Opinion

1 in

by Tim on January 30, 2012

I will risk pissing some people off here because I think this has to be said.

The National Autism Association posted a PSA about autism a while back. Watch it and then continue below for more discussion.

Let me start by saying that, while I am tired of a great many things, after seeing that PSA I realized that I am particularly tired of two things in the world of autism right now: doom-filled ads and statistics, the former I’ve seen referred to recently as “autism doom porn.” I realize that both of these are intended as instruments for awareness raising with a public that knows little about autism. I still think they only serve to bring us all down.

1 in 110 is eye-opening. The progression from 1 in many thousand drags you into the downward spiral toward doom. 1 in 70 feels like a cataclysm.

Statistics suck. They can make the same thing seem wonderful or awful.

109 in 110 seems like a typo. 69 out of 70 sounds like great odds. Neither would do much more than leave you a little confused and scratching your head about what the big deal was. But that in itself isn’t my point.

Statistics seek to classify, group, and analyze things as objects. Those savvy to autism know what the first set of statistics above refers to. I could, however, just as easily have been referring to oranges or pretzels. Regardless, these numbers aggregate, classify, and simplify. We believe autism is much easier to understand when you sort it out like this. Of course, in the process you flatten all the diversity out of it and erase the personalities of every one of our children.

Some think this makes good TV and fundraising ad copy. At best I find that very, very debatable.

So on to my version of autism statistics. There are only two statistics that matter to me right now. I’m going to be obnoxious enough to say they should be the only two that matter right now period.

1 in 1.

1 in infinity.

If you’ve met one autistic person, you’ve met one autistic person. You haven’t met some 1 in 70 or 1 in 110. You’ve met 1 in 1.

They have a name. They have a personality. They aren’t a number. They have potential. They have feelings. They are wonderfully made. They are.

They are unique in all the universe. There has never been anyone else like them, and there never will be. They are the most precious gift of all. They are irreplaceable. They are 1 in infinity.

The other statistics may help raise money and supposedly make for compelling awareness campaigns, but they set a dangerous tone. We get caught up in this specter of doom, and that rarely does us any good. In fact, I think it’s destructive. We don’t need this in our lives. We know life can get really hard. We don’t anyone to tell us that. We need a different perspective. We need a spirit of hope and a way toward transformation.

I think these doom-filled ads work against the very changes we ultimately seek. The public have become numb to a generalized, widespread sense of impending doom. We get it from everywhere. People don’t get excited about causes where they are fighting some vague, nameless, statistical doom either.

Why do Heifer International, Save the Children, and Kiva – to name but a few – raise so much money and bring about such transformation in the world? Because you are buying a goat for a village, supporting a specific child, or helping fund a specific entrepreneur. You aren’t donating money to combat hunger or some vague, evil force in the world. You are doing something specific for one person or one village. You become involved in individual stories of transformation and hope. You become invested in their future.

When we raise awareness, we often want people to be as passionately involved in autism as we are. That’s rarely going to happen. We certainly can’t scare people there. We want everyone to join and fix the grave injustices we and our kids face. We’re asking for too deep and too vague an investment. We are the ones with all our skin in the game. The general population will never have as much at stake here as we do.

What do I think the answer is? Tell your story. Proclaim both your challenges and your pride and everything else. Speak of every joy and lament. Describe what it feels like when your child is finally able to do something that seemed impossible before. Become like the wandering storytellers of old. Share the whole, rich landscape of your lives together.

Tell your story to educate and inspire. Ask the person you tell it to for one thing, one thought, one action, one small something. Don’t ask for the world; just ask for one small step. At worst, we get one helpful act of kindness, one seed of good planted. At best, maybe we gain a committed ally and advocate. While none of us on our own can accomplish a task like “save the planet” or “fully fund disability services in every state”, perhaps all the people around us can achieve something like “the next time you see a child throwing what you think is a spoiled temper tantrum in the store, consider the child may have needs you aren’t aware of, and share a kind word or a helping hand with that parent.”

