The Denver Autism Wheel

PatienceI recently got a question about feeling feel less patient than one would admit to, and I thought it deserved some attention. What do you do when your patience runs out? As the parent of a child with special needs, it has been my privilege to grow as a patient person, not just because I was the mother of a toddler, but because he didn’t speak until he was four, couldn’t eat solid food until he was 28 months, didn’t potty train until his younger brother started showing him up. In other words, I became more patient when I started to realize we weren’t on my schedule anymore.

A wise Tweet once said “worry is imagination aimed in the wrong direction.” I believe patience and imagination work together. It is our ability to imagine the positive outcome which allows us to be patient. And it is our ability to worry about the negative outcome which makes us impatient.

So here are some tips to encourage imagination and grow in patience, which worked for this mom in the trenches.

Be realistic. Chris was my first child, so he didn’t have any competition when it came to toilet training. I was at home with him, so there wasn’t a daycare pushing him. He got to it when he was good and ready. And that’s not a bad thing. Evidence now indicates that toilet training a child before he or she is ready can lead to other problems down the road. Yes, it’s expensive to keep buying training pants and night-time diapers for a large toddler, but rushing training only increases his or her anxiety about other things later on. As I mentioned, you’re not on your own schedule anymore. It’s OK to wait.

Imagine the worst possible outcome and make peace with it. Really, it all comes down to the way you look at it. When it came to solid foods, Chris couldn’t keep them in his mouth without gagging. Anything with texture would trigger his gag reflex. So there he was, going on 2 and a half years old, still eating baby food. Worst-case scenario? He’s in high school, drinking strained peas from a Thermos. Looking at it a different way, that sounds like a smoothie. So he drinks a lot of smoothies… Another scenario, riffing on toilet training again. Worst-case scenario? He’s off to his senior prom, wearing adult diapers. Looking at it another way, there are plenty of adults who wear them because of bladder conditions, traumatic injury…who knows except the individual with the condition? So even if that was the worst case, it’s not THAT bad. So face the worst case. Chances are good that the absolute worst-case scenario isn’t going to happen. If you can get OK with the worst-case, and the actual outcome is not the worst imaginable, you’re over that hump, and it’s a relief.

Have a good, private, cry when you are really sad. Being tired and frustrated wears everybody down, but understand that you can let it out, in a private space (like in your car, parked in the garage or outside where your kids won’t see you losing your mind). It’s human to experience a wide range of emotions. You don’t have to be happy-happy all the time. That’s a little twisted. But you don’t have to drown in stifled unhappiness, either. You’ll end up reacting badly, taking out your frustration on people who don’t deserve it. Then you’ll have that to deal with, too. Having a good cry is actually a normal and healthy way of letting that emotion vent a little. Crying can make you feel better (thinking about it just now, sobbing forces you to take deep breaths, which helps calm you). This is important, though: don’t let your children feel they are the reason their parent is sobbing uncontrollably…that’s scary and sad for anybody, particularly little kids.

Reward success (this includes rewarding yourself). I can’t tell you how happy I was when we went through our first “dry night.” We had a nice treat that day. I believe we had spaghetti for dinner and marshmallows for dessert (Chris has been a hollow leg ever since he got past the solid food problem–which he did get past at about 28 months, BTW). We didn’t go nuts or anything, but we did celebrate. Give yourself a treat, too: what do you like? Ice cream, manicure, book? Doesn’t have to be extravagant, but it should be meaningful, from you, to you.

Recognize your child’s successes for what they are: a unique individual’s growth and progress. Sometimes progress just sorta comes; sometimes it takes determination, repeated failure and persistence. Always believe your child can do what he or she sets out to do. Your confidence is their buoy. If you think they can, they’re more likely to think so, too.

Never, ever compare children. It isn’t fair to anybody in the picture. It’s tempting to compare children of similar age, or even siblings because they’re family. But it isn’t fair, particularly if you know you are raising a special needs child. There may be things that child will just never be able to do. It doesn’t mean you give up and stop trying to improve your child’s life. But it might require some creative thinking, collaboration with other parents or professionals who might have ideas, tools or techniques to work around what your child cannot do. And keep in mind: there are other things that the same child is brilliant at. Celebrate the brilliant.

Hello, everybody! I have had a few requests to repost this article, so here it is. We’re a little over halfway through sixth grade at this update, and Chris seems to be settling in to middle school after a bumpy start and a whole lot of hardworking people (especially him) making a huge effort to make this work.

