Autism Lives Here

When you come into my home and see nothing decorating surfaces or hanging on walls at toddler level, it is because Autism lives here. If we do not have a Christmas Tree again this year, if the Halloween decorations on the mantle are dissected, and if there is an empty chair at the Thanksgiving table from a little boy not wanting to socialize over a holiday meal, it is because Autism lives here. The baby books lost to shredding, the furniture moved out of his bedroom, the baby gates and zip ties over dead bolts, are all because Autism lives here.

Some days, like today, when I have tears because I’ve never heard that sweet little voice say “I love you, mama” it’s because Autism lives here. When I worry about if he will have friends or should I dare say- a girlfriend, what he would like to be when he grows up and if he’ll ever be able to use words to tell me, it is because Autism lives here.

The laughs you may hear coming through our windows when we all join in on his favorite stim of running around in a circle to chase him, are because Autism lives here. The exclamations of joy that shake the house when new words are spoken and the claps for a job well done on something that made him screech in distress the day before, are all because Autism lives here.

My ability to have a reason to stay the course and believe in someone more than I could ever believe in anything is also because Autism lives here. The ability to plan a dozen steps ahead yet remain utterly flexible in any given situation, the patience I have learned, and the opportunity to live life truly not caring what anyone sees, hears, or thinks when we go out in public, are all because Autism lives here.

Caleb is not a victim to his Autism. He’s simply…..Caleb. And he happens to have Autism. We don’t love him despite his Autism, we simply love him. Caleb lives here and Autism does too. Just because we didn’t invite Autism in with a welcome wagon doesn’t mean it’s not here. If you’re struggling with acceptance, don’t worry. You’ll get there. Give yourself some grace and a little more time. I used to close the door on Autism too but now it pretty much has a seat at the dinner table. Feel sad. Feel mad. Just don’t forget to feel grateful you have the opportunity to be the reason someone in this world becomes an amazing person who does amazing things.

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

 

 

Always Do the Hard Things

Caleb has a lot of needs. But he also does a lot of things FREAKING AWESOME. There are aspects of Autism we don’t live. Caleb does not have severe sensory integration deficits. He eats well. And he only eats edible things. His behavior is totally redirectable. His play skills are amazing. I can take him lots of places. On the contrary, he does not have many words. And he has even less friends than he has words. There are good things but there are also hard things.

I feel…I hope….that a lot of the things Caleb is doing well in the world right now are because we made hard decisions when he wasn’t doing as well that are ultimately, paying off. When he was 2 and a half, we took all the furniture out of one room of our house and replaced it with an outdoor plastic play set. Mini rock wall, ladder, slide….because it was winter and we needed an easier way to drop everything every 90-120 minutes to stay on a sensory diet. And because I hadn’t had chairs in my dining room for over a year because his heavy work seeking tendencies meant he pushed them all through the house and scratched the floors. I wanted him to get sensory input. Functionally. Pushing a heavy oak chair down the hall and back would crush his barely-able-to-walk sister. Everything in the china cabinet came down so we could put a trampoline in the living room. 80 year old place settings and Tiffany wine glasses were replaced with baskets of Playdoh, bottles of bubbles, and velcro picture strips. We did not need pretty things. We needed functional things. The play set moved outside but I still have crayons instead of wine carafes in my china cabinet. (Cause let’s be honest, I don’t need to waste an extra step by using a carafe).

I made a decision early on….even before I knew we were lifelong hosts to Autism….that we weren’t going to play tablet games. (This was a personal decision only. It is not a judgement, it is not an official stance, it is not anything other than a description of how we roll around here). After I found out though, that Autism was pulling up an uninvited chair to dinner, I COMMITTED to the no iPads, Kindles, Fires, whatever decision. That was a hard thing. Do you know how many thousands of stickers we’ve gone through while waiting for food in public instead of playing a game online? Do you know how many packs of bugs I’ve bought at the Dollar Tree to open up in Dr. waiting rooms instead of putting the kindle on the charger? I likely could have avoided a lot of meltdowns. Maybe I wouldn’t have had to leave abandoned carts in countless stores. Maybe I wouldn’t have almost died from embarrassment at the ENT, the Urgent Care, the audiologist, etc. This feels sanctimonious but I truly don’t mean for it to be…..I just wanted him to play. It is difficult going multiple and consecutive birthdays and holidays and watching your child stim instead of play with the toys people loved him enough to get him. So, if it required wifi, it wasn’t allowed. We played blocks, ball, cars, Potato Head, sensory bins, everything else. And eventually, his play skills were typically developing. He has imagination, he has innovation, he pretends, he engages in dramatic play setups……one of my favorite things to do is sit and watch him play because there was a time when it took massive amounts of hand over hand to stack 3 blocks. Now I’m picking him out Lego sets. He has zero interest in someone’s phone and all the interest in the world in someone’s ability to race monster trucks with him. But it took a year and half of hours on the floor with Little People instead of hours beside me on the couch with an iPad. I’m 100% supportive if your house uses devices. I’m not anti-electronics. In fact, I’m 100% certain Caleb learned his ABC’s from Youtube. But I give you this insight to paint a picture of how truly nonexistent our play skills used to be versus now, where Caleb’s interests are 100% appropriate for his chronological age. This means so much to me because I can not have a conversation with my son via traditional means. Even with AAC, he’s not yet able to tell me about his day or how he is feeling…..but we can play together.

