little body feels all of those big feelings.

  • Meltdowns. For a NUMBER of reasons. Communication barrier, over stimulation of sensory input, difficulty understanding how to respond in negative situations, and a dozen other things. Do you notice what I didn’t put on that list? Meltdowns resulting from lack of or poor execution of parenting skills. Meltdowns because parents don’t discipline their children. Meltdowns because kids are spoiled. Those aren’t on the list because that is likely what you assume is causing meltdowns in children you see in a superficial glance across the mall food court. It’s easier to blame somebody’s mama instead of taking the time to learn about a disorder no one in the world has ever been able to fully understand. Let’s do better than this.
  • Stims. The NEED to stim. Not the preference to….the NEED to. A stim, or self stimulatory behavior, is most typically a repetition of sounds or movements that a child with Autism does to calm them and help them focus. It could be a loud, repetitive sound, it could be hand flapping, it could be rocking, it could be spinning an object- there are no rules. It could also be because they are immensely excited to see Santa or also because they are terrified of seeing Santa. Stims happen in response to feelings and sensory input that is deemed both preferable and non-preferential in kids. So if you are beside a kid in a checkout line flapping their arms against the back of your coat or if you see a kid with the lights from the Christmas decorations half an inch from the corner of their eye- it is a stim. And it is, in 100% of opportunities, to be respected. What if someone told you you couldn’t cry when you’re sad or take deep breaths to calm down? You’re self regulating. The fact that others need to self regulate in a different kind of way shouldn’t concern anyone to the point of annoyance

Now that I have told you about what my child needs, let me tell you what I need.

  • I need your silence a lot more than I need your opinion. I don’t even need your support- that would be demanding. I’d love to have it, but it’s no loss to me if I don’t. But I absolutely don’t need you to say “You should really…..”, “Have you thought about……”, “My brother’s girlfriend’s grandma’s coworker has a kid and….”. Do you know how many breaths it takes to tell someone “You’re doing a good job” versus how many it takes to tell someone “What’s wrong with your kid?”. The exact same amount.
  • I need you to understand why I’m here. I don’t need you to understand my child- I don’t  even fully understand him some days. I need you to understand why in the world- even though I know that it could end with both of us in tears, that there will be sensory overload, that the novel vocabulary is unknown, and that the social norms aren’t understood, why we are here doing this anyways. There’s lots of reasons- you don’t learn skills unless you practice them, socialization, learning in natural settings, blah blah blah. That’s what the clinician in me says. But do you know how I answer that question as a mama, not as a therapist? We are here because I refuse to accept that my child can not have the opportunities to do everything every other child has the opportunity to do. It does not matter if we come and we try and it’s horribly unsuccessful. Because maybe it won’t be. Or maybe it will be until all of a sudden it’s not. But when it works it’s going to be amazing. If you can read the last 5 sentences I wrote without an emotional reaction- without tearing up, losing your breath for a second, nodding your head in agreement, then you. don’t. get it yet. And me and my army of Autism mamas need you to go back and read this and the entire rest of the Internet until you do.

This is my son’s 5th Christmas and I do not have a picture of him with Santa. I want one. Desperately. For him, because I think he would like it and also, for me. Because there are so many things that haven’t gone as I had pictured them, that this one potential picture with Santa means we’re getting there. It doesn’t mean that a stranger in a red suit finds out he wants a Nerf gun. It means that I have a snap shot of progress and there’s hope for me that one day he’ll get to take a child of his own to see Santa.

So, I’m the crazy mama calling malls trying to set something up for him and as a backup plan, I bought my own ever lovin’ Santa suit at Party City this weekend. That’s beside the point though. What I really need you to understand, is that if you see a little one out this holiday season having a hard time and their mama is having a hard time with their hard time- be slow to judge, even slower to speak, and try to have some holiday compassion. Anything you can do to contribute to their success represents so much more than JUST a picture with Santa, JUST sitting through the Nutcracker, or JUST posing in front of a Christmas tree.