So here’s the repost, without further ado…

So we’re getting ready to make the transition to middle school next fall. If you’re reading outside our immediate South Metro Denver area, elementary school is K-5 here, middle school is 6-8 and high school 9-12. So there’s a big shift on the way next year, and I started figuring out where we were going early, so we were able to throw the dart with confidence in January, after Winter Break. Here’s what I looked at for middle school.

I wanted a school that was big on integrated classrooms. The school we chose has a wide mix of typicals and SpEds in the classroom. If a student needs para support, they fade the adult as much as possible because they get it that “it’s not cool for a kid to hang out with a grown-up all day.” They try to mainstream kids as much as possible, so you don’t end up with a room full of SpEd and a room full of typical. I prefer it that way for several reasons: I don’t want the SpEd kids to stick out (more than they would ordinarily) because the typical kids don’t see them much during the day, and I don’t want him to lose contact with the typical kids who will be going to school with him from his elementary school.

I wanted a place that would help him shine at what he likes. There’s only so much any kid can stand not being remarkable. Everybody is awesome at something. Chris happens to be good at building stuff, and the middle school we picked has both wood and metal shop along with computer-aided drafting and animation. Cool.

I also wanted to pick a school Luke could move into. We ended up going with our neighborhood middle school, so Luke will have classmates there as well.

And we wanted to keep the great relationship we’ve been building with the District. So I spent some time talking to principals and SpEd staff, visiting the schools and taking a tour (far more tailored information than the “prospective parent night” session, and the staff are very nice and willing to walk around campus and talk up their schools).

So, it will be a big transition. But we’re starting off right, I think, with a lot of communication, a lot of advice, a lot of listening. We’ll start bringing Chris to these meetings soon, so he can start getting a handle on lockers and passing periods and homeroom and whatnot. But it’s a start.

It’s a pet project of mine to learn more about the creative writing process (I’ve been a journalist, a blogger and a technical writer many years, but I have not tried my hand at fiction), so I got a book on writing believable characters based on personality profiles, and amongst them, I found a profile for a person with autism and nearly swallowed my gum when I read some of the assumptions (the book was written by a writer who is also a psychologist, BTW).
Now, before I elaborate on these assumptions, it is worth noting that the copy of the book I have was published in 1999. This was the year before Chris was born, and I say with some pride that a lot has changed in that time, regarding theories of parenting children with autism, psychological approaches to autism and our medical and scientific understanding of what it means to live with autism in a predominantly neurotypical world. However, there is a long history of research into autism which has confused the lack of ability to communicate effectively with the lack of desire to communicate effectively. These are historical misunderstandings about autism, and history is tough competition.
Assumption 1: the person with autism dislikes social rules, behaves disobediently and defiantly. It has long been my experience that it is quite the reverse. Individuals with autism appreciate social rules and try very, very hard to follow them. Rules make unpredictable social moments more predictable. And it’s that effort to adhere to social rules that often makes teens with autism the target of abuse and bullying because they don’t know that their peers expect them to follow adolescent rules that dictate they defy the adult rules. My retake on the assumption is this: the person with autism relies on social rules to help establish context but can behave unexpectedly if the rules he understands come into conflict with one another.
Assumption 2: the person with autism is not deterred by fear. Studies have established that a staggering majority (over 80%) of adolescents with autism also suffer from anxiety and/or depression. A lot of the anxiety I’ve seen 12 year old Chris display has to do with misunderstanding context or nonverbal cues. He has always hated attracting negative attention to himself, and that includes becoming a spectacle because he’s having a tantrum. It’s humiliating to him to lose control of his emotions in front of others. So again, it is my experience that the standard is actually the opposite of the assumption: the person with autism is routinely deterred from expressing himself or engaging with others because of fear.
Assumption 3: the person with autism is mistrusting and untrustworthy; lies. Chris does not lie. There are really good reasons for it. 1) Lying is breaking social rules, 2) Lying requires an understanding of what makes a plausible lie, and he lacks that skill (he tries to lie sometimes, and it’s completely apparent that he doesn’t know how to make a lie work), 3) Lying does not make logical sense; it requires a moral flexibility that is way too much work to be practical for him. And as for trust, he has to trust people to be honest and kind to him. It takes an act of deep betrayal to teach him not to trust a person, and most people don’t have the heart to do that to him. So, again, the observation that belies (hee hee) the assumption, is this: the person with autism is genuine, trusting others even to his own harm.
Of course, it was telling to read this profile, offered by a mental health professional over a decade ago. Keep these facts in mind:

  1. 1 in 88 children is affected by autism
  2. Boys are 4 to 5 times more likely to be affected
  3. If you know 7 people, the odds are that one of them is personally connected to autism

Part of the revelation to me was that these assumptions might still sound reasonable to the other 6 people who aren’t personally connected to autism. Considering the coverage of a recent school shooting, where reporters bandied the idea autism was a contributing factor, misinformation still abounds. Fortunately, our community of self-advocates, parents, providers and educators stepped up to dispel those myths. Individuals with autism are far more likely to be the victims of premeditated acts of violence than the perpetrators. Period. One of the reasons I keep writing and posting and acting as an advocate for Chris is to try to change these mistaken assumptions. We are all on a similar path, and the more we are able to reach out to others, the greater our understanding.

I just read an article that states once again that parenting is a full-contact sport. Not only is it important to sign your kids’ report cards and drive them to soccer practice. It’s also important to look at their beautiful faces once in a while. Here are some of the benefits of eating meals with your kids.
1) You stand a better chance of being able to talk to them about what’s important…to them. The other night, I got to hear all about the advantages of playing Minecraft in “survival mode.” Who knew? It’s not that I’m going to go play the game or anything, but Luke wanted to tell me about what he’s up to, and paying attention to him means he understands he’s important to me.
2) You stand a better chance of putting something nutritious in their mouths. The article I mentioned at the beginning of this rant is in US News and World Report today. It explained that kids mimic their parents’ eating habits. OK, that makes sense, and it benefits two generations: parents, who eat better foods to set a good example for their kids, and kids, who base their eating habits on what they see their parents eating.
3) You get good food into everybody. I’ve written about this before, but the grownups eat the same thing the kids eat at our house. In one context, it sets the bar for me to make sure everybody gets their fruits and veggies and lean protein. In another, it keeps me away from processed, pre-packaged meals because, while they’re easy, Karl makes faces at them. Because they tend to be high in fat and preservatives, they aren’t healthy for his middle-aged adult body. If he doesn’t want it, I don’t feed it to any of us.
4) You get to look into their beautiful faces during the whole meal. I don’t know what your house looks like, but mine has people working, doing homework, playing musical instruments and sports, going to meetings, going to sleepovers…there’s not a lot of face time. Except at dinner (and most breakfasts). These moments are phone-free and distraction-free. We talk about our day, we talk about our meal, whatever. But we’re all there, face to face. I know the kids don’t see it this way, but as a mom, I cherish these times because Chris is 12, and I only get him for another…gulp!…6 years. So, another benefit is…
5) You know where they are during that meal. Not just physically, because, yes, we’re all sitting around the same table. But mentally, too. We get to hear about science projects, homework assignments, the gossip in the fourth grade classroom or the sixth grade hallway. That’s priceless intel when you want to get a picture of your child’s world when you’re not around. And: it sows the seeds that you’re approachable, in case they need to talk about something worrisome or bad. You’ve already established that their world is interesting.
6) You establish the expected behaviors for the kids when they are at the table. Social cues are not organic, particularly for Chris, but also for Luke. And manners count at the table. This is an important place for both the autistic and the typical kid to learn social skills together. And sure, they graze when they get home from school (a mouthful of cereal here, a handful of grapes there), but mealtimes are for sitting down, sitting still for the whole meal, eating with utensils, speaking clearly and quietly, and keeping your elbows near your body. That way, we are in better shape if we visit relatives for dinner or go to a restaurant. They already know how we expect them to behave when the food arrives.

We are nearing the end of another eventful year. At my household, Chris entered middle school, a trial by fire for any kid, amplified by a foundational lack of understanding about what his typical peers are up to at any given moment.

But looking back on the year, I have some specific wishes for the people who make a difference in the lives of families affected by autism.

First, for the teachers: I wish you that moment of clarity a student has when he really *gets* what you’re teaching. I wish you that flood of new realization and confidence in his eyes, that gratitude he feels that you showed him exactly which tools he needed to solve the problem. I wish you the knowledge that you have become the teacher he will remember fondly when he tells his own children about the importance of a good education.

