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Autism: Parenting “Failures” and Celebrating Milestones

I remember when our nineteen-year-old daughter, Kaylee, was starting Kindergarten, and we worked tirelessly to teach her to tie her shoes before school started. She aced the skill in no time and went to her first day of school with shiny pink and silver tennis shoes tied by her own hands.

Johnathan, our eight-year-old, mastered the skill at four. As with most things he learned early, he watched and observed and took in while we taught his brother, Scott, and then would come up beside us and just do whatever we were teaching his brother, who is two years his senior.

Scott, though, just couldn’t do it. We tried and tried to teach him until he was frustrated and we were frustrated. After months, we just quit trying. We didn’t see the point in frustrating him and frustrating us over something that he simply, for some reason, could not do.

tae-kwon-doWhen Scott started Tae Kwon Do, we were able to teach him how to tie the first part of his belt, but not the second part (the one that forms the knot). That was probably the most frustrating, because it is the same motions. There wasn’t even a logical reason he couldn’t do it. Even at 10-years-old, he brings me his belt to tie onto him.

Sweatpants that tie at the waist have to be tied loose enough that he can pull them down to use the bathroom at school, but tight enough to keep from falling down on their own.

And — we buy Velcro shoes or Crocs. Period. If they can’t be slipped on or fastened with hooks and loops, we didn’t buy them for him.

I’ll be honest and tell you that this is an area I actually felt like I’d failed in. The older he got and the longer he went without being able to tie, the more I wonder if not forcing the issue would hurt him in the long run.

As with so many “symptoms” of autism spectrum disorder, when we were filling out all the forms and questionnaires in seeking the “official” diagnosis, we were amazed when we came across a section about tying shoes and tying knots. Suddenly, the fact that he couldn’t tie his shoes made sense. Obviously, it’s part of the spectrum like his sleep issues and his wandering away issues. We hadn’t done anything wrong! We hadn’t perpetuated a situation by continually trying to the point of frustration! It must be a developmental thing within the spectrum.

I cannot explain to you the relief we feel as parents as we have constantly received affirmation of symptoms that explain areas where we felt like we failed as parents. Our 10-year-old brilliant child couldn’t tie his shoes, and we quit trying to teach him. We’d added another check next to the failure box.

But once you understand that it isn’t you – your parenting – that it’s his brain and his development, it’s like this box of power is opened up. Okay! It’s autism! It’s a multiple step process for a brain that can only process single steps! How, then, do we come at it in a different angle so that he can learn how to do this in a way that makes sense to him?

For the tying of shoes, it meant turning to his occupational therapist — someone trained to teach children on the spectrum how to tie shoes. And, you know what? It took her about six weeks to teach him. SIX WEEKS.

That little check next to failure just got completely erased.

Here is our boy tying a shoe by himself for the first time, at 10 1/2 years old. Celebrate with us. This is a pretty big deal in our family.


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Autism: No Help

scottI recently took our son Scott to a local autism clinic with the intention of getting some guidance and insight into how to properly prepare him for the vast world out there.  We were placed on the waiting list for this place within a month of our December move to Fort Knox, and I was excited when we finally got an appointment. The first thing the psychiatrist asked me was, “Why are you here?”

I answered the same way I did at the Cincinnati Children’s Hospital (which is, sadly, too far away from us after our move to be able to utilize), “Because he’s ten. He’s more than halfway to grown up. Everything we’ve done has been intuitive, without professional guidance, and self-learned. What if we’ve done something wrong? What if he’s unable to handle life as an adult?”

Thus began our interview session. When she asked about chores, I explained that I make a chore list every morning (in the summer). Both boys – Scott (autistic) and Jeb (normal neuro-typical) know that screens go off at 9AM, and before anything “fun” can happen, the chores must be completed. I don’t have to remind them to do chores. I don’t have to manipulate them to do chores. If they intend to have anything happen in their day, they know to check the chore list and start working on their assigned 3 chores. He gets the same kind of chores everyone else does, and has to perform them.”


The psychiatrist said to me (no joke), “You don’t have to remind Scott to check the list? I may need to you to come here and teach a class to other parents.”

She asked about eating issues. I said, “I think Scott wants to have issues with eating, but before we knew he had autism, we just parented him like our other children. Which means, food is not an issue. Dinner is dinner, and children can choose to eat or choose not to eat. Everything on the plate must be tasted and milk must be consumed. Those are our only rules. In the times that Scott might have an issue with something, he typically knows how to help himself to more salad, pick out good proteins and eat what he can. If there’s still hunger, he’ll typically help himself to the unregulated fruit bowl after dinner. But, he has a good palate, he knows how to order in a restaurant, he’ll taste anything, and he eats well.”