Behind every little lap sitting with Santa is a parent who believed they could. And with a little Christmas magic, anything is possible.

Love and Autism,

Erin

Her Brother’s Keeper

This whole “Take That, Autism!” site was started for my son Caleb. You can read about that here. Ari is his little sister, born barely 18 months after he was. You can read her backstory here. I found out she was on her way when Caleb was only 9 months old and Autism wasn’t on the radar. And while I was overwhelmed at having two little ones so close together, I ultimately decided that it would be amazing for them to be so close in age because they would be best friends and partners in crime. I am an only child. I think, particularly now as an adult, that that would be an amazing relationship to have. So ultimately, I was excited for them.

Things have played out a little differently but we are getting there. When Ari came home from the hospital, Caleb was young but developmentally, I would have still expected a minimal interest and intrigue in her. Caleb had about zero environmental awareness that she was even here. That’s a devastating reality to the fantasy you have in your head of what it will be like when your children meet each other. Her 3rd birthday is coming up soon and this past summer was the first time he’s had an interest in her. Which has also been heartbreaking because she has so desperately wanted him to be her friend. Her little voice exclaims, “Caleb!” and she does what he does and follows him where he goes because she just desperately wants love back from him. And I believe, in fact, that he does love her. But I had a conversation with co-workers this evening about how Autism expresses love in non-traditional ways. Caleb will take all the toys but give her back the frogs because he knows those are her favorite. He will squeeze her ears when she does something she likes because that’s simply what he’s decided means “I love you.” And while I have to redirect behavior so that he is sharing and not stealing and being gentle and not hurting her, I understand what his actions mean when his words fail him.

I could see, however, that from the outside looking in, it may appear as though we are running a fun house. We aren’t. Everything has a rhyme and a reason and a purpose. Someone said once, “she has it rough with him.” And it made me sad and mad and reflective all at the same time.

It’s a perpetual concern of mine that Ari not get left behind. But that is different than being hardshipped by being his brother. I would be naive, I suppose, to assume that it wouldn’t be easier for her to not have to deal with his communication barrier, compulsions, sensory seeking, <insert all other challenges one faces with Autism here>, but…….I’m not comfortable viewing the situation as a negative one for her.

What I hope though, is that being Caleb’s brother will make her a strong, compassionate, individual. I hope that she learns to accept people without judging them, truly understand’s a person’s worth, figures out how to think outside the box, and ultimately gives zero consideration to anything negative someone thinks about her. If she is successful in achieving those things, she will have done so by learning them from her big brother. Because if there’s anyone who’s out there living his best life without regard to what anyone thinks about it, it’s Caleb. And maybe that’s because his social skills are developing in an atypical way, but what a relief I sometimes feel it would be to live my life like that too.

I hope also, that when she is older, (if her father and I do our jobs correctly), that no matter what level of support Caleb ends up needing- that she always feels the need to help and protect him. I don’t want her to grow up and live her own life and have the attitude of “he’s not my problem anymore.” One does not have to harbor resentment in order to feel a responsibility to someone. That is what I want for her. I want her to worry about him, go out of her way for him, and defend him if he ever needs it. Because he is her family.

In a world where she gets to choose to have anything she wants, I hope the first thing she always chooses to have, is his back.

Love and Autism,

Erin

I’m Sorry and I Love You

Dear Caleb,

I was talking to a friend and fellow Autism mama last week and had the self reflection that I need to do better. This is not a matter of crossing items off of a to-do list for you like our home-school lessons, therapy sessions, social outings, etc.

I need to be a better me, so I can help you be the best you.

I need to have more patience. I need to pace us better. I need to watch what I say, be mindful of how I act, and show us both some more grace.

Parents ask me sometimes, when I am with their children, if I am “always this patient.” And the answer is simply “no.” From the hours of 9-6 in my office or in your home I absolutely am. And do you know why? Because I can do anything for 30 minutes. That is my job. I have formal and specialized training to use a certain skill set in a certain setting to help your child be successful.