I take Caleb a lot of places. You probably see pictures here, on my personal Facebook, on Instagram, etc. And you see the smiles and successes. I don’t post that at Touch-a-Truck we had a meltdown about getting off the ambulance that resulted in my ponytail being pulled out. Or that last time we went to Fenderz we had to walk laps around the building until the food was ready. Or that at the Transportation Museum a little kid blew hateful raspberries at Caleb because he yanked train tracks out of his hands. Or that no matter the museum, zoo, festival, or fair we go to…and no matter how OVERALL well he does at these places, there is ALWAYS at least one instance of him being the loudest kid up in the joint for at least a hot second. But we go. Every Saturday, we go. And we stay. We may bail on carts of Christmas lights at Lowes, but we always stay at these events. And whatever rough patch we have, it’s always overshadowed by something amazing that he did that day. Like when we finally stopped yelling whenever he had to get off of a truck and move on to the next one. Or learning that the fries at Fenderz are most certainly worth the wait. Or getting over our run-in with the kid about train tracks and making it to the rail yard to climb actual trains. And if he doesn’t get out and experience things, how will we know what to foster in him? I’ve spoken before of his love for aviaries. If I had to have put $ on it before our first trip to the zoo, I would have assumed he would hate them. Now we’re building one on the property. My favorite Temple Grandin quote is this:

“Kids have to be exposed to different things to develop. A child’s not going to find out he likes to play a musical instrument if you never expose him to it.”

Thanks, Temple. You’re why we have a keyboard, a guitar, drums, and a harmonica upstairs, soul sister.

It would be easy to care more about home decorating than making my home a sensory friendly environment. It would be easier to buy apps than action figures. I would love nothing more than to spend Saturdays on the couch in pajamas. But if we don’t go anywhere, we’ll never get where we want to be. Literally and figuratively.

So, if you ever wanna road trip to a children’s/science/transportation/history museum with me at the crack of dawn on a Saturday, throw on your best yoga pants and grab a large coffee for the both of us and I’ll meet you there. I’ll bring the sticker books 😉

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

Toddler Gardening: Why You Should Be Growing Things

Four years ago we were renting a small suburban home in Norfolk. Then we bought a 30 acre farm in Southwest VA. Cause doesn’t everyone?

No, our rationale wasn’t that cavalier but to save time (and your interest) I’ll summarize: we felt strongly about being in charge of our own food sources, ensuring we knew the kind of life the animals we consumed had, and having opportunities for our children to grow up in what we envisioned was the best fit for us. It doesn’t mean what we’re doing is right and what other people are doing is wrong. It just means this was the best fit for our family. Live and let live, ya’ll.

Part of that has been a yearly expansion of a garden. I’m doing pretty well this year and will need to upgrade to a canning system next year but in order to do all of that, I need helpers. That’s right- Bebop and Rocksteady to the rescue.

Also, I’m a big fan of toddler chores and functional skills. If you ask me to create a novel therapy plan for my patients, I’m going to pick tasks like slicing bananas and folding laundry first and add the speech therapy targets second. It’s likely I should have been an OT but there is no time for grad school remorse here.

So, because 30 acres is a lot and because I’m all about that functional generalization of life skills, I bring the kids to the garden with me. Here’s what that helps out with:

– learning early science concepts like how things grow, weather, etc.

– socioemotional development like responsibility, achieving goals, etc.

– sensory development (touch, taste, smell, sight, sounds…all of them)

– feeding development: have a picky eater? Kids who participate in growing or even just helping cook their food are more likely to try a bite (and even like) new foods

– fine motor skills: crossing midline with a shovel, bilateral coordination getting plants in the ground, pincer grasp picking up seeds, core strengthening digging in the dirt (and about 329482094823 other things!)

– language development: identifying and labeling all kinds of new vocabulary- food vocab, descriptive words, actions, sequencing words, following directions….literally everything you do in the garden can be a speech therapy target. Do you know when Ari said the word “okra”? When she grew it. When Caleb first said “pick”? When he did it. It’s more fun to talk about what you’re actually doing than what other people are doing…..

There is also a lot of research that subscribes to the same notion I do about gardening: it improves both your physical and mental well being. It’s exercise, there are healthy microbes in the dirt you’re digging in, and it alleviates stress and anxiety- take it out on the weeds, not each other, everybody!

Check out my littles learning skills in the garden that are going to generalize to other functional tasks, expand their vocabulary, and prepare their hands for important things like writing and typing!

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Is that two children cooperating on one task together? Why yes it is!

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Remember what I said about being open to new foods? Caleb picked these himself and started licking and tasting them immediately without a prompt or having Velveeta melted on top. Have you ever seen a kid look so lovingly at a broccoli crown?!?!

