Love in the Time of Autism

If you have a child that is typically developing, a child that does not have a social pragmatic disorder, a child that doesn’t have a speech and language delay……..how do you know they love you? I bet they tell you. I bet they show you in their craving of social engagement with you. I’m sure you see it in tiny gestures their big hearts make. So, as a parent of a child with Autism- a child who tries but is largely nonverbal, a child who’s social skills are severely impaired….a child who does not yet know empathy….how do I know he loves me? It’s there and I’ll be glad to tell you how I know. But first, let me tell you how I earned it.

Biology and bloodlines do not equate a child will automatically love someone. A child’s love is earned by individuals who provide stability, security, and comfort. By making a child feel safe, confident, and protected, you have put yourself on the right track of earning their adoring love and affection. That does not simply mean changing diapers and filling milk cups and ensuring they don’t run out into the middle of traffic will put you in an affectionate social standing with a little one. You have to engage. There are so many people I interact with on a daily basis that meet a basic need I have but that I don’t have a social rapport with….we don’t engage about anything other than a superficial exchange….thus, I have no love for them. I don’t dislike them, but I certainly don’t love them or miss them when they’re not there. You have to engage with a child to earn their genuine love and trust. You have to do things you don’t want to do when you don’t want to do them and forget that you’re tired or that you don’t feel well or you’d rather binge watch Netflix from the couch and engage with them. It takes time, effort, patience, and generally a few extra doses of caffeine throughout the day.

Now let me tell you about those things with a child with Autism. They take about a million times more time, effort, patience, and multiple espresso shots chased by a Red Bull to accomplish. Caleb does not typically seek us out to engage with unless he needs something. Thus, we have to make a conscious effort to stop what we’re doing, sit on the floor with him, and initiate an interest in what he’s doing. Caleb also had to be taught social games and exchanges. He did not instinctively know what to do with a ball when it was rolled to him. It took multiple adults and weeks of hand over hand for us to roll a ball back and forth to each other. That’s just rolling a ball, ya’ll. We got Candyland this weekend for his first board game….I’ll keep you updated how long it takes for us to understand the premise of that one. Do you know the patience that it takes to tell your child “I love you” literally hundreds of times and only hear it back in reciprocation about once every 50 attempts? If you ever do? Do you also know how sweet it is if you’re lucky enough to hear those sweet words uttered, no matter how apraxic the sounds in them may be?

The time, effort, and patience that we have spent the last almost 4 years investing in him have earned us cuddles, face squishes, ear flaps, the sharing of a cookie, an early morning crawl into bed, and lately, being invited to snuggle under a shared blanket. These are the ways my son lets me know he loves me.

While my relationship with my son grows stronger, I’m also noticing that distance is growing between him and other people he encounters. And I also know that this strain exists because he has Autism. It takes a lot more work to engage with him because initiating engagement, as well as maintaining it, doesn’t come naturally to him always. It’s harder to play with him because he doesn’t always play in typical ways. You can’t just ask him what he thinks about something because he can’t respond. What’s happening is that the extra time, effort, and patience involved with simply sometimes just being in his presence isn’t always something other people are willing to invest in him. And he’s beginning to become the odd man out sometimes.

There’s nothing that I can do to force anyone else to want to spend an hour on the floor with him even if it means that hour is silent and you group blocks according to color and then make a line of them descending in order by size and shape. I can’t force anyone off a couch and out of a patio chair and into his face and life, earning all the love this little boy has to give.  I can ensure, however, that my child is only put into situations where he is wanted.

I had a decent string of boyfriends in college and all of those relationships fizzled out for one trivial reason or another. But what I didn’t realize until recently is that despite that, I’ve never really experienced true heartbreak. Because what happened recently is that I saw my child treated negatively because of something he was born with that no one could help. And that is what it feels like to have your heart broken.

It was a difficult week as the parent of a child with special needs. But I hope that as a new week begins tomorrow, I can be a better role model for my son. I hope that he is never made to feel, no matter how many times he gets rejected in life, that “maybe this isn’t for me.” Every seven times he falls down, we’ll get up eight. I realize now, that it is my job to be the model of perseverance I hope becomes an integral part of who he is one day.

Love and Autism,

Erin

 

 

Apraxia and Autism: Where to Start

Because I think I’m generally hilarious, I decided that an unofficial subcategory of “Take That, Autism!” shall be “In Your Face, Apraxia!” because we’ve got more than one challenge on our plate.

I’ve talked to you about what Childhood Apraxia of Speech is and incidence rates of it in children with Autism here. Now, I want to tell you about what we’ve been working on and how to prepare ourselves for “true” intervention for apraxia.