I’m going to let you in on a secret. It is so much different when you live it. Even when I’m conditioned to spend 40 hours a week doing things the RIGHT way, the BY THE BOOK way, when you live it- when you don’t get a chance to come up for air and sometimes feel like you are drowning in it- there suddenly is no “right” way to do anything. Sometimes there’s just survival.

Sometimes I yell even though I know joining your chaos will not result in calm. Sometimes I get angry when I see something else ruined from a stim or compulsion. Sometimes I am sad when I call your name and you don’t turn and look at me.

I have been so used for so long to speaking so freely in your presence because you have been so quiet for the last four years that I have forgotten that you understand almost everything. And tone and body language are very meaningful to you so I fear, unknowingly, I have sometimes hurt your feelings.

I will do better for you, son. I will breathe deeply before asking you to do the same. I will save my loud voice to exclaim something joyful instead of yelling at you in frustration. I will not care so much about how things look inside these four walls but more about how you feel when you are inside of them. If I feel like I’m drowning, I will take a time-out until I feel like I’ve been up for air long enough to be my best for you.

Despite my flaws and short-comings, thanks for always greeting me with a big grin and a “hiiii” when I come home from work like seeing me is the most exciting part of your day. Thanks for the morning cuddles with cartoons and for complying 100% of opportunities when I ask for a kiss. I promise to ALWAYS return the favor.

I will offer more “I love you’s” than “I’m sorry’s.”

Love and Autism,

Mama

 

All Aboard the Autism Train

Choo. Choo.

If you’re friends with me on my personal Facebook page then you likely saw lots of pictures where we spent 9 festive filled hours away from home. We got our Zoo Boo on at Mill Mountain Zoo as Batman and Bat Girl, walked to the Roanoke Star, had a wardrobe change at an overlook on the Blue Ridge Parkway, and then did all the things one does at a pumpkin patch the weekend before Halloween. Yes, we had fun. Yes, it was a blast. Yes, we made awesome memories. But it was NOT all fun and games.

One of Caleb’s behavioral targets he’s working on is not losing his ever loving mind when he doesn’t get something preferred instantly. Some of it is behavior, some is his receptive language delay, some of it is rooted in compulsion as well. Regardless of the “why”, the fact still remains that we expect him to do things like wait his turn, tolerate being in line, and all comparable skills one must have to function in society. So, we go out and we practice these things.

This zoo has a train that you ride around the whole zoo in that Caleb thinks is pretty much the greatest thing ever. Zoo Boo meant the zoo was busier than usual so I decided that we would go down and wait in the train station 15 minutes before the train was set to run. I knew that I may be stretching the limits of how long he can wait in line but to my surprise, he sat there for 15 peaceful minutes eating candy from his trick-or-treat bucket chillin’ Batman style. Here’s the proof!

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Then it was time to board the train. Everyone in front of us got on and then “bam!”…….

……the gate was closed literally in mine and Caleb’s faces. The train was full and we’d have to wait for the next run.

#$%*&#@%!*%

You can pick up what I’m putting down there.

Holy. Moly. Guacamole. The next 10 minutes were quite probably the longest “Autism minutes” of my life. The meltdown was for real, ya’ll. I’m 100% certain that it would have been significantly less of a big deal to him if there had still been people in front of us so he could see, oh—we all have to keep waiting. Got it. But the gate was literally closed as it was our turn and he had no reference for that and receptively did NOT understand that the train was full but would run again and IMMEDIATELY assumed he’d been denied “just because.” And no, I DID NOT forsee that I would need to have a laminated visual to bust out my back pocket to explain this scenario (but best believe I’ll have one next time FOR REAL. I ain’t messing around). I must have given 487,463 deep pressure squishes, whispered 982 words of love and encouragement and about 5 minutes in I thought we’d be ok until…….

…..the mother loving train came around but didn’t stop because it was taking a SECOND LAP.