The psychiatrist remarked, “You don’t have food issues? I may need you to come here and teach a class to other parents.”


She asked me about sleep issues. I said, “We’ve worked with the sleep clinic in Cincinnati, and discovered that Scott’s issues are less sleep related and more ‘needs time to mentally wind down’ related. So, we gave him his own bedroom, a low-light lamp, a beanbag, and he gets to ‘go relax’ rather than ‘go to bed.’ His entrance into bed is self-regulated, and as soon as we stopped making a big deal of ‘go to bed!’ or ‘go to sleep!’, his wind-down time has been cut down from two hours to one hour a night.”

The psychiatrist said, “You successfully battled sleep issues? I may need you to come here and teach a class to other parents.” (I know it sounds as if I’m exaggerating, but I assure you, I am not.)

She asked me how we handled discipline. I said, “We try to examine each situation and as ourselves: is this disability, or is this discipline? The answer, when apparent, makes our response easy to determine. A meltdown in a crowded restaurant will result in comforting and removal, while lashing out physically at his brother will result in punishment and discipline. We know that sometimes it’s hard to tell what is which, and we know, going into it, we’re going to make mistakes. But for the most part, it seems to have worked.”

She asked if we worked with a reward system. I said, “We have an expectation of good behavior. I’m not going to reward good behavior. I expect it. Instead, I discipline bad behavior.”

She raised in eyebrow. “I may need you to come counsel some parents.”

scott computer tieShe asked me how we handled issues as the cropped up. I said, “He has a hard time with step-by-step instructions, so we learned that story boards teach him way more than anything verbal. So, we started utilizing story boards when we need to give him multiple step instructions. We understand that in interacting in the world and away from his ‘safe zone,’ most of the time, he’s just either writing a script or following a script. But since that’s how he will have to cope with the world as an adult, we don’t allow him to escape into his world when we need him to stay in ours. He mentally pulls out the proper script and he copes with the situation, acting and reacting the way he’s been taught.”

Again, she said, “I may need you to come teach a class to other parents.”

The interview ended with me leaving without any help or support from this clinic. They basically manage medication, provide speech therapy to non-verbal autistic kids, and train parents to do what Gregg and I have, apparently, done intuitively. In a way I’m frustrated. In a way I’m relieved. We don’t medicate. We train. Scott’s life isn’t going to be full of therapies and appointments — something for which we were mentally prepared; however, everything still has to happen with self-education and a whole lot of prayer.

I’m thankful for the resources we’ve had access to as we’ve maneuvered through the minefield that is autism parenting, and I’m terrified every day that we’re going to do it wrong — that we’re going to damage him in some unrecoverable way and ruin his adult life. Having outside help made unnecessary or unavailable certainly makes our reliance on the Holy Spirit much more tangible.

Perhaps that was God’s plan when He set us on this journey. To rely fully on Him and not on man.


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Autism and Playing Catch-Up

annaliseMy sister-in-law found out during her pregnancy that the baby she carried had Down’s Syndrome. By the time our niece, Annalise, was born, she and her husband had several weeks to prepare, plan, and equip themselves as they began the journey of parenting their daughter. They had occupational therapists when she was just an infant, a team of doctors, and the combined knowledge of decades of medical research to aid and assist them in their process.

With our son Scott, rather than an ultrasound that led to more testing, we had years of symptoms that were then compiled and (at times arbitrarily) analyzed over the course of months before we finally received a diagnosis: Autism Spectrum Disorder and ADHD. The original diagnosis read:

Autism Spectrum Disorder manifested by issues in reading and auditory comprehension,  issues in interpersonal relationships, and issues in sensory processing with an above average raw intelligence

We didn’t have months or even weeks to prepare ourselves with how to go about parenting this child with a brain that doesn’t operate on the same level as ours. We spent a couple of years just playing catch-up in how we ought to parent with the goal of teaching him coping skills to equip him into adolescence and adulthood after years of not knowing exactly what to do or how to do it.

