One World: A Dad’s Point of View

In contrast to my dear wife, I am much more private about sharing on the internet. She really wanted to share my experience so we’ll give this a shot.

Coming to terms with your child having autism is difficult. First, there’s the standard bargaining and denial while trying to attribute the signs you are seeing as symptoms of anything else. He’s not as responsive because he couldn’t hear well, the tubes will fix this. His language is delayed because he’s been focusing on developing his off the chart motor skills. Upon hearing about all the words a friend’s child of the same age was saying, I countered that my still silent toddler can push the dining room table across the room, so take that!

Eventually, we run out of excuses and have to come to terms with our child having autism. It’s a sort of mourning process, where a parent loses the child they thought they had and the life they anticipated. We dream of a life of happiness for a child, of little things like playing catch, of getting a hug and hearing “I love you” from a safe, happy, and engaging son or daughter. That dream gets shattered like a dropped glass upon accepting the diagnosis.

Over time a new dream forms with different expectations and ultimately acceptance. I look at autism as Caleb partly lives in another world. While I’m trying my best to bring him into ours, I also am trying to understand and live in his. Autism is wide-spectrum and some children will live fully in their own world or, conversely, be even more in ours. For example, Caleb will occasionally reach out and rapidly scratch my chest or face. That’s his way of communicating “I’m happy and I love you” when he’s filled with feeling good but doesn’t know how to express it. That feels awesome and brings such a smile to my face now. We also work on language and I’ve been rewarded with an extremely rare spoken “I love you” maybe 3 times in 2 years.

As Caleb grows older, we face new challenges but also new reasons to rejoice. Caleb has inherited our love of animals and has shown such interest in dogs, fish, snakes, and lizards. Incredibly, he has demonstrated deep affection for newborn puppies, even going so far as to lie down next to the litter and gently stroke them. I’ll take it! Similarly, Caleb has started playing with action figures… flying a caped superman and batman around the house. No real engagement with me but he occasionally gestures for help such as in getting them to sit in toy vehicles. Riding on my lap and getting to “steer” a variety of vehicles also gives him such joy.

While it would be nice to be able to communicate more about the animals, action figures, or vehicles, these mutual interests have formed a bridge between our two worlds. My new dream is to build upon these bridges as Caleb grows. Every child is different though and my new expectations may be too great or too small for your situation. I think, at least, that every parent should be able to find some sort of common ground interaction with their child, and that is a good place to start building a new future.

Love and Autism,

Brian

My Why

“Erin, why are you doing this?”

That question would be better rephrased as: “How could I NOT do this?”

It’s been exactly one year since “Take That, Autism!” was an idea in my head. 12 months since I bought the domain. 6 months since I put the first idea on paper and 2 months since I was brave enough to make the first post. That 1 year mark of “Take That, Autism’s!” existence is significant not because it’s the night I asked my husband to buy me the things one buys when they want a website, but because the night I thought of “Take That, Autism!” and the night I got my husband to get out his credit card on a whim, is also the night I proclaimed to the world about my son having Autism.

Close friends and family had had a year to process and accept Caleb’s diagnosis but I never eluded to it on Facebook because….boundaries (if you can believe I have any). I had thought about making a post about it before but never quite found the way to say it how I wanted to say it. I wasn’t sure if my husband wanted it declared….I didn’t know if I wanted the questions- both the ones of genuine interest AND the ones driven purely by curiosity. But what happened was I reached a point where it wasn’t a matter of what I did or didn’t want to post, but instead, what I needed to post. This is how it came out on Facebook:

“I’m Caleb. I like Potato Head, Little People, puzzles, books, and coloring. My FAVORITE thing is to play piano. I enjoy eating french fries, shrimp, yogurt, pizza, and granola bars. Summer is my favorite because I get to go swimming and I’m pretty much a mer-man. I have a daddy I’m obsessed with, a mommy who’s obsessed with me, and a sister who mom and dad say we need but no one asked for my vote. I have an endless backyard, my own room, and lots of dogs too.

I also have Autism. I like the same toys as other kids but sometimes I play with them a little differently at first. I try to use my words but it takes me more time to get them. I could play all day long but I may not always want to play with someone else.

You can feel lots of different ways about that if you want. It’s cool- mom and dad have. Me too. Sometimes I’m sad when daddy leaves for the day cause he’s part of my routine and I LIKE my routine. Sometimes I’m mad when mom puts on the wrong episode of Backyardigans. (Why hasn’t she learned “Samurai Pie” IS functional vocabulary?!). Most times though, I’m happy. I’m the happiest, most confident, affectionate little boy you may ever meet.