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You can’t see it happening, but all kinds of fine motor control and strengthening is going down with the shucking of the corn and the picking of the grape tomatoes…….

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Heavy work sensory input from picking and hauling melons? You know it.

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Time to talk about it all while you take it out of the box! Also, sorting was super fun for my kiddos with the fresh produce.

Grow some things. Maybe an herb or a flower in a pot on the kitchen counter. Life’s more fun with a little dirt mixed in 🙂

Here’s a video clip of Caleb saying “pick” while he harvested the banana peppers (I don’t even like banana peppers but I sure do love the kid doing the picking!!!).

https://www.youtube.com/watch?v=fPT3aulw5WA

Love, Autism, and Tomato Plants,

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

 

I Notice That You’ve Noticed

These days, when I’m out and about , I notice that you notice. You notice that there’s something different about my son. Because he’s 4. He’s not a little kid anymore. Plus he’s also the height of a 1st grader so that makes it extra confusing. Regardless, you notice that he’s quiet or that he needs a lot of redirection or that we step out for a few minutes sometimes to have a sensory break. Because when he was younger it was easy to blame him not looking at you or saying “hi” from the shopping cart on him being tired. But now, he’s too big to sit there. So we take two carts. And daddy and Ari shop from one and Caleb and I use the other to play. Nothing in particular. But we stay in one spot and just simply practice being in stores and doing things typical families do and I understand how we have to go about that looks a little different.

Did you see us at Fenderz and notice that Daddy had to take Caleb outside two times to walk around in the grass while we waited for our food? Thanks for not prying or judging but simply offering him a pack of crackers and extra crayons. But did you also see us this past Saturday at El Parral and notice how we sat nicely from start to finish and didn’t mind waiting or sharing our food with sissy? We have successful days and we have challenging days. But we never stop going places. Because we won’t learn and grow if we’re home bound. And I have developed a strong ability to have blinders to people around us when we’re out so don’t bother shooting your judgy eyes my direction because I won’t see them. I’m too busy helping my kid.

We’ve taken up residence at the skating rink recently. Caleb and his sister like it there. I like it there. Maybe it’s because it doesn’t feel like we stick out like a sore thumb when we’re there. The music from the DJ booth is loud and you can’t talk over it so no one notices that he’s quiet. He laughs and plays games in the arcade like other typical kids. But mostly, I love that he’s the youngest one out there skating without help because it’s hard to find things when we’re around typically developing kids that he’s the best one at. And it’s not a contest. It’s never a contest. It’s a marathon, not a sprint- I know and believe all of those cliches. But I’ve gone 4 years watching everyone else’s kid lap mine developmentally and it’s nice to see mine rocking it. That’s fair. Yesterday we skated for an hour and a half and for that time we were out on the rink, it felt like Autism was locked up in the rental locker with our tennis shoes. Sometimes, it’s nice to just have a minute to breathe.

So, ironically, the skating rink, with it’s loud music and flashing disco lights, is where we find our peace. I don’t notice people noticing anything because there’s not much to notice. And it’s ok that eventually we turn in our skates and walk to the car and sometimes have a tantrum because all of a sudden we stop and realize that we’re tired and thirsty and that’s a lot to have to process and communicate for a kiddo like mine. And we go back to being noticed (especially by the cashier in the Wendy’s drive thru as we try to order Frosties while Caleb screams from the back seat). But it’s easier to turn everything back “on” when we got 90 minutes to skate away our worries while Katy Perry serenaded us at the roller rink.

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I hope your family has its own happy place too 🙂

Love, Autism, and roller skates,

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

Happy Father’s Day

The first child you ever met with Autism was your son.

That’s a circumstance that you met with a steady hand, calm brow, and pocket full of patience.

I know you were excited when we found out that our first child would be a son. I know that you looked forward to playing catch and talking about dinosaurs together. I know also, that it’s probably disappointing that you haven’t been able to do those things yet.

What I know more than that, though, is that the grace that you have displayed in not having tossed a ball back and forth with our son or had an exchange about velociraptors versus t-rexes is to be commended. I know we speak often that we do not deserve praise or special attention for anything we do with our son because we’re his parents- we’re simply doing what we are supposed to do as those people in his life and it just happens that our situation calls for a little extra effort with him. You should understand, at least, that I notice you. I notice that you don’t force a ball in his hands because it’s something you want him to do, but that rather, you sit beside him nicely as he lines up rocks when we go outside. I notice that just because he doesn’t talk back to you, that you still continue to tell him everything about your days together and how proud you are of him every night when you tuck him into bed. And one day, I know the dino talk will come. In one way or another.

Today, on your 4th Father’s Day, I want you to know that you’ve been doing an extraordinary job being Caleb’s dad. His confidence, intelligence, and perseverance all come from you.

Happy Father’s Day, my love. Caleb won’t understand what today is. But know, anyways, that he wouldn’t be the incredible, amazing child that he is without you.

Love,

Erin and Caleb. May one year he find the voice to tell you all these things himself.

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