We kept squishing but instead of encouraging words to Caleb, I whispered them to myself as it took its second lap saying things like “keep your calm, don’t join the chaos”, “you got this, mama”, and “there’s gin in the fridge for later”. After 9.5 total minutes of waiting I finally got him to laugh by holding him upside down and swinging him from my waist for the last 30 seconds. He was dressed up as a bat. WHY HADN’T THAT BEEN MY GO TO SENSORY STRATEGY ALL ALONG!!! (I mean that both “lol” and “for real”). Here’s the dreaded gate and the picnic bench that became our therapy table while we waited.

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1 retied pigtail and 1 hoop ripped from my ear like we were battling over an Uber after last call and WE MADE IT. We rode that train like we’ve never ridden a train before, you guys!!!!

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So yes, we got to ride the train. But you know what we didn’t do? We didn’t give up. We didn’t bail and walk to the car cause it would have been easier. We didn’t sulk off somewhere afraid of what other people would think. We stayed at that freaking gate, we dealt with the negative side of Autism, and we rode that glory train for a victory lap like you wouldn’t believe.

I wish I could tell you that’s the only time I had to break out my “I’m a speech therapist but maybe should have been an OT” skill set.

Meet the tube slide at Jeter Farm:

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It’s a delightful slide and one Caleb enjoys very much as it’s his 2nd year in a row sliding down it. I stand at the top of that wooden platform to help him take turns with the other kids and he slides down, runs around to the stairs, and climbs back up again. That was not a problem. He did that beautifully. Until it was time to not slide anymore…..

…..triggering the meltdown in the sunflower field. Another couple hundred thousand squishes later and a mental note to pack laminated visual aides and a brushing protocol brush next time we go somewhere, and I convinced him we would ride the pumpkin train. Caleb rides rides independently and awesomely because he understands that something across his lap means he is to stay seated. He has never broken out a car seat buckle and rides fair roller coasters like a boss. Caleb happened to be sitting in the only pumpkin car that did not have a buckle. *Slaps forehead in a “OF COURSE IT DIDN’T” sarcastic fashion.”*

So, a quick convo with the farmer pulling the pumpkin cars and Caleb rode the pumpkin train with his mother squatted over the back of it to ensure he stayed put. He did. And we had a great time together.

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I want everything for this kid. I fully understand his Autism and accept it but that does not mean my expectations aren’t extremely high and that we will just sit on the bench and watch life pass us by. We will always do the hard things. And in our pursuit of doing the hard things, I don’t mind losing earrings and squatting like I’m going to take a poop in a pumpkin train if it means he gets a chance to do everything every other kid gets to do. There’s literally nothing I wouldn’t do for this kid. Ever.

Before I go, I’d love to give a shout out to some places you should take your littles, especially if you have one with special needs.

Mill Mountain Zoo Roanoke, VA

I am certain that the lovely young conductor running the train at the Zoo Boo knew that Caleb wasn’t just having a tantrum. (Please don’t make me cry by thinking tantrums and Autism meltdown are the same thing! That’s like saying N’SYNC will forever reign over Backstreet Boys and we all know that’s just HOGWASH!). I think from the unspoken look we exchanged when she had to close the gate that if she could have kicked someone off so we could get on, then she would have. But that’s not what we’re about. I appreciate the proud smile she gave us after our ride was over and we, along with everyone around us, had survived.

Jeter Farm Roanoke, VA

  1. Places like that are awesome for sensory input- barn stalls filled with dried corn kernels, slides, swings, a corn maze to run through (cause we literally ran it), etc. 2. That farmer could have told me that squatting over the pumpkin car wouldn’t work….I’m sure there’s a liability with that kind of thing. But I asked politely, gave him a quick explanation of why I needed to, and his lovely response made for one of the highlights of our day, yesterday, when he muttered those simple words of “Why, sure!”.

Check these places out. They’re doing great work for our kids!