One thing you should never feel is “sorry” for me. Or my daddy. Or my mommy. Maybe sissy when she takes my goldfish crackers though. I’m here, happy, and healthy and that’s more than a lot of other people. Plus my mom is a pediatric speech pathologist with unlimited connections to resources and professionals- we’ve kind of got this on lock.

So, if I pop into your head later, think of me as the sweet, silly kid who likes nachos, basketball, and Christmas carols. (Who also HAPPENS to have Autism). And if you ever feel like you need to talk to my mom, send her a message. She literally spends all day with someone with Autism whether it’s a patient or her son. She doesn’t have business hours- you can talk to her anytime. It’s not all the time that you can speak to a professional in the field who is 100% honest when they say “I understand.” My mom might throw a “sista’ friend” to the end of that cause she thinks she’s cool but don’t let that take away from her credibility.

Thanks for taking the time to read all the way through and I’ll be sure to check back in with you soon.”

Check out that last paragraph you guys- that’s my why. I remember this time last March I told my husband that I thought I could help people. That I found myself in this unique position of being a professional who works with children with Autism and in my personal life I was the parent of a child with Autism. The only difference between me and you is that I haphazardly picked a major in grad school while browsing through the course catalog that gave me a set of tools that happened to specifically match up with the specialized care my child was going to need. I could have just as easily decided to major in accounting or graphic design. No one runs around with a z-vibe and articulation worksheet when they’re 6 saying “I want to be a speech pathologist when I grow up!”. I chose it because it seemed practical, it was in demand, and the classes seemed interesting enough. How fateful did that turn out to be? And I just felt like maybe I was supposed to take this unique position I found myself in and go out and do something with it. Plus, if you’ve read my Intro Post then you know a few months before we realized Caleb had Autism I had overcome a brain hemorrhage, hemorrhagic stroke, high risk C-section, and brain surgery so yeah- I was feeling a little carpe diem.

That whole bit may have sounded self promoting but I don’t mean it that way. I’m the first to tell you I’m not a parenting expert and I’m not an Autism expert. But I do have a knowledge base that is valuable and I also have the ability to understand. I understand the hard days. I understand the uncomfortable feelings you sometimes have in public. I understand the worry about maybe never being invited to a birthday party. I understand that it’s not just sometimes the little things….it’s always the little things. They’re all we’ve got, really. And so when someone tells me that something they read here helped them cope, gave them something to relate to, gave them words to a feeling they couldn’t describe- that is unequivocally, absolutely my why. Because how in the world can anyone ever do this alone?

No, I don’t feel like I’m exploiting my son. I don’t worry one day he’ll be upset that his entire life- including the struggles- has been documented online for anyone to know about. I don’t have concerns that someone will read it one day and hold it against him. Because I hope that when the day comes when he understands what it means to be an individual living with Autism that we will already have instilled the confidence in him to be proud of everything about himself. That he will have the luxury of perspective because he will have had his story told, chapter by chapter- so when he ends up where he’s going to end up, he will appreciate the journey it took to get there. Also, he’s becoming more verbal by the day, and I’ll teach him the EXACT things to say to anyone who has anything unsavory to say about anything.

So, here I am- one year later. I know on paper I’ve just gotten going but in my head, we’re doing big things together one day, you guys. That’s right, all of us. Because maybe “it takes a village” to raise a typically developing child, but for a child with Autism, it takes the whole dang continent. So, let’s unite. Let’s do it up right. I know sometimes it feels like “the struggle is real”….but if we’re in it together, it really doesn’t have to be.

Love and Autism,

Erin

Was that “toddler” or was that “Autism”?

My son is 3.6 years old. He is our first born. He has Autism. Do you know how many times my husband has looked at some shenanigan Caleb was in the middle of and legit asked me “Is that toddler or is that Autism?”

He’s not being funny- he’s not being mean- he’s being straight up. Toddlers do some crazy nonsense. Autism has its own unique set of tendencies it likes to bring to the table. If you’re a first-time parent, if you’ve never been around a child with Autism- I totally see why you’d be perplexed.

Let’s go over some scenarios:

My toddler just ran 11 laps around the dining room table and is now trying to swing from the chandelier like a marmoset who just downed a 12 pack of Mountain Dew.

Let’s break this down.