And that is how change begins, takes root, and grows. No one’s statistics will ever do that.

We need to see the 1 in 1. We need to see the 1 in infinity. We need to start there. Make a difference to one child. Celebrate the achievements of one child. Rejoice that we have been given the impossibly rare gift of each one of them. That’s how the world changes, not with this statistical doom porn.

Because each of our children is the only one like them. They only get one shot at life. We only get the gift of them in this world once. Let’s go act like that’s true.

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Steve Jobs and What to Give a $@!+ About

by Tim on October 7, 2011

I hadn’t intended to note the passing of Steve Jobs here, however as I thought about it, there are a couple of things that I believe are worth noting for parents and caregivers of children with autism.

Jobs and the creatives at Apple – quite accidentally – gave us an amazing array of new tools to address many of the challenges that come with autism. Single-handedly, Jobs and Apple rendered most of the infinitely-overpriced, clunky communication devices obsolete in two fell swoops with the iPod Touch and the iPad. While many companies who shall remain nameless are still charging $8,000+ for communication devices – which not-so-coincidentally has something to do with the limit of what Medicaid will reimburse for them – they are quickly being sent off into the corner where they belong by iDevices that cost a tenth as much but do significantly more than most of these inferior, price-gouged devices. Apple created the technology that is ushering in the end of that profane nonsense. [end soapbox]

In addition, they have provided us with endlessly extensible, multi-sensory, portable tools for education that are improving the way our children learn. They have given technology to the people, the application developers have jumped at the opportunity, and that has opened up untold possibilities to change the lives of children and their families.

But there’s a more important and personal point I want to make here. So many want to understand why he was such a genius and then figure out how to emulate him. You could copy him right down to the black turtleneck and mannerisms and not succeed at this for reasons I hope should be obvious. You can’t be anyone else; you can only be you. And the goal is to be the best you possible, something Jobs understood from the beginning.

Of the myriad articles about him, a particular one caught my eye because of one sentence. John Gruber at Daring Fireball is one of the most insightful tech bloggers anywhere. In his post in which he shared a particular memory of Steve Jobs, Gruber zeroes in on a specific ability Jobs developed throughout his life that I hadn’t thought about before. He says, “One of Jobs’s many gifts was that he knew what to give a shit about.”

I want to be able to do that. This may be my new life ambition.

Jobs was able to devote himself utterly and completely to what was most important to him because he ignored everything else that wasn’t. He refused to be dragged into trivial things that didn’t advance the ideas and products he was passionate about.

He once said, “The only way to do great work is to love what you do. If you haven’t found it yet, keep looking. Don’t settle.” We may think we have to settle as parents because of the constraints we believe our lives and responsibilities have placed on us, but I refuse to believe that even though I often despair not knowing how to live differently. But it comes back to that phrase I first heard from a beloved mentor of mine many years ago: “Never settle. If you remember nothing else I’ve taught you, remember that.”

Jobs also said, “We’re here to put a dent in the universe. Otherwise why else even be here?” I know you and I feel like many – or most – days we’re just trying to survive the period of time between when we wake up and when we finally get to put our head on something soft again. The difference between my belief that we can somehow live out our vision for our lives and the hard reality of the everyday creates a painful tension we live with each day, but I refuse to surrender the hope that there’s a better way.

His mission statement for life included a combination of “do epic stuff”, “do what you love”, “never settle”, and “leave dents in the universe.” If something didn’t fit in with that, Jobs gave no time or attention to it.

For us as parents of autistic children, this is one of the lessons we most need to learn. Every day, we are crushed by endless little details. By the end of the day, we look back and realize we have no idea what we accomplished that day. And this happens day in and day out. Our lives are buried under massive debris piles of things we want to do but that remain untouched, undone, and deferred until some future we fear may never come. All this does is add to our frustration and depression.

We, too, want to do epic stuff and leave a dent in the universe. We want to do something to change the world – or at least the autistic parts of it – but if you’re like me, you feel like you spend most days just treading water or forestalling your ultimate drowning.