Caleb says so many things that aren’t jargon, but true productions that are just that unintelligible. Because apraxia. Apraxia makes vowels beastly to form, consonants the trickiest of the tricksters, and then when you go to put those Consonants and Vowels into various CV, VC, CVCV, CVC, etc. sound combinations it all can become a very “say what?” situation. And that’s when you’re able to imitate things verbally on a 1:1 compliant ratio. But what about when you have Autism and are 3 and your verbal skills are just starting to develop and your ratio of imitating a single word is more of a 20:1 input/output ratio? And that’s just to maybe label…..NOT to produce specific sounds in specific sound patterns.

But your child wants to try. You can tell. They want to try to say more things. Where do you start? Here’s where we’re at.

Imitation Hierarchy

There are sooooo many things kids imitate before they imitate at the word level. Here’s the breakdown:

– Gross Motor Movements (jumping, kicking, etc. and then expanding to movements with objects such as rolling cars)

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Fine Motor Movements (clapping, motions to songs, playing with small objects and tools, etc.)

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– Oral Motor Movements (blowing, sticking out tongue, kisses, etc.)

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– Imitation of nonsense or environmental sounds (moo, vroom, etc.)

– Imitation of single sounds and simple words

I could not expect Caleb to say “car” if he wasn’t rolling a car across the floor or knew that it went “vroom.” And this hierarchy is not profound. It’s typical language development, really. The difference is that in typically developing kids, the first 4 steps usually don’t need to be “taught”. You probably don’t know when your child started imitating actions, play, animal sounds, etc. because they just kind of did it. Everything with Autism takes more work , more time, and a lot of times formal intervention to learn. Caleb did not imitate rolling a ball. It was taught. He didn’t start imitating motions to songs until last summer right before he turned 3. And it took a lot of watching YouTube song videos and hand-over-hand until he knew his own head, shoulders, knees, and toes. You can’t just look at Caleb and say “stick out your tongue”. It has to be this very elaborate back and forth in front of a mirror where ridiculous faces are made and you will ultimately end up getting lizard licked. Right now we’re teeter tottering between imitating nonsense sounds, single sounds, and 1 syllable words. Caleb can do some solid “ahhhhhhh”, “eeeeeee”, “oooooo” imitations to practice vowels and early developing consonants are coming through, but we are not ready to imitate sounds at the word level. We’ll get there, but it’s a marathon, not a sprint.

I wanted to review a solid imitation hierarchy because when we have 4, 5, 6, year olds who are not yet talking it can be very instinctive to just throw words at them and hope they stick. But imitation of movements, actions, and sounds are a crucial part of development. And if those skills didn’t develop, they need to go back and be addressed and facilitated. That does not mean; however, that you should not work on talking about all of the things all of the time. While you’re working on learning actions, talk about them. When you’re playing trucks, make truck sounds. You’ll get some back sometimes and that’s awesome. You don’t want to walk before you crawl. And I know parents get jazzed and bragged “my child didn’t crawl, they went straight to walking and walk just fine!” but I promise you don’t want that. Yes, maybe they’re walking now but if they never learned that crawling step, there could be implications one day of never having learned the proper skills needed for appropriate visual-spatial recognition, motor coordination leading to good handwriting, and a host of other things (which is a whole other post for a whole other day). Same principle applies here. Imitating actions contributes to increased attention to task, appropriate play development, improved eye contact and social interaction, etc. Do you want to skip straight to talking and skip all those other important developmental milestones? Probably not. No matter what your child’s age, it’s never too late to go back and start working on those skills.

Please stay tuned for future updates on Caleb and our Apraxia-Autism interventions (that will challenge mommy’s creativity and ingenuity) as we find the strategies and approaches that he’s going to respond best to. Thanks for being a part of our journey.

Love, Autism, and Apraxia, everybody. Here’s to the feeling of satisfaction we’ll have when we end up where we’re going to end up and the patience for us to hold on tight until we do.

Erin

Haircutting Tips and Tricks

Haircutting Tips and Tricks

Krystal Showers MSOS, OTR/L

Haircutting is one of the most difficult routines for children, especially boys, with autism. It is consistently an area that parents mention is so difficult for them, and a nightmare for their children. When we stop and break it down, it is easier to understand why this routine in particular sends so many households into panic. Families literally plan out haircutting day/ night, recruit support via extra hands and bodies to help, amp themselves up for what it means with meltdowns, and prepare to deal with a half-buzzed head for a while if need be!

Let’s look at haircutting from a sensory processing perspective first before we get into some tips and tricks!