In fact, we still don’t receive any kind of guidance or education from anyone other than ourselves. As we received the “official” diagnosis (when Scott was 9), we moved and had to be placed on a waiting list. Seven months later, we finally have our first appointment (in July) at an autism clinic local to us, and we will begin the journey of learning all that we don’t already know.

wanderI remember that the first time I saw an autism infographic claiming that 49% of children with autism have wandered outside of the home, I started crying. I couldn’t believe I didn’t know that Scott’s tendency to wander away is actually a result of his autism. I thought I simply was a distracted, bad mother who had lost her young child one too many times in crowded, public places. By the time he was 3, I didn’t go anywhere like parades or public parks or public swimming pools, because I knew I would ‘lose’ him. If I couldn’t have one of my boys (Scott’s brother is almost 2 years younger than him) in a stroller while wearing the other one in a baby carrier, I didn’t go.  I kept our front door latched at all times, because if I couldn’t find him in the house and the front door was still latched, I knew he was either somewhere I hadn’t yet looked or outside in the fenced in back yard.

wearing boysI feel sometimes like we’re still having to scramble to catch up with new information and how to how to apply it to our son.

That said, I think it works both ways, too. If we had known Scott had autism going into his learning how to eat table food, for instance, it probably would have absolutely altered the way we dealt with eating at our table. Our rule is basically, if it’s on your plate, you must taste it. If you don’t like it, have more salad and eat an apple. I cook whole food with lots of flavor and spices and a diverse menu.

Because we tend to take such a firm stance with food, even when Scott’s issues about food touching or textures try to interfere with his willingness to taste something, his learned coping skills come into play and he gives it a go. As such, he has a well-rounded palate, a healthy appetite, and will taste anything. He knows how to order from a menu, knows how to dish up a salad at a salad bar, and looks forward to dessert.

It’s possible that our attempts at parenting him like a normal neuro-typical child for the first half of his life really helped set him up for more success in his future than he might have had. However, I can’t help but feel like we would have been stronger and more effective parents had we been better prepared and more equipped. I think it would have been nice to have an ultrasound then further testing, to then be handed a packet of information and resources that would aid us going into his life rather than spending the first 5 years in dismay over symptoms and the next 5 years after that clambering to catch-up with research and education.

It would have been nice to know that an autistic child has a tendency to wander away, so it’s best to keep that in mind when child-proofing your house or taking him out in public long before the frantic search of a Chicago mall that resulted in the longest 7 minutes of my life.

This whole journey at times seems to be this experiment in right or wrong parenting choices. We face so many issues with the question, “Is it disability or is it discipline?” Because how we handle situations will depend on that answer. Unfortunately, so often, the answer is, “I’m not sure,” which means we just have to close our eyes, pray, and step forward and parent the best we know how.

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Autism Parenting and the Most Humbling of Lessons; Or: How I Fell in Love with the PE Teacher

kaylee awardWe have three children. Our oldest, Kaylee, is 19 and was a straight-A student through almost all of her schooling. Elementary school awards ceremonies usually generated multiple certificates and accolades .. including a Presidential award at the conclusion of 5th grade. In high school, we always received an invitation to the honor awards night, because she inevitably won something.

jeb awardOur youngest son, Johnathan, is 7. He hasn’t been in a school with an awards ceremony until now, but certificates of achievement came home in his folder every quarter since Kindergarten. We moved to this school 2 weeks before the end of the term, and he STILL received an award for reading in that ceremony that took place right after we got here. He is super smart and will likely follow in his sister’s footsteps.

Our middle son, Scott, is 9 and in the 3rd grade. He is our son with autism. School is hard for him because of so many variables. Fluorescent lights are bright, kids are loud, announcements are loud, chairs are hard, peer interactions are difficult to maneuver, and there is absolutely no patience with anything that has to do with the teaching method. He’s just a “show me how and leave me alone” kind of guy.

Report cards rarely reflect his raw intelligence, and he’s never brought home so much as a certificate from school.

Until this week.

When I got the notice that Scott would be getting an award in this last quarter’s award ceremony, I double checked the name twice because I expected it to say Johnathan instead of Scott. I even texted Johnathan’s teacher to make sure that the front office hadn’t notified me of the wrong student. Assured that this award was indeed for Scott, I showed up to the school with all of the other excited parents who’d received the same notification and waited through the first few classes. Then it was Scott’s turn.

scott awardWhen he was awarded the PE award, I thought that a mistake had been made. Scott has historically had a hard time in PE, because game rules and teamwork are concepts that don’t really compute for him. He also cannot do things like drop a tennis ball and catch it – he has to go to occupational therapy for upper body strength and coordination issues. So, a PE award kind of threw me.

But when all of the classes had received their awards and parents had access to their students, by the time I got to Scott, he was SO EXCITED. He could not stop talking about how hard he has been working in PE, and how he learned how to dribble a basketball with both hands, and bragging on how fast he can run. Seeing how proud he was, how much he knew how hard he tried, how he just glowed with excitement over this award, I absolutely fell in love with his PE teacher — a teacher I have never met and whose name I had to look up. Clearly, this teacher knows what he’s doing, and has a passion for teaching kids.