There has to be a better way. There have to be clues about how to change the way we pour ourselves into our daily lives such that we can make a lasting mark on the universe. We often think that if we could just push ourselves harder and do more that would solve the problem. When we are more rational, however, we know better. We’re already pushing ourselves to the brink. We are only given so much energy. We have to decide what we’re going to do with it, and we have to do so with great care.

And this is where I think Jobs’s genius comes in. It’s not like he had some unlimited store of energy. He was finite, and the number of years he had on this earth were less than most of us will have. He just refused to give his precious store of energy to crap that didn’t matter.

I spent half the morning yesterday giving emotional energy to a bureaucratic issue with some paperwork for the J-Man. The solution was simple: sign the damn thing, say whatever else needed to be said, and move on with the day. If other people felt the need to expend a lot of emotional whatever about it, fine. That didn’t need to be my problem, but I made it partly mine. I chewed on it like an old bone. None of that was necessary. I was stewing over it instead of trying to focus on doing something far greater with my life.

And we all do this, all day long. We need to be aware that we do it and then focus on taking steps to stop. Decide every day what the most important thing we want to do that day is, then do it. All this other trivial stuff be damned. If other people want to make some petty thing more than it is, let them. You can’t stop them from doing it, but you don’t have to participate. Jobs gave not a whit about convention, politics, politeness, or social niceties. Your work is to focus on what is most essential to who you are, then be ruthless about it.

Here’s something I’m going to try. List everything you’re stressed about. Then look at each one and ask, If I don’t deal with this right now or at least today, is anyone going to, 1) die, 2) take my house, or 3) suffer irreparable emotional or physical harm? Almost nothing reaches this threshold. Many of these things are simply items you and I need to act on in some way, but not in a way that gives them any more of our emotions or energy than they deserve. Do them as they need to be done, then move on.

Then list what’s most important to you. These can be personal values, goals, projects you want to work on, etc. If you’ve ever created a bucket list, then feel free to incorporate that. I’m thinking more of starting with a list of what’s most important to me in the immediate term, but you certainly will want to develop a longer-horizon view of what’s important, too. Choose some things on the list you really feel drawn to right now, then list a few specific actions you can take to get moving on them. Then start moving.

Stupid things that don’t deserve our stress suck up many times as much energy as is required to actually address them. Worrying about other people’s emotional debris as part of it multiplies the energy sucking manyfold. However, when we are working toward what’s closest to our hearts, our own energy multiplies. Do what we love and make a difference. This should be our ultimate aim in life.

Easier said than done, I know. Believe me, I am a master of not following my own words. This isn’t so much an end but a practice – a call to trying to live a better way – lining up one action after another until something amazing comes to life. Our kids do this every day, learning and developing inch by inch until they reveal something wonderful that was previously hidden from view. They already know how. Now it’s our turn to live it.

I think this will be one of Steve Jobs’s enduring legacies: To become the person we want to be we have to commit, act, devote ourselves to this every day, and never quit on our vision. If we fail on any given day, we fail. We get up, put it behind us, move on, and try again. Eventually, wonders will come to life.

What is your vision for your life? What are you going to do to make it happen? What are you going to do right this very second? Go.

“Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma – which is living with the results of other people’s thinking. Don’t let the noise of other’s opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.” – Steve Jobs (1955-2011)

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There Are No Shortcuts – Ideas For Making Better Therapy Decisions

by Tim on August 14, 2011

This is a post about how we can make good decisions about therapies for our children. But first, I need to set the scene a bit.

The details of your story and ours may vary, but the emotions from which most all parents make decisions about therapies are very similar. I believe you’ll make better choices about therapies for your child if you grasp where you are emotionally with all this. Once you do, you’ll be able to decide from a position of strength and know what warning signs to look for, a list of which I include later in this post.

Our earliest days in therapy with our J-Man – starting with feeding therapy around nine months old – had one consistent theme.