Auditory

This is the big one for our friends with autism. I had one child describe the sound of high pitched noises, like the buzz of clippers, as “a sharp needle that stabs all the way into my brain”. Think- how would you like that right up next to your ears, let alone tolerate it for a good 15-20 minutes without becoming upset! Children with autism often have very sensitive hearing and can have difficulty filtering out noises. The sound of clippers can be unnerving, especially in a barber shop where there may be more than one pair going at a time or multiple people talking at the same time.

Tactile

Haircutting involves vibration tactile input which may be aversive to the child. What we may consider as a “tickling” sensation from the vibration, may actually feel like sandpaper or pins and needles. Even if you are using regular scissors, the light touch of their hair falling on their neck or skin can feel painful and like they are being stabbed with each tiny hair.

Movement/vestibular

Many children with autism have a high need for movement. Sitting still in a seat for a haircut can be very difficult. For children whose vestibular or movement sense is very poor, sitting still can be almost impossible as they crave movement as a basic need….just like food when you are really hungry!

Smell

If your child is getting their hair cut in a salon or barber shop there can be a LOT of smells in one small space. Children with autism can have a very sensitive sense of smell and can respond negatively to smells that others may not notice or be bothered by. With all the different people, shampoos, conditioners, dyes, etc., it can be a lot to take in!

How to make this routine easier for you and your child!

Auditory Strategies

  • Use scissors to cut hair rather than clippers
  • Provide headphones and music the child can control to help block out clipper sounds
  • Try haircuts at home or during very slow times of the day at a barber shop to decrease the amount of sounds in their environment

Tactile

  • If you have been trained in the Deep Touch Pressure Protocol by your occupational therapist doing the brushing protocol prior to haircuts will help your child stay calm and decrease some of the sensitivity to touch
  • Try to cover ALL the skin that stray hairs could land on using a towel or smock
  • Let the child experience the vibration from clippers on their hands first (ie: let them hold the clippers without the blade on so they can feel and get used to the vibration
  • Before starting, provide some deep squeezes to the child’s head (like a firm head massage) moving down to shoulders and arms as well to help prepare the child and give some calming input

Movement

  • Use a move-n-sit cushion during haircutting so they child is able to get some movement but still stay in their seat
  • Engage in intense swinging, spinning or bouncing prior to asking the child to sit for a haircut
  • Take short movement breaks to stand and jump and then sit back down

Smell

  • Try haircuts at home or during very slow times of the day to limit the number of extra smells the child is exposed to
  • Bring a small cloth with a favorite smell on it (ie: lavender or peppermint essential oils) for the child to hold up to their nose when the other smells become overwhelming

 Here’s a video of Caleb getting his hair cut. Check out his sweet cape!

Caleb gets super duper fly.

And here’s a video of Caleb cutting daddy’s hair!

Daddy’s gets what he dishes out. 

Choices, Opportunities, and Success

Choices, Opportunities, and Success

As the website grows so does the audience and reach of posts. We’ve also just received a lengthy communication disparaging everything Take That, Autism! stands for. While we will certainly not respond to all posts like this in the future, this provides a good opportunity to more specifically state what Take That, Autism! is about.

I wish my wife had saved the message she received as I would have posted it here for all to read but the gist of it was that Take That, Autism! is anti-autism and parents should not be providing any interventions to help their children succeed, especially by encouraging children to make eye contact with other people. Also, that my wife is too “neurotypical” to see how much these interventions damage children with autism. To channel my best friend from New Jersey, “Are you kidding me bro?!!”

Take That, Autism! is my wife’s creation and I cannot speak for her. Speaking only for myself, Take That, Autism! is about doing what any parents want to do for their children: providing our children as many opportunities as possible to succeed. I do not want my son to feel limited in his choices for success as an adult. If my son knows to make eye contact with others as an adult but chooses not to, that’s fine because he made that choice. If we don’t provide him tools for success in the form of interventions then we are severely limiting his choices as an adult. I want my son to have the choice of sitting in the boardroom of a Fortune 500 company, trying cases as a lawyer, or saving lives as a doctor. He can’t do these without making eye contact. We have a farm and I would be equally proud if he wanted to stay here and try to make a living off it. Even on a remote farm in the country, he’ll still be more successful selling cows, tomatoes, or grizzly bears if he can look a customer in the eye and give them a firm handshake. The same goes for virtually every way to make a living including electricians, entrepreneurs, welders, and hoteliers.