Autism_Awareness_RibbonI think autistic children so often get overlooked in big groups of kids. If they can be put to the side and just kept from melting down or being too much of a disruption, then some adults would consider it a successful class. But, each of these children is beautifully unique, passionate about the things that interest them, and desperate to have someone connect with them and understand how they’re perceiving this big confusing world. When that connection is made, miracles start to happen in their lives. In the case of Scott, he was able to accomplish, succeed, receive an award and accolade that his own mother — one of the two people on this entire planet who loves him more than anyone else could possibly love him — erroneously thought was a mistake.

It seems like this path of autism parenting constantly teaches me the most humbling of lessons. This week’s was a biggie. Don’t assume he’s unimportant to the adults who have charge to teach him. Remember all of the passionate teachers in your own life who always constantly and consistently went above and beyond, and know that God will place teachers like that in his life, too.

And never assume an award is a mistake. He has to work twice as hard as anyone who walks into that school. He deserves ten awards a day. Relinquish the thought that you’re the only one who sees that.


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The Stages of Parenting

My brother and his wife have a little boy who turned 1 in December. He’s SO CUTE. Now, I’m in my mid-40’s, and this is my older brother, so he had kids rather late in life. Recently, he had a social media post about people criticizing his parenting style –  he used to the term “helicopter”. I laughed and told him after the 2nd kid, the helicopter loses altitude and by the 3rd, it’s completely grounded.

kaylee scott veterans day 2006Since that conversation, I’ve been mentally thinking about stages of parenting. It’s such a gradual thing.

When they’re born, you can’t fathom ever letting them go. You’re afraid to take a shower for fear of something happening to them in those 10 minutes you can’t see or maybe even hear them.

You take them with you into the public bathroom stall even when they’re 3 or 4 or maybe even 5.

You go with them to that first birthday party and stay the entire time, with all of the other parents watching — hovering like helicopters — while their kids learn the social graces that come with birthday parties.

scott first day of schoolThey join forces with all of the other 5-year-olds in your world and start their first day of school. You stay, you hover, you worry about what they’ll do in the lunch room and if their teacher will misplace them and not realize it before something horrible happens to them and you keep your phone next to you all day, turned up loud, just in case the school calls. You know that call — the one that never came because your kid rocked the first day of school and all of the subsequent days after that one.

You don’t let them go to that first sleepover because you just don’t trust how they’ll do in the middle of the night without you —  but have one at your house instead — and only half the kids invited come because their parents are just like you.

20140502_071428_resizedAnd then you let them go to the birthday party by themselves. You trust that the other parents will make sure they survive the piñata and ice cream and pray that your kid isn’t THAT KID who spills his red Kool-Aid on the white carpet and tries to steal a birthday present. You make sure that the parents know your phone number and keep your phone next to you at all times, the ringer turned up loud, waiting for the phone call that signals that your child needs YOU and only YOU. You know that call, the one that never comes, because your kid had an awesome time at that party. Even without you there, hovering.

One day, your son goes into the public bathroom alone. And he’ll never know how you hovered outside of the door, listening intently, waiting to rush into the room at the first sound of distress or stranger danger.

jeb first day of schoolOne day, they go to that sleepover. And, you keep your phone on loud the entire time and wait for the phone call that something horrible happened while they were out of your sight at 2AM. You know that call – the one that never came despite all of your worry about it. And your kid comes home jabbering about all of the fun she had the night before.

Eventually, the sleepovers are just a part of life. And you have a house full of kids as often as your kids are gone from the house.

You realize one afternoon that you might not know all of your kid’s friends’ parents, and wonder if that makes you a bad mom or not.

kidsEventually, they get their permit to learn how to drive. And you’re sitting next to them the entire time, teaching them, guiding them, knowing that one day you’ll hand them the keys and they’ll drive away all by themselves.

You wonder how you’ll do it.

And then they do. And you keep your phone on loud and close to you the whole time waiting for that phone call from the state troopers. You know that call — the one that never came despite all of your worry over it.

You have them check in with you everywhere they go. Check in when they get there, check in when they leave. Check in when they get to the next place.

Then the day comes and you wonder where your kid is. Did she have volleyball practice or work? What was her schedule this week? Then you wonder if not knowing for sure makes you a bad parent or not.