We figured that at some point it would end. He’d learn what he needed to learn, and we’d move on. Therapy was merely a detour in his childhood development. He’d figure out how to eat and overcome his sensory issues, and we’d get back on the road with life.

Almost everything at that point sounded so foreign to us, as it does to everyone when they first get on this road. If it didn’t seem invasive or completely hokey, we at least considered it. We got him the various array of standard therapies for issues with names I’d never heard of, which was admittedly about everything at that point.

You always start out in near total ignorance. We did plenty of research and learned that a surprising percentage of people – kids and adults alike, including Mary and me – struggle with feeding issues, sensory overload, motor planning challenges, and the like. For a while, it was all very interesting, like some research project. The various things we read said he’d likely either grow out of his sensory and eating issues or retain some level of them, but with therapy and some effort he’d be able to adjust well. Sounded OK to us.

But we sorta skipped over the parts that said that other issues may be going on along with the sensory challenges. He was a loving child who’d been late on a few milestones – OK, so a lot of milestones – but no big deal, we thought. He was just having a lot of sensitivities and difficulty figuring out the world. A lot of us do. In hindsight, it’s easy to see everything we missed – or that we refused to see – back then.

[click to continue…]

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A Case for Kids Repeatedly Watching the Same TV Show

by Tim on June 19, 2011

The J-Man has a tendency to want to watch the same episode of the same TV show over and over again. I imagine this is not an earth-shattering concept to many of you, and it’s not for us either. But I got to pondering why, looking for something beyond the more obvious.

It’s also not earth-shattering news that autistic kids often engage in many kinds of repetitive behaviors and prefer to repeat familiar activities. I’m sure this plays an important role in why he likes chain-watching the same episode over and over. I believe there’s a lot more to it than just that, though.

To an outsider, this sort of behavior may seem ‘non-functional’. (Hey, I think we’ve talked about supposedly ‘non-functional’ behaviors not long ago!) There certainly are many situations in which watching the same TV show over and over again may very well be little more than an occasion to zone out. However, I’m going to argue that there are conditions in which it’s not only functional but possibly a critical component to a child’s learning, autistic or not.

For what it’s worth, here’s my current thought on this issue. I believe there’s a much more specific point to his supposedly ‘non-functional’ repetitive behavior in watching and rewatching the same show. I think he’s practicing the content of the show in his head until he feels comfortable demonstrating outwardly what he’s learned. He often begins this process by watching a show in a manner that to an observer would seem passive. At some point he moves into this outward expression of concepts slowly, intermittently, and often subtly at first, but usually he’s pretty quick to get to where he consistently does it well. Like I said, it seems like he rehearses inwardly until he’s almost sure he’s ‘got it’.

For the J-Man, he particularly likes watching the same episode of Signing Time – an amazing, special needs-friendly series that teaches children American Sign Language and reading and language skills – and most recently Yo Gabba Gabba over and over. He’d probably watch an episode a half-dozen times in a row – at least – if we let him. However, it’s worth noting that the specific episode he wants to watch eventually changes, and the cycle begins again.

Here’s why I think what he’s doing has an important function to it.

* He is usually engaging with the program, first by watching intently, then interacting with it in some constructive manner (sometimes a lot, sometimes not as much, but he keeps a relatively high level of focus regardless), and involving us in some way, typically by using words, verbal approximations, or a few signs and expecting us to repeat them back to him.

* He displays greater comprehension of what’s in the episode over time. This is a very gradual process, but his assimilation of the material does increase the more he watches it. This strikes me as the very definition of practice.

* Whatever pieces of the episode that may cause him sensory (almost always auditory) distress seem to cause fewer issues over multiple watchings. It’s like he’s actively trying to work through this distress.