Toddlers have an insane amount of energy. Toddlers are active and sometimes fearless when it comes to climbing, jumping, and swinging from chandeliers like caffeinated primates. These are in fact things that toddlers who would be considered typically developing might do. But let’s take a closer look. Is your child simply full of energy or is your child exhibiting sensory seeking behaviors? Kids who are just being active may like to run and jump but they’ll likely do other typical things as well such as make a social game out of it, seek out your eye contact to see if you’re noticing, talk about the ridiculous things they’re doing while they’re doing them, etc. Here are some things that I noticed that did NOT strike me as typical when Caleb used to run laps around the table. He was seemingly oblivious to whether we were there or not. That was a decreased awareness to his environment. When he ran in a circle, he would tilt his head to the side and try to look out his peripheral as he was moving. That was a visual stim. That climbing up and down, up and down, up and down from the floor to the table was him seeking out proprioceptive input (I’ve talked about heavy work here). So, my pretty brass chandelier was replaced with a globe light flush to the ceiling, and chairs just started living at my dining room table full-time last November. Caleb was active and that’s ok, but the stimming and the strong sensory seeking tendencies needed to be addressed. Literally, as I write this, he is spinning in a circle in the living room, stimming off of Batman and Superman’s capes flying around with him. You do you, man.

Oh my toddler’s language is great! He can name all the state capitals, knows all the moons to all the planets, and memorized pi to the 12th digit.

But can he tell you when he’s angry? Or what he did at school today without prompting? I think sometimes people get confused between a child having a certain quantity of language overriding the fact that the quality of language isn’t what it should be. Having a favorite topic is fine. Having a highly preferred topic is fine. Talking about a topic as a fixated interest, however, is not typical. If your preschooler can tell you about a historical event, a certain animal, a region of the world, but is unable to tell you what he and his friends did at nursery school or respond to a “wh-” question without going off topic, I strongly encourage you to bring it to your pediatrician’s attention. Or maybe, you have a child prodigy. I’m not judging, here. But I know Caleb can count to ten, but doesn’t have a word for “hungry” or “hurt.” He can label his colors but doesn’t have words for all the foods he eats. He knows the alphabet, but he’s never said his name. You can have all the language in the world, but if it can’t be used functionally, it is going to make all the difference.

I’m 6 inches from by toddler’s face, saying his name, but he won’t stop watching Clifford and his big red dog self to look at me.

Who hasn’t lost a battle to the tv with a toddler? Daily!? Toddlers also can have selective hearing and are motivated simply by what they want to be motivated by. But think back for me. When did your child start consistently responding to their name? It should have been by 7 months, definitely by 9 months. If it was after 12 months, I would consider that a red flag. It doesn’t have to necessarily mean anything by itself, but in conjunction with potential other concerns you may have, it could definitely by noteworthy. Also, note to see if your child is responding to environmental sounds even if they’re not responding to speech input. Maybe they were fixated on Clifford, but did they respond when their real life dogs barked at something outside or when they heard the front door open up? Always bring any concerns about hearing to your doctor’s attention.

My toddler just had a melt down because I gave him the blue cup instead of the red cup and told him he couldn’t play in the toilet. 

DUDE!!!! This is the hardest! There are entire sites dedicated to “Ridiculous Reasons Why My Child Cried Today.” Because phrases like “terrible twos” and “threenager” exist for a completely valid reason- because the attitudes of toddlers and the attitudes of teenagers can both be terrible. And there’s a lot of social-emotional development going on in a little person in a small amount of time- you betcha it’s overwhelming. We have a hard time with this here. Part of Autism is that you can have a hard time with impulses when things don’t go as anticipated or when you need something to be a certain way because of a compulsion. For instance, Caleb sometimes gets upset with how food is presented to him. The fries need to be on that side of the plate, the chicken on this side. He wants to make it into little pieces. 100%, I caught him eating the around the chocolate shell of an M&M to get to the peanut, putting the chocolate and peanut into different piles, and eating everything pile by pile. That is a compulsion. On another note, maybe he earned some tv time but after awhile went to play in another room so I turned the tv to Pandora. He might come back and have something to holler at me about for it. That is a toddler power play. And that’s a whole different beast.