Lets note that I’m talking about reasonably attainable choices for an individual child. I’m not going to have my 3 year old practice golf for six hours each day to give him the choice of becoming a PGA pro. Similarly, autism is a wide spectrum and ultimate opportunities are going to vary for each child. For some, the goal may be any job at all that can provide some sort of satisfaction or semi-independence. It may even be just the ability to convey what food is desired for a meal or that a bathroom is needed. It is unbelievable that anyone could hold the viewpoint that parents are wrong to provide interventions that help children with autism tell their parents what they want to eat or that they have to use the bathroom. It is beyond me that some people are capable of thinking this way, let alone actively deride parents doing everything in their power to help their children have choices in life.

I could write a book about why this attitude is so wrong and damaging but let’s wrap this post up and maybe we’ll continue in another one day. To sum up, Take That, Autism! is about parents providing choices and the best opportunities for individual success for their children with autism. Whatever path in life they choose will ultimately be up to the child but we will do our best to provide them with as many options as possible. The choices and opportunities are going to differ for each child, and that’s okay, but we’re still going to do the best we can because our children deserve nothing less.

Brian

When Stuff Gets Real

When you’re dealing with the uncertainty of whether or not there is something different about your child, a security blanket exists when you’re the only one who knows. When you’re the only one who thinks it, the only one who sees anything wrong. It’s conflicting, really. I remember being frustrated that no one else saw what I saw in Caleb- that no one believed me when I first started saying “hey-something is wrong.” Simultaneously yet conflictingly, there was also security in that. That maybe my maternal hypersensitivity and eternally anxious nature, was simply worried over nothing.

But then there’s a moment when it all becomes real. Every family has that moment.

You’ve read my introduction post on everything that led up to us realizing Caleb had Autism. You’ve also read about how we redefined expectations and my husband’s perspective. Now, let me tell you about the moment when we hit the point of no return.

I’ve said before that I thought Caleb had difficulties hearing…was right….but knew that was simply one piece to about a thousand piece jigsaw puzzle. I knew he had Autism. I knew there was something more going on than a mild hearing delay that tubes would take care of but man did I leave that Audiology appointment some kind of UPSET.

I prefaced the whole appointment with, “I have developmental concerns but I think there’s something not quite 100% with his hearing also and he’s had chronic ear infections.” And Caleb sat there angelically playing blocks while the audiologist put the probe in his ears to do otoacoustic emissions testing. Completely and beautifully tolerant of it all. And then we tried sound field testing…..which was a disaster. He was young and unconditioned to what he was supposed to do so that’s not really a shocker. But it was….”off” still. He wasn’t responding to much, if any visual or auditory stimuli in the environment…..he started running around…..aimlessly. And when the appointment was over the audiologist told me she thought Caleb would benefit from tubes……and that she thought I was right to pursue developmental testing for him.

That’s all she said. It was simple, short, and casual. She never said Autism. I signed some forms and left with a pit in my stomach. Here I am, the pediatric speech pathologist, who’s been trying to convince everyone in Caleb’s life that he has Autism, who knew that he needed tubes but also another decade of intensive supports…..but when someone else who wasn’t me agreed that he needed a developmental assessment, everything suddenly became real. Someone else noticed that something was wrong and after months of thinking that I would feel so much better if someone else saw what I saw….when it actually happened, I suddenly felt sucker punched.

On that drive home I cried and used my defensive “you don’t know me or my child!” voice out loud to myself. My safety net had been pulled, and everything I was worried about was no longer a worry, but now my new reality.

I also resented her a little bit for giving me that moment. I shouldn’t have- she’s fantastic! If you need an Audiologist in the Greensboro area who’s great with children, she’s who you should 100% go see. But she was part of the moment that changed things for my family and I will openly confess, that I threw the first few brochures that came from her office immediately into the trash because it stung a little bit.

So, I understand if you get defensive the first time someone brings up developmental concerns to you abut your child. I also understand if you become annoyed when they bring them up again later. But I might also guess that it’s hitting you a little close to home because maybe you’ve felt those things too. It’s hard when stuff gets real but the acceptance of an unanticipated reality with our children is one of the greatest gifts we can give them.

Love and Autism,

Erin

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

Tooth Brushing Tips

Sometimes, having Autism can make it more challenging than not to stay so fresh and so clean clean (I hope you sang that along to the tune of the pop hit of 2000 by Outkast as it was my intention for you to). There was a period of time when Caleb hated baths. Hated them. It was a sensory thing. I hadn’t put everything together about him and Autism yet and at that point that was really the only thing sensory-wise that stuck out about him and since he liked playing in the pool, I decided it was behavioral. As hindsight tends to be 20/20, I think that was Autism trying to tell me something then, not him being non-compliant about having hygiene forced on him. I don’t have good advice on that one because I’m not ashamed to admit that I probably didn’t help him with the most appropriate approach then because I didn’t realize what was going on. These days, bath time is his favorite time of day and he has no qualms about having water poured over his head to rinse shampoo, washrags exfoliating his behind the ear crust, etc. Tooth brushing though- now THAT was a different story.