* This is similar to what he’s done often in the past. As a baby and young toddler, he just suddenly did things he seemingly couldn’t do before. There were any number of things we never saw him do at first. We’d just turn around and he’d done it. For example, it took us forever to catch him rolling over and sitting up. We’d turn around, and there he was rolled over or sitting up. He didn’t walk unsupported until he was 22 months old, but once he started, he was running around the house within two days. It’s like he has to organize everything in his head first before he does it in ‘real life’.

* Just as suddenly as he started wanting to watch an episode repeatedly, he often stops being interested in it. Typically this only happens after he’s started demonstrating multiple concepts he’s learned from it. Perhaps it’s because he’s gotten all he can from it for now. At this point, he moves on to another. This interest period typically lasts roughly 1-3 weeks.

Given that communication is one of his greatest challenges – and understandably one of the most frustrating for him – we look for more relaxed ways to help him practice communication. I think after a while he gets tired of being asked to interact with real-life people – most of us do! – so something two-dimensional like a TV screen or electronic gadget of some kind may prove a welcome respite for him. It’s hard to tell sometimes, but it seems that way just from what we can glean from his non-verbals and general mood.

I’ve been pondering these theories about this for a while now, but I’ve been skeptical of it for a long time because of my hesitancy to believe that TV is ever that great for kids (other than to give parents a break for a bit!). I still think for the most part that TV – of either the kid or adult flavor – is crap, but that’s another story. There are a few programs I think make a difference, though.

I’ve become much more convinced that the J-Man is learning a lot this way because of how amazingly far Dale Jr. has progressed in his development watching Signing Time and Pinky Dinky Doo with us. We do try to make it a family activity, though I confess sometimes we turn it on just so we can get a few minutes to eat or go to the bathroom.

Anyway, Dale Jr. just turned two recently. Right now he can: verbally identify almost all upper and lowercase letters (in a variety of fonts too), recognize and verbally label 8-10 colors with little or no prompting, identify God knows how many animals and objects (macaw!?), draw from a working vocabulary of probably a couple hundred words, talk in phrases and basic sentences and engage in some basic conversation, do all this in a variety of contexts (generalization!), read some words (he loves the J-Man’s written schedule board), and use more sign language than I can. Now given our family history, I wouldn’t know ‘typical’ development if it jumped up and bit me, so I’ve asked around, and everyone has told us that this is highly unusual at 24 months. Feel free to correct us if we’re wrong.

Rather than some non-functional, mind-numbing experience, I think this practice is really helping both our kids. The J-Man’s speech skills have increased tremendously of late. I’m not at all advocating dumping your kids in front of the TV all day every day. I’m inclined to think there are very few TV programs with which extended viewing would be appropriate regardless. However, I am starting to believe that using this approach with certain programs as part of a broader plan of, for example, developing verbal and reading skills can absolutely work.

We’re specifically convinced that Signing Time has been instrumental in helping our kids with word recognition, communication skills, and reading. The way they both interact with the show is quite amazing, and they, each in their own way, use those skills in other contexts during the day. We reinforce those skills all through the day in as many ways as we can.

I don’t want to turn this into a lovefest for Signing Time even though I think it’s deserved. Both kids also love Pinky Dinky Doo, which I think may be the most autism-friendly program on TV with all its structure. They’ve picked up tons from it, too. Very recently, they’ve both been really into Yo Gabba Gabba. I can see why Dale Jr. loves it because it’s so movement-oriented, music-based, and silly. I was astonished, though, that the J-Man enjoys watching it and even requests it verbally! If you’ve seen it, it’s not necessarily the most sensory-chill show in the world. It’s honestly kinda trippy. We’re still trying to discern what the J-Man is getting out of it, but when he requests something verbally and consistently, there’s something he’s working on. I’m convinced of this.

So what does this all mean? I do think structured kids’ shows that offer some level of engagement and that stimulate areas your child is working on (e.g., speech and communication, movement/imitation) can be worthwhile. I believe they can offer a lower-key way for autistic children to learn without all the extra energy it takes to interact with people socially. Therein also lies the caution. I see these TV shows as a complement only. The J-Man gets sometimes 9 hours or more of learning, therapy, and social time a day on weekdays. That’s a lot of people time, and socializing can be so draining.