Ultimately, I always tell people that before your child is a toddler with Autism, you child is simply a toddler. And some typical things that toddlers have been known to do without concern are also things that find themselves on the “red flags for Autism” lists. While there’s no steadfast rule for every child, if you have concerns that persist, if you have a gut that a behavior isn’t quite typical, or if you’re worried about your child’s language development- always bring it up to your child’s pediatrician. Also- disclaimer- try not to be too “if/then” with development. I remember about 5 years ago, a very popular parenting magazine came out with an article that was something to the effect of “Words Your 1-Year Old Needs to be Saying.” And literally, the last sentence of that article was “if your child isn’t saying one of the words on this list, please take them to the doctor to talk about the potential for Autism.” No joke, 2 weeks later, I got a referral in my office of a mother who was concerned her 14 month old had Autism because he wasn’t saying the word “juice.” No other reason- just the “juice” thing. I will say, good for her for being worried and taking action instead of being too scared to move. But, look at the whole picture- the whole child. Trust your gut, talk to your doctor, talk to another one if that one doesn’t listen, and remember- those toddler tantrums will fade but that means fun things like toddler snuggles will too. So, no matter how he makes you feel about him behind his back sometimes, don’t forget to cover that sweet face with kisses when he turns around.

Love and Autism, ya’ll. Have a good day.

 

 

 

 

Redefining Expectations

I got the sudden urge to start cleaning every corner and closet of our master bedroom this weekend. Well, if we’re being honest, I ran out of piles to put clean clothes instead of putting them away and had to sort through the mountain and redo drawers and closets and stumbled upon some piles of stuff along the way. I’ll stay transparent. One of the things I found was Caleb’s baby book (which I appear to have stopped putting things in at approximately 8 weeks old. He’s going to be 4 this year. Ari doesn’t even have one. I assume at this point her ultrasound pictures are at the bottom of an old purse somewhere. Mom of the year, here.). I opened it up and saw cutesy things like his pregnancy announcement, footprints from the hospital, pictures in itty bitty onesies……then when I could pick my melted heart off the floor it made me think about something……

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…..things kind of didn’t turn out how I expected them to.

Caleb having Autism has now been our truth and our reality for the majority of his life…..I’ve almost forgotten those early days when it wasn’t even on my radar that he’d ever have anything other than typical, day-to-day kid challenges ahead of him. You know…..perfecting his jump shot, getting up the nerve to ask out the pretty girl from bio class, passing driver’s ed. Now, I worry about almost everything. I worry that I’m not doing enough, that I should be doing “this” not “that”, and mostly that the rest of the world may miss out on everything this amazing little boy has to offer because he has a hard time finding his words, learning the way everyone else learns, and forming social relationships. Those aren’t little things to worry about. It’s everything.

So, what I learned, was that I had to redefine my expectations. And I’ll admit that that wasn’t as challenging for me as it potentially is for others. I worked in pediatric rehab for years before Caleb came into my life- I spent all day every day celebrating small successes. I was used to taking a “slow and steady wins the race” approach and I knew that a kid I may be seeing today would likely make so much progress over the course of a decade that no one would ever believe that there was a time they needed to come see Ms. Erin two times a week. I understand that’s not the norm. I also understand that when the only child you know who has Autism is your own child that it’s a lot scarier.

If it helps, I’ll tell you all that all those glorious things that I got to be “used to” before Caleb came into my life didn’t “fix” anything for me. It didn’t give me rose-colored glasses. If anything, it mostly just took the edge off, is all. Like a cheap glass of gas station Moscato after a hectic day. Here are the three biggest things that Moscato and experience helped me redefine and establish a new set of expectations for:

Social Media Bragging:

Oh, your child is starting to learn words in their second language? Well mine said “green” 6 days ago. You potty trained your toddler by 18 months? Our goal is by Kindergarten. From the time Caleb was 1 until after his second birthday I scrolled through videos of my friend’s kids that popped up on my news feed before they could automatically start playing or hit “like” without hitting “play” to at least give the facade of support. That didn’t last forever. With acceptance comes pride. In yourself and in proclaiming how amazing your child is for the world to hear, even if the amazing things he’s doing, your friend’s kids were doing 2 years ago. And do you know what I’ve found? He’s one incredibly loved little boy because I’m certain there isn’t a single person I know who isn’t doing backflips about that child saying “green.” Give yourself some time, give yourself some grace. Expect there to be joy in the little things, make an Instagram post about it, and see how many people rejoice right alongside you.