I’ll leave you with this. Remember the meltdown over leaving the slide? We got over it, got up, and brushed the dirt off our elastic waist khakis and finished out our day, there among the sunflowers. I figured there must be something poetic about that so I looked up “what do sunflowers represent?”. According to Google, sunflowers represent:

  • Loyalty and strong bonds between two people, as represented by the strong and upright stem.
  • Seeking out positivity and strength, as the bloom turns to face the sun.

That’s us. Me and my guy. A strong bond like the stem, always looking for the sun even when the dark clouds are all we see. Stand tall, my love. Keep a smile on your face. Be strong. And the sun will always come out tomorrow.

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Love and Autism,

Erin

That Time I got Throat Punched by Autism

I knew Caleb had Autism before anyone else. I knew it even before I ever spoke it out loud. Before I knew it was Autism, I knew something wasn’t right.

The first time I recall concrete symptoms is probably 15 months old. But if I scrutinize really hard, I think I can recall some subtle signs at 9 months old. It took, honestly, until he was 22 months old for anyone else to see it. And then it still took me “making a case” for it.

Upon reflection, how odd it is to me that I lived on this lonely island of knowing the truth for the better part of a year but yet I still struggled so hard to find acceptance.

In the beginning, the denial phase made me google like a mad woman to see if it could possibly be anything but Autism. I don’t like admitting it, but in an effort to remain transparent, I will tell you that I wanted it to be anything else. Genetic syndrome? CMV? Severe hearing impairment? Those things aren’t exactly glorious either. And there is always the adage of “it could always be worse.” And yes, there is truth in that. There are terribly scary things like pediatric cancer, congenital heart defects, pediatric transplant lists. I think this personal struggle I had comes from two places. 1) accepting ANYTHING is different about your child is an extremely hard things to accept as a parent. 2) I do not do well with abstract. I don’t like things subjective. Autism is, in essence, exactly that. There is no blood test, genetic panel, machine induced readings that can be done to tell me with 100% certainty and most importantly to a concrete, left-brain dominated purveyor of logic- to tell me why. I’m married to a man who is a molecular biologist by education and medical researcher by profession so yes, I have educated postulations but at the end of the day….I don’t know why “my son.” I do not tend to go with flows. I tend to make thoroughly detailed plans with contingencies for a dozen different “what ifs.” I did not plan for this. I did not have a contingency action plan (for real ya’ll….I say “action plan” daily). And then….no one could tell me why. And I just find that difficult.

At 21 months old I took Caleb to the audiologist to have his hearing tested because 1) delayed expressive language 2) delayed social skills 3) decreased environmental awareness/responsiveness. And I knew that she would tell me he needed tubes and that there were likely some decent decibles being knocked off his hearing. But I also knew that it wasn’t what the bigger picture was. I knew that whatever disadvantages he was having with his hearing would not account for how statistically significant the gap was in his language development. I told her before we started testing that day “I am probably going to take him in for a developmental evaluation because I have concerns about Autism.” She did the testing. She told me, as I anticipated, yes, he needed tubes, yes he wasn’t hearing optimally. And then she said, “And I’d go ahead and schedule that developmental evaluation.”

And I felt like she literally just punched me in the throat.

I’ve told this story before here because that was the moment Autism became real for my family. In my original telling of this story I didn’t mention that everything became all the more real when Caleb had a straight up meltdown in that Audiology waiting room when I was checking out that left me squatting on the floor with him writhing on one hip while I pressed medical forms against a baseboard in an effort to put the pen to paper to try and sign some semblance of my name.

I cried on the way home. I first thought Autism 6 months before that appointment. I fought hard telling friends, families, and colleagues that I knew that is what it was and having everyone tell me I was probably over reacting. I didn’t know it would be so devastating the moment someone agreed with me.

I find that one of the most damaging things you can say to a parent of a child with Autism is anything in the category of “Are you sure?”. In the beginning…when things are still fresh….when they are raw….we will cling to anything you give us. Because acceptance doesn’t happen immediately. You have to grieve before you can accept. And I needed a good year before I started declaring to the world “Take that, Autism, you <insert string of expletives here>!”. So, when we’re still grieving, and you say to us “I don’t see it”, we’re going to try to not see it too. But that doesn’t mean it isn’t there. If you give a mouse a cookie, the mama mouse is going to desperately try to not believe her child has Autism. And then stress eat the cookie.