But again…..not always. Caleb’s sensory difficulties and stims emerge almost randomly, are intense for a hot minute, but resolve fairly quickly. At least that’s how it’s played out so far. Example, he used to visual stim HARD off of tearing paper. So I lost a lot of kid’s books in his room. Now, he’s been carrying around a pack of “first words” flashcards for 3 weeks and they’re all in pristine condition. Brushing his teeth wasn’t always a “thing” for him but about 6 months ago he decided he HATED it. He also took on some oral defensiveness in general. Brushing his teeth, having his face wiped, getting medicine, etc. Now I know some of you may read this and say “Erin, toddlers don’t love these things, in general. What’s the big deal about your kid not liking it?” To which I would reply, “I’m going to assume you’ve never taken on the challenge of brushing the teeth of an orally defensive toddler with Autism who has a limited verbal vocabulary because it’s the equivalent of how you’d feel if Neptune rose from the sea and came at your mouth with his mighty trident.” Bless your heart.

Here are some quick tips on how we said “Take that!” to brushing our teeth!

1. Consistency

No, you don’t get to just not have your teeth brushed because you don’t like it. Honestly, this helps- once he realized that this was in fact going to be happening every day of his life, I think he realized his energy and efforts would be better utilized to take me to task on something else I’d be more likely to give in about.

2. Vocabulary

We talked about it. In single words or 2 word phrases that he could understand. We made sure we knew body part vocabulary- especially vocabulary involving the mouth and the vocabulary involved with brushing your teeth. Here are some body part vocabulary ideas for you. We didn’t do this, but I’ve since discovered some Pinterest play ideas that promotes more positive and fun connotations of tooth brushing to help get kids comfortable for it to happen to them. Check those out, as well as visual schedules for tooth brushing here. Remember how helpful visual aids are for kids with Autism!

3. Control

I think Caleb didn’t appreciate that I was the only one who got an opinion about what was going to happen to his mouth and when it was going to happen. So we started using 2 toothbrushes. They were both child friendly but I used one to actually brush his teeth and he used one to play/explore around in there at the same time. So, instead of me torturing him against his will while he stood there passively, he got to be an active participant. Now that’s he’s comfortable and confident around a toothbrush, I let him brush his teeth independently first and then follow up myself with a good scrub, which he compliantly lets me do without hesitation now.

4. Approach

If I were to simply drag him in there and show him a toothbrush when he was in the midst of his aversion to it, I guarantee it would have gone nothing but TRAGICALLY. I had to prepare him. I told him it was coming during his bath and while we were getting pj’s on. I used a calm, pleasant voice. I didn’t threaten him with the toothbrush. I made it playful. That’s how we got through baths at one point. Daddy used the shower poof to play tickle monster all over him which inevitably would crack him up and give him a little sensory input and he’d end up having a few seconds of fun, which gradually increased to an entire bath time of fun! The same worked for us for tooth brushing. And I never forced his jaw open. What better way to reinforce an aversion?

5. Toothbrush Selection

It really did matter. I tried manual toothbrushes that had ninja turtles, Jake and the Neverland pirates, all of the characters. No go. Then I tried an electric toothbrush to provide extra sensory input to his mouth- YES!!!! NOW we were onto something. He liked how it felt, I liked that it was easier to manipulate because it moved on it’s own better- we were getting closer. Then, while I was grocery shopping at Kroger one day, I found our game changer. Background on Caleb: OBSESSED with stickers. Like….I’ve spent a lot of time scrubbing them off my living room hardwood cause he loves them so. Back to the story: I found a child’s electric toothbrush that came with stickers for you to decorate your toothbrush with! What better way to make the dreaded toothbrush our new best friend!?!?!? It worked. For real, ya’ll. Between that and the calm, consistent approach with instructions given on his developmental level that I made sure to pre-teach him beforehand, we conquered tooth brushing.

While we enjoy brushing our teeth now, we’re by no means masters yet. We’re getting ready to upgrade to a new toothbrush that has the red and green lights on it to tell you to keep brushing versus when to stop so we can spend more time in there. We’ve also never been to the dentist but plan on going for the first time this summer (but I started planning this summer dentist trip back in the winter cause you know…….Autism).

Grab that Spiderman electric toothbrush, a tube of Tom’s toddler training paste, and prevent those cavities! I’ll let you know how we progress and promise to record all shenanigans that ensue when we’re brave enough to break out floss for the first time……………..

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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