Senior year, your child will beg to go to Fort Lauderdale for Spring Break and you think of all of those wild girl videos and documentaries of the horrors experienced by teenagers in the midst of Spring Break Fever and send her instead to a beach closer to family and friends.

kaylee graduatingAnd then they graduate from high school. And, the next day, you put them on a plane to fly to another continent for their class trip. And the whole time you’re filling out forms and getting passports and paying fees and attending meetings with the chaperones and teachers, you’re wondering how in the world you’ll drop them at the airport with their backpacks packed and their walking shoes on. And, you do. With dozens of other parents. And you stare at each other and wonder how you just let them all go. And you all check your phones and make sure those ringers are turned on and loud.

Two weeks later, your kid comes home with a bag full of souvenirs, hungry for your cooking, and memories that can never be replaced. And you realize they’re on that cusp of not needing you all the time anymore.

kaylee ft laudThen that time will come when she’s an adult with her own apartment and job, and she pays her own way to Fort Lauderdale for spring break and you have to just anxiously watch her social media posts for any signs of anything horrible happening. And you keep your phone next to you at all times, turned up loud, waiting for that phone call from the Florida hospital. You know that call — the one that never came because your kid is smart and you’ve raised her right.

Eventually, you just let them go. You gradually quit jumping when that phone rings. You begin to trust that they’ve listened and learned and taken in all of your wisdom. And you think back to those days when they were infants and you were afraid to leave them alone for 10 minutes so that you could take a shower, when your helicopter was high above and you could observe everything all the time.

And you say to younger moms, “Take the shower. They’ll be fine.” Even though you know that you’d do it all the same again, with the same worries and the same hovering, and that painful, gradual letting go.


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No More Candy for This One?

I am teaching tonight on how our family follows a Biblical diet, and was on my Hallee the Homemaker site pulling up some reference materials. I haven’t been over there in over a year, and found myself caught up in reading a few memories. Among them was this post.

Because this blog gets so much autism parenting traffic due to a few posts that have been shared in an amazing way out there in social media world, I thought I’d bring this post over here. It was published June 30, 2014.

No More Candy for This One?

emerilWe were in a museum in Washington D.C. this week, at the end of a long day. We’d started the day out standing in line for 2 hours, waiting to get a 30 second moment with Emeril Lagasse while he signed a cookbook, and it ended with this museum. Scott was overwhelmed with the day. Well, I don’t know if that’s accurate. Scott’s overwhelmed with the last 2 weeks. He’s not been home, he’s not been eating “normal to us” food, and he’s not in his secure little bubble. So, at the end of long days, we start losing him.

Meltdowns aren’t *really* a problem. They come and go, but they aren’t the norm. What Scott has been doing lately is muttering to himself and occasionally squawking, really loudly, while jumping up and bugging his eyes out. Then he goes back inside himself and starts muttering, then squawks – over and over again. What he’s doing is some scene from (I *think*) The Lego Movie, but I can’t be certain. It’s really loud, and people look at him like he’s lost his entire mind. But what it is, is HIS MIND protecting him from whatever stimulation is overwhelming at the time so that he doesn’t actually lose his mind.

So, the other day, at this museum, at the end of this long day in the midst of these long weeks, we were in a room that was wall-to-wall screens showing a beach landing in WWII full of lights and sounds and battle, and Scott did his thing. The guide in the room we were in glared at him at a moment of loud squawking and then looked at me and said, “No more candy for this one, right?”

I have to say, while I’m sure this Marine Corps vet wasn’t trying to hurt or anger me, he very much succeeded in me feeling a very sharp knee-jerk reaction (which I did not follow up on, that I just ignored while I grabbed Scott and tried to break into whatever world he’d sent himself into.) Instead of reacting or not reacting, I just sent him back to the hotel with Kaylee while Jeb and I finished the museum.

on the train in DC going back to the hotel after a day of site seeing
on the train in DC going back to the hotel after a day of site seeing

Dear world: It isn’t misbehaving. It isn’t hyperactivity. It isn’t too much candy. Or too much soda. Or too little discipline.

It’s called coping.

It’s called an autistic brain coping with this incompatible world the best way that it can.

It’s called a REALLY GOOD kid in a REALLY OVERWHELMING situation who doesn’t know what else to do but go into a world where he is in control until we get him to a place that is dark and quiet and he can plug headphones into his tablet and escape all the way away while he watches some familiar show and resets to the point that he can deal with this world some more.

I KNOW that there are people who will read these words who have no idea what it’s like – and that’s fine. Make snap judgements all you want. But I urge you to keep sarcastic comments about apparent misbehaving kids to yourself. Because, as the mother of that boy, I’m fully aware of how it appears – as much as I’m fully incapable of putting a stop to it quickly enough so that it doesn’t bother you.

I also fully know that he isn’t deaf. Nor is he stupid. He hears everything — even in the midst of a meltdown — and understands every word that’s said.

And so do I.

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