So, at 8:30 am on a Monday morning in Greensboro, NC, Autism straight up punched me in the throat. I couldn’t talk. I couldn’t breathe. I couldn’t swallow. Autism came at me and came at me hard. And it took a loooonnnngggg time for me to stop resenting the little Autism monkey that has taken up residence on my shoulder.

What has been advantageous though, is that in flight or fight situations, I always fight.

And I hope that is a trait I’ve passed onto Caleb because we still have a long ways to go.

 

Love and Autism,

Erin

 

 

Nonsense Not to Say

I follow a lot of Autism-specific blogs, sites, click baits, etc. And I’ve read a million different “what not to say” to parents of children with Autism articles and in the early days of the “Take That, Autism!” Facebook page, I made a crazy lady snapchat video about it too. Out of sheer exasperation. Nonetheless, I decided to make my own “what not to say” article…but with alternatives of what TO say instead because it’s obnoxious to complain about something but not do anything to fix it. Note- this list specifically targets the initial meeting when I first reveal to you my son has Autism. Cause the dumb stuff people say in other contexts is another post for another day 😉

  1. “I’m sorry!” Legit, this is the worst. Someone only said this to me one time but it took me back because it was someone who was in charge of running an entire facility for children with Autism so it just made me wanna slap my forehead. My child is happy, healthy, intelligent, and generally hilarious. If I were bolder, I’d have asked what the heck it was exactly she was sorry for. Alternative? Just acknowledge what I said with a general affirmation. You may even ask me how he’s doing. But I don’t want your pity. Just your understanding.
  2. He doesn’t look autistic”/”Are you sure he has Autism?” This is a repeat player on lists like these. I do not want my child to have Autism. Autism is not something I enjoy. It is painful to see my child struggle every single day. Please believe, when I say he has Autism, it is to state a fact, not to make a wish. Alternative? Keep your mouth shut.
  3. “How autistic is he?”/”Is your son more or less autistic than ___?” 1. I hate “autistic”. I’m not known for my political correctness, but in this particular context, please use people-first language. Tangent over. 2. What the what does that even mean? That one happened to me just last week and I didn’t even know what to say. Did the DSM make an “As autistic as ____” rating scale no one told me about? Like how arbitrary would that even be ?!?!? “Oh sure, Caleb is as autistic as a tyrannosaurus but not as autistic as a spotted lynx.” This inquiry makes 0% sense so follow in the way of the tyrannosaurus on this one and make it an extinct question to ask.
  4. “Does he talk?” Do you poop? Do you brush away your stank morning breath? Because as the parent of a child who is non-verbal, that’s how personal this question is for me.  Just freaking ask me how he’s doing in a general, overall sort of way and it’s likely I’ll tell you anyways!
  5. “Oh! My cousin/nephew/baby mama’s great uncle twice removed has Autism, too!”  Ok, ok…I won’t hate on this one too much because I appreciate the sentiment behind it. People want to try and relate so they can connect and people only do that when they truly care about you. Just please understand that knowing a child on the spectrum simply means you know a child on the spectrum. You don’t know MY child. But please, always feel free to tell me about your coworker’s sister-in-law’s next door neighbor who has a 3rd cousin with Autism. I jest! For real, I like to hear about EVERYBODY’s story.
  6. “You’re so awesome!” No, I’m not. I do not need a cookie, much less a trophy. I’m simply doing my job as his parent. Parents are supposed to take care of their children, meet their needs, and set them up for success. My child happens to take extra effort, have more needs, and the road to successes takes longer but despite that, at the end of the day, I’m simply doing my job. I’m not that fantastic but my kid is the bomb diggity, ya’ll.