Next, for the paraprofessionals: you see our children at their worst and have to try to make it better. You carry the bruises from the tantrums, you have to write the notes home to frustrated parents, you help bridge the gaps between teacher instruction and student understanding. And you keep coming back when others would have thrown their hands in the air and walked away. For you, I wish gratitude. I wish for parents who cherish your insights when they are not at school with their children. I wish you the respect of the teachers who don’t have the time or experience to reach your student.

For the nonprofit staff members and volunteers: I wish you the knowledge that what you do is valued and appreciated far beyond your average client’s ability to pay it forward. The light you shine on research, advocacy, support and awareness gets us where we are today. And families five years from now will be even farther down the path you are paving now. We are building better lives for the people we serve, even if those people aren’t capable of expressing their gratitude for your help.

For brothers and sisters: I wish your stuff to be right where you left it and in the same condition as the last time you saw it.

For parents: I wish you two moments:

  1. The moment your child opens *that* gift. You know which one it is. It’s the one you know in your heart of hearts is the thing they cherish, and I wish you the look on his face as he realizes you understood what he wanted. Even if he couldn’t tell you about the big ol’ bucket of Legos or the bicycle, it’s OK. You got it, and you got it right. In our case, it was a wobbly 100-year-old mantle clock he will doubtless have to take apart, clean, repair and put back together at some point. But for now, it chimes the hour and the half hour, and the pendulum swings back and forth in its lopsided tick-hiccup-tock. And he adores it. And Karl just “had that feeling” when he took Chris to the antiques shop to have a look. I wish you the look on Chris’ face when he brought it in from the car and put it above the fireplace in the living room.
  2. The moment when the house is quiet because everybody is either asleep or hard at work. It’s the moment when nobody is clamoring for you because they know what they’re supposed to be doing, and they’re getting it done on their own. Nobody yelling, nobody throwing anything, nobody crying…just quiet and peaceful.

These are my holiday wishes. They are finite moments in time, priceless because they are rare and fleeting. But for those with eyes to see, they get us through those … other moments. Most of our lives are relentless in their demands, velocity and expectations. This holiday season, I wish you a calm in the storm, a moment to relax and rejuvenate. It’s all going to start up again before we’re ready for it, so while we can take a moment, I want to thank you all for your persistence, your courage and your strength. We are there for the people who need us, some of us because we made them and we love them, and others because they are trained in that capacity and possess the empathy and tenacity to keep coming back week after week.

ImageBy way of explanation, this is not a current situation in the AutieMom Kate family. But I’ve answered some questions lately about how to get an AutieKid good with the potty, so I thought I’d revisit some of those memories and share how we got here from there.

The typical age when kids train is 2ish. There is a LOT of wiggle room in that. Typi-kid Luke trained himself in one week, just before he turned 2. He and I had a deal: he could wear his Superman costume all day once he wasn’t in diapers (Superman doesn’t wear diapers, you see). That was all he needed: the right motivation. He was so excited about going to the grocery store or the library in his super suit, he was willing to learn to use the toilet.

AutieBoy Chris, on the other hand, didn’t learn until he was 4. Why? Didn’t have the motivation until then. I’m pretty sure he thought the rest of us were chumps, stopping our activity to go into a small room for a couple of minutes and then having to pick up where we left off.

So how did he get the motivation? The same way he learned to walk. We made him 🙂

There are 3 important facts to keep in mind when approaching toilet training:

  1. Kids get to it when they get to it, regardless of adult schedules or expectations.
  2. Once they get it, they get it. It seems like a big mountain, but you only have to climb it once for each kid.
  3. Unless there’s a significant medical reason for it, no kid wears a diaper to prom or high school graduation.

A couple of books were pretty helpful: topics like “potty training in a week.” The key there is the same as it is for a lot of milestones. Consistent expectations and taking the time to make a new activity a habit. A bit of a caveat: I was working from home at that time, so I was able to dedicate the time to this project. This method would be very difficult to complete successfully in a daycare setting without a dedicated adult, so keep in mind that it requires face time for several days (yes, days) to get this done. But again, once it’s done, it’s done forever.

One other qualifier in this explanation: Chris had very few sensory sensitivities or ritual behaviors. While it took him longer than Luke to get used to the new policy about the toilet, we didn’t have to contend with a rigid adherence to his established expectations, and he wasn’t skittish about the sounds or feelings associated with the process. We did have a calm and positive environment for toileting and took our time getting there, and I think that helped. There were no negative consequences for accidents; we just started the timer again and put the wet underpants in the wash.