Relationships:

Mine and my family’s. Mine and my husband’s. Mine and my child’s. This topic deserves it’s whole own post one day because leaving it at a measly paragraph feels borderline insulting. Do you know how exhausting it is to have to educate pretty much everyone you meet on why your child is how he is? “Please don’t scold him for throwing blocks- he was fulfilling a visual stim.” “He has trouble with eye contact. Do not grab his face (unless you want me to punch you in yours).” The advocacy never stops and it can be exhausting. The divorce rate in this country is already unsettling and did you know that it’s even higher in parents with a child with special needs? Caleb has an amazing daddy who is also an amazing husband but Autism has CERTAINLY made its way into the middle of arguments in this house. But do you know what’s the hardest expectation to redefine? The relationship I expected with my son. I expected that we’d sit on the couch watching Finding Nemo and I’d look at him and say “I love you, Caleb” and he’d look at me and say “I love you too mommy.” But that’s not the reality. I tell him “I love you, Caleb” and he keeps lining up his trucks. But a few hours later he’ll come climb in my lap and get his face as close to mine as he can and give my cheeks the biggest squeeze his little fingers can muster up and THAT is his “I love you too.” Squeeze away, my love. These cheeks are yours, son.

Thinking About the Future:

I’ll admit that I’m still working on this one. I’m optimistic and at the risk of sounding like a cheesy motivational poster you see hanging in the back of a preschool classroom with a kitten holding onto the end of a rope, I truly do believe that if we continue working steadily and just hang in there, we’ll get to the same end point that everyone else gets to. I would be lying though, if I didn’t tell you that things like girlfriends and the potential of maybe not having one, didn’t make me nervous. You know that space that’s just below your diaphragm and right above your stomach? I call that the mom gut. (It may really be your liver, I don’t know- I didn’t take anatomy). My mom gut always starts feeling nervous when I think about things like that. I’m working on reminding my brain and mom gut to get on the same optimistic page when I think about Caleb 15 years from now but it’s ok if the future makes you nervous. I’m trying the hardest to make this the place where I don’t redefine expectations of my son, but of myself. I expect my son to grow up to be smart, social, independent, and to have a job and family all his own one day. But I’m also going to expect myself to remain positive, believe in him, stay the course, and just. hang. on.

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This Ain’t Holland, Ya’ll

So, there’s this story that’s often told to families that compares receiving an Autism diagnosis to taking a trip to Holland when you planned your entire vacation around going to Italy. You learned Italian, got excited about the cuisine, and then when the plane lands, you walk outside and find yourself in Holland instead of Italy

Autism ain’t Holland, ya’ll.
One- let’s not compare Autism to a vacation. It’s a job. Lots of work. You don’t get a break when you live Autism. Two- if you went to the Italy Trip Store and they told you, “My bad, we gave your ticket away but here’s some Holland from the stock room,” it wouldn’t be such a bad deal. So you trade pasta for fish, the Coliseum for windmills, and wine for tulips. (Well, maybe that last trade sucks but you’re picking up what I’m putting down). Essentially, going to Holland instead of Italy is just doing one fun thing instead of another fun thing.
Autism isn’t fun. It doesn’t rock my socks. I don’t love it to the moon and back. I could think of 2349820420984098423 other things I’d rather do. My son, however, IS fun. He’s the cat’s pajamas. I adore his stinky self. I tell him daily he’s the most perfect son. But HE is not Autism.
I don’t agree that it is advantageous to advise parents who are receiving a new diagnosis that Autism is like going to Holland instead of Italy. With that said, I do understand and can even appreciate the sentiment behind it. Autism is not the worst thing that can happen to your child….it’s simply something different than what you thought was going to happen. There are awful, terminal things that can happen to our children. This is not like those things. I understand why this anecdote is recanted time and time again- I’ve personally heard it for years. But I also don’t want people to feel trivialized. Everything is relative. It’s ok, when you get a diagnosis, to feel upset and sad and mad about it. Just because it’s not “the worst thing that could happen” doesn’t mean you’re not allowed a minute to feel like it is.  What matters, ultimately, is where you end up. If you find acceptance and make the right steps to help your child, you’re allowed to feel however you’re going to feel along the way. Being told I’m “going to Holland instead of Italy” makes me feel like I’m being cut off in the middle of a feeling-like someone is saying “Eh eh eh eh….feel this, not that….it could be worse!.” I’m certain these are things people say when they do not have a child with Autism. You have to feel things in order to work through things.
Let’s advise parents differently. Let’s advise the truth- it’s going to be hard sometimes. It’s going to be a lot of work. But it’s going to be so rewarding to see the hard work pay off and ultimately, everyone is in fact going to be ok.
It felt like Afghanistan in the beginning. I haven’t found Holland yet but we seem to be sitting somewhere in the Florida Keys right now. A lot of days are sun-filled and fun but sometimes hurricanes still blow through. And when they do, we simply pick up the pieces, fortify the foundation, and wait for the sun to come out again.
Where are you all right now?