Now these two things are NOT “typical” responses but have in fact been said to me. To my face. And I just have to share them with you because they are THAT B-A-N-A-N-A-S.

“Nah, he doesn’t have Autism. One day he’s just going to grow up and be weird. Like his dad.”

Did you reread it 3 times? You read it correctly. Someone for real thought that was ok to say. I watch a lot of Jean-Claude Van Damme movies and stuff like this makes me wanna straight up bust out my Bloodsport fighting skills. I KNOW about the kumite, peeps.

“Well I used to work with kids with Autism in an institution and I decided not to have children because I was afraid God would send me a child like the ones I worked with.”

Is it 1832? Did the DeLorean take your professional experience and your manners back a couple centuries? Ya’ll tell me where these institutions are and I’ll get my pitchfork ready.

Maybe that’s helpful to you. Maybe not. Maybe, at least, I gave you a late night chuckle after a stressful day. Whatever you do or don’t say….just be kind.

Love and Autism,

Erin

Autistic Child or Child with Autism?

Early in my career, I would use the term ‘autistic child’ when describing a case while writing papers. My wife, the speech pathologist ever so connected with her families, would always correct me that it’s a ‘child with autism’… the child has autism…. autism doesn’t define the child. I would change the wording to appease her but thought it was kind of silly, surely there’s no real difference in semantics. Well, I am realizing that I was wrong.

Not so much about the phrasing as I still maintain these are interchangeable; however, the sentiments behind the perception of children with autism are very real. I have long expected Caleb to be seen as autism incarnate by strangers when out in public. They don’t know Caleb and will not get to know him so it’s whatever, no skin off my back. What’s becoming more apparent is how close friends and family perceive him. To some, he’s Caleb this cool kid who also has autism much like other kids might have asthma or diabetes. Others see Caleb as autism, full stop, and all conversation must revolve around this. The fixation is not something I had anticipated.

Caleb’s godfather is a great example of not defining Caleb by his autism. Heck, I don’t think I’ve ever even heard him say the word autism over the past several years. This isn’t because he doesn’t know or doesn’t care, but rather that he’s just interested in Caleb being Caleb. Sharing a new word that Caleb just said doesn’t evoke the all too common response of “how many words should he be saying” or “that’s great but when will he talk normally?”. I really appreciate this and I know Caleb will too. He deserves to stand on his own without every action being constantly put under the autism microscope (not microscope with autism, Erin!).

The truth is that we don’t know what’s going to happen, and you probably won’t either with your child. The best we can do is to try our utmost to provide Caleb with all of the tools he needs and take one day at a time. Sometimes when Caleb does something awesome, Erin and I will say “Yeah! Take That, Autism!”. But sometimes, Caleb just needs to hear “Awesome, buddy!” and that’s it. He can be awesome on his own without needing his awesomeness to always be defined in relation to autism.

I don’t want to this sound critical, or even forbid, whiny. I really appreciate having friends and family who love Caleb and have his best interests at heart. I just don’t want them to miss out on Caleb himself though with the autism filter removed. The Caleb who enjoys sitting still while bird watching, figured out how to make his own roller skates out of toy cars, and has already taken a strong interest in helping me build with tools.

….He’s a pretty cool kid once you get know him.

 

Brian

It’s Hard Because You’re Doing It Right

Maybe you need to hear this today. Or yesterday, perhaps. Me? I need to hear it everyday.

I have a major pet peeve when I hear people say “I LOVE Autism!” “Autism is my PASSION!”. I’m a speech pathologist- I have a Master’s Degree based on my ability to utilize the English Language to convey specific meaning to my communication partners so yes- I get hung up on semantics. You do not love Autism. Maybe you love helping kids with Autism. Maybe helping families who just received a diagnosis is your passion. But you do not LOVE Autism. If you do, then you and Autism have never met. Cause Autism sucks.

My kid? Nah- he’s perfection on a silver platter. But my kid is not Autism. It’s just something he happens to have.