If you set up TV watching times as opportunities for learning and skills reinforcement, I certainly believe it can work well for your child. As with everything else, think about it in context with the rest of the activities you and your team of educators, therapists, family, and friends are doing and how it fits in with your overall learning and developmental goals for your child. TV is simply a tool and a resource, and tools used wisely and for the right purpose can make a big difference.

If you’re interested in Signing Time and want to help support our site, you can get Signing Time DVDs through this affiliate link. We love Signing Time and understand that some people don’t care for affiliate links, so you can also just go to signingtime.com.

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The Many Flavors of Autism Awareness

by Tim on April 2, 2011

I don’t know why, but honestly I’m having a hard time getting fired up for World Autism Awareness Day. I suppose it’s that we’re aware of autism every day, and we often aren’t quite sure how to speak in coherent sentences one day a year to the large populace who has little to no frame of reference about our children and our families.

I know this day really isn’t about us so much as it is for the rest of the world who doesn’t walk this path each day. It is a wonderful opportunity to reach people who are more likely to be paying attention. I suppose sometimes our awareness-raising efforts the other 364 days of the year leave me a bit weary.

Last year, I wrote a three-part “Be Aware” series that pretty much listed everything I thought people should be aware of. There’s Be Aware – For Parents, Be Aware – For Family and Friends, and Be Aware – For Everyone. Hopefully you’ll find them worth taking a look at.

We try to give our friends and family glimpses into our lives throughout the year. We usually aren’t dramatic about it, at least we try not to be, but we do try to give a realistic depiction of our lives with all its ups and downs. We celebrate and complain. We advocate and we lament. We cycle through the range of emotions from joy to fear and frustration and celebration frequently, often many times a day.

We look for opportunities for awareness all during the year. We tell our story to others when the chance arises whether it’s to educators, therapists, and doctors, co-workers, various people we run into at some function or another, or just random passers-by. We mostly do that to share that yes it is challenging but also that yes there’s much joy in our journey, we’re fairly normal people, and we get to discover wonders others don’t. I got to wear my Celebrate Autism shirt at the marathon, which got several compliments. I suspect at least some people saw it and gave it some thought, or at least I hope they did. I’ll even bite someone’s head off if they are being mean to a child. Not all awareness raising is gentle after all.

One bit of awareness in my life that I need to improve comes from the fact that often we are so aware of our own lives that we don’t pause to think about other parents like us and the unique challenges they face. Every family has a different story, and there is much insight and comfort we can offer each other. Raising our own awareness of this gives us opportunities to learn, feel understood, and grow in our solidarity with each other. Lord knows we need each other.

But that said, we often lack awareness of how we treat our own selves like dirt. We abuse our bodies by eating junk and letting our physical selves waste away. I became painfully aware last summer that if I didn’t stop doing that, I was in deep trouble. We keep pushing all of the fires and urgent things in our lives ahead of taking at least some basic level of care of ourselves. Often that is necessary, but at some point your body is just going to stop letting you run up that debt against yourself.

Some awareness-raisings are months and years-long projects like state-by-state efforts to mandate that health insurers cover autism. Not only do we have to raise the level of awareness among legislators as to why this is so important, we have to dispel the myths that stand in the way, such as how mandating coverage will jack up premiums, that is unless one really thinks that an increase equivalent to a Snickers bar is somehow jacking up.

Locally, we’ve spent much of this year (one of the projects that occupied me for several weeks) raising awareness in our school system regarding why increasing Pre-K special ed class sizes without adding teachers was awful. If nothing else, we raised awareness that people shouldn’t mess with our kids’ futures, we have really long memories, and we will not give up. That said, I think our work did make a positive impact on our school system, and several people gained some much needed insights.

We’re particularly aware that budget cuts are causing devastating impacts on local and state disability services. We have heard that they do not expect there to be any slots for these services for our J-Man or the hundreds of other people on the wait list at least for the rest of this year and maybe not for the next three. The usual 2-5 year wait list for services may go up even more.