The books advised putting the potty in a common area (I chose the kitchen: tile floors for easy cleanup if necessary) and spending most of the day around toileting activities. I got a stopwatch and some “big boy” underpants for Chris. I also got him a good supply of apple juice and water, and finger food snacks. 20 minutes off, 5 minutes on. That went on most of the day. Yes, it was boring, but it was necessary. Yes, we had some accidents. When that happened, we started over. It took until the afternoon to hear the little sound in the potty. We celebrated and started the timer again.

Part of the process is associating fresh air on the body parts with relieving oneself. Chris was used to going while the diaper was in contact with his skin. It was a new concept for him, and it took some time to realize that it was OK.

By Day 2, we were up to 35 minutes off, 5 minutes on. He got better at it, and I’d lengthen the time by 5-minute increments. This process went on for about 3 days.

Once he got used to the idea, he was OK with it, and it became a routine. By about Week 2, we’d taken the potty top and put it on the big toilet with a step stool, so he could climb up. From then on, he was golden. He didn’t have accidents, he didn’t look back, and in retrospect, it seemed like a much bigger deal than it actually turned out to be.

You might know (well, you might not, but I do, so I’ll tell you) that the age difference between the boys is a little over 2 years. Luke hit toilet training at almost 2. Chris at 4. Coincidence? Doubt it. There’s nothing like a little sibling rivalry to git ‘er done sometimes, and this AutieMom isn’t averse to using whatever tools are available. Yes, it’s likely that part of Luke’s motivation was to train himself at the same time as his brother. And yes, it’s also likely that Luke’s success niggled Chris enough to get his rear in gear, so to speak.

The secret of my success so far: I just stick my big ol’ head in the door and introduce myself.

Hi: I’m Autie Mom Kate.

So we went to visit the middle school last week. I’d been there before, to talk to the SpEd coordinator and staff and otherwise stick my big ol’ head in the door. But this was Chris’ first visit.

I’d hesitated to really talk up middle school. I remember it as one of the most unhappy times of my childhood, and to read some of the popular fiction in the libraries lately, I’m not alone. My desperate prayer is still, “Please, don’t let him get locked in his own locker. Please, please, let the kids be kind and compassionate. Please don’t let him come home crying.”

But Chris ate it up with a spoon. He followed the tour, asked questions, cracked jokes. Granted, it was our first visit, so it was after hours, and not as part of a big group. He told me afterwards he’s looking forward to Art, Computer and Math. Not a big shock there. But he’s also looking forward to something very important: standing on his own two feet.

The school district has made it clear to us that Chris won’t have the constant one-on-one para support he’s had as an elementary school student. And, as much as that’s intended to sound ominous, he’s really excited about the idea.

Ambivalent Autie Mom isn’t so sure just yet that his anticipation is well founded. But I’ll give you this: he deserves the right to try. I asked him a while ago if he thought he could finish his schoolwork on time if he didn’t have an adult reminding him to get back on task (he can start assignments, but it can be hard for him to keep his focus all the way to completion). I was very impressed that I didn’t get the “automatic yes” he thinks will get people to stop talking because he said “yes” already. He thought about it, and then said, “I don’t know.” For him, that’s not adolescent dismissal. That’s a considered response. And it’s honest. He’s never had to do it on his own, so he wouldn’t know. That’s why I want him to find out: he deserves to know.

I’m pretty sure he won’t be good at it at first. It’s like any new skill: riding a bike, swimming, finishing a whole book. When he started on any of these skills, frankly, he was pretty wretched at it. But he had to do it. With the bike, we insisted. He doesn’t have balance issues, so we figured he would get exercise and mobility out of the deal. And yes, he was dismal at first. Didn’t want to, it was too hard, didn’t like falling down or being sweaty…but he had to do it, so eventually he did it. And now: he rides, he swims, he reads. Just fine. He deserves that kind of…what, motivation? stubbornness? inflexibility? insistence? when it comes to his schoolwork. He’s just got to do it because he’s just got to do it. It’s not going to get easier as he moves through middle- and high school (hopefully college, grad school…).

And the kicker is this: now, he wants it, too. It’s not just us pushing. It’s him pulling, too. So my prayer has grown a little, to “Please, please let him get this, too.”

@ autiemomkate:

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 12 other followers

Older posts


May 2020