Back to the “Autism sucks” stuff. It does. And all the feelings we feel as parents of children with Autism? Those suck too. But let me let you in on a secret- having those feelings means you’re doing it right.

The punch to your gut that makes your stomach flip five ways to Sunday when you realize you can’t stop pretending “nothing’s wrong” or “he’ll come around”? That’s ok. It means you care about your child and the challenges he or she will face and the future that awaits them. You wouldn’t feel literally nauseous to your stomach, barely able to get dressed to go to your Developmental Pediatrics evaluation if you didn’t care what the future holds. I describe that so vividly because I lived it. Twice.

The exhaustion you feel that makes you feed your children tortilla chips for dinner and watch an extra episode of Clifford the Big Red Dog so you get an extra 23 minutes to “just be?” It’s because you have made a commitment to your child and took them to back to back speech and OT appointments, met the ABA therapist right after, and stopped every two hours to keep your child on their sensory diet. You’re exhausted because you’re putting every ounce of energy you have into making your child as successful as they can be. I tell people all the time that going to work is the easy part of my day. When I get home is when the real work begins. Parenting a child with Autism and making the right moves at the right time is the most challenging thing I’ve ever done.

The almost paralyzing frustration you sometimes feel that suffocates you and literally makes it hard to breathe when someone says the wrong thing or gives the wrong look at the wrong time in the grocery store? It’s because you love your child unconditionally and would walk through fire to never have to have them know how ignorant some people can be. Loving someone this much is exhausting. But incredibly rewarding.

This isn’t a negative post. It’s actually the opposite. It’s intent is to put a positive spin on all the feelings I described above. You feel those feelings because you’re doing this right. If you weren’t worried about your child, didn’t care if he reached his maximum potential, and didn’t want everyone to recognize how AMAZING of an individual your child is, then you’d never feel sick to your stomach, you’d always get a full night’s sleep, and you’d be oblivious to jerks in the cereal aisle at Costco.

Keep on keeping on, mamas. (And daddies, aunties, grannies, mammies, pappies, big bros, little sis’s- whoever you are, keep on trucking). I won’t tell you to “Keep Calm” because that’s impossible. Just keep on. If you need to cry or yell or curse along the way- that’s fine. Just. Keep. On. You’ve got this. Because you know there’s too much at stake if you don’t.

You’re doing a great job. I’m here for you. I believe in you.

Love,

Erin

 

1,460 Days

It’s been 1,460 days since we met. Well…technically not until tonight at 9:02 because you were an obstinate 24 hour labor, but who’s keeping score 😉 ?

I didn’t know 1,460 days ago when you made me a mom that I was also becoming a special needs mom. I didn’t realize the journey that was ahead of us, the emotions that would come when I knew “something wasn’t right”, or the heartache I would feel when my suspicions were confirmed.
1,460 days ago, I also didn’t know that I could love another human being as much as I love you. I didn’t realize that a kid could be so quiet yet have so much to say, that someone who doesn’t like to socialize would be so affectionate, and that I would want so desperately to eat each and every single one of your toes.
My love for you is a different kind of love. It has components of fear of the unknown that make me check on you several times each night. It’s tangled up in an affectionate web of worry that has you on my mind almost all day long. It has me clinging to our good days and cringing when we have bad ones. I love you hard. And a love that intense comes with a vast array of emotions.
But I’d like to thank you, my love. Over the last 1,460 days you have taught me that I can handle more than I ever thought. That I can take the bad with the good and remain optimistic, and how to prioritize my time. You’ve also given me the confidence to take on the world with you by my side and not give a you-know-what about anything anyone thinks or says about us.
I love your sister an incredible amount. And any future siblings you may one day have. But when it is all said and done, when I leave this place, I will leave here having loved you the longest and that counts for something.
 
Happy Birthday, my love. Know that there aren’t enough words for me to accurately describe how incredible I think you are or that would capture just how much I care about you. Because I love you so much more than simply to the moon and back.
May the next 1,460 days be as amazing as these have been.
Love and Autism,
Mama