Sometimes we can just practice random acts of awareness. Like today, Dale Jr. and I went to Stride Rite to shop for shoes for him. The extremely nice woman who was so patient and kind to our J-Man when we took him there a while back was working today. Dale Jr. had a blast today trying on shoes, playing, and running amok in the store. The J-Man however had a full blown panic attack the entire time when he was last there. She didn’t blink. She just patiently and calmly got us all through it. You know we’re all aware when someone at a business treats you and your child with kindness and respect. Make those companies aware that you are thankful for them and those individual employees.

Other times we have to grind it out with the systems and bureaucracies of the world. Often we have no idea what difference our actions make. We plant seeds and hope for the best. But I think no well-intended step we take is ever pointless. Collectively everything we do accumulates, building on each other’s efforts until something wonderful happens. Maybe it’s quick; maybe it takes a generation or more. So much of that is out of our hands.

Maybe what we can do today and every day is simply ask, what one thing can I do today? Can I make a difference to another family? Can I teach someone about autism? Can I spread a positive message? Can I just randomly act in kindness toward a complete stranger? Can I kick down a door that’s blocking the way of progress? Can I share a word of thanks to someone who has helped us? Can I be a little kinder to myself? This applies whether you have an autistic child, you’re a family member, you work with children, or you just want to be a kind citizen of the world.

Ultimately, if we act in kindness with an intention to make a positive difference for our children, our families, our communities, and our world, I believe that whatever we can do will matter. We might not know how and we may get precious little evidence that it did, but I think we can trust that good things do somehow come.

Today, maybe if what we just say is, Let me tell you about my wonderful child and how I want to make a difference in the lives of all children, that has all the makings of a beautiful day. And that’s how we build a future.

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Two Be or Not Two Be?

by Tim on March 13, 2011

[This is a post written in two different eras of our lives. It's about the question we wrestled with for so long regarding whether to have a second child, which I thought of as "Two Be or Not Two Be?" The first part contains some thoughts I wrote in 2009 about three weeks before Dale Jr. was born. The second is reflections of where we are now.]

April 17, 2009

One of the most complicated and difficult decisions Mary and I have made together is whether and when to have a second child after our J-Man. We knew from before we got married that we wanted two kids. We understand ourselves well and accepted that our ability to provide the kind of attention we wanted to our children would drop exponentially after two, so that would definitely be our limit. It also felt like a nice, round number to us since, at least in theory, it meant that each of us could give one-on-one attention to our kids at any given time. Theory and practice often diverge someplace, but there is still value to us in the idea.

That sounds dynamite in theory until you add having a child with autism into the mix. It’s oddly common among parents I know that they have two children with their youngest child being autistic. It’s not much of a sample size for sure, and I’m not advancing any sort of theory here. For whatever reason, that just seems to be how it happens with parents around us. We have until now been the exception, and one that more people than just us have noticed.

One even more common trait that parents don’t really like to discuss is that for many of them their last child – no matter how many they have – is autistic. It’s not a dirty secret; it’s just something you quietly nod your head about and accept as an understandable decision. The time you invest in your children’s growth and well-being is immense. But it’s this particular issue that has piqued the curiosities of parents – with or without autistic kids – with regard to our decision to have another child after the J-Man.

Thankfully no one, at least to our faces, has questioned our judgment, though I imagine a few may have amongst themselves. But as with many things, we acknowledge the opinions of others and just move on with our lives. They had nothing to do with our decision.

I don’t recall us ever seriously considering not ever having a second child. There were a number of times we uttered, “I don’t know whether we can do this again” during the five-therapies-a-week periods. I know in deciding the timing of when to have a second child, there were plenty of days, weeks, and months where we quietly acknowledged that it wasn’t time yet.

Then there’s the thought no one is really proud of but every parent of an autistic child considering having another kid thinks about. Might as well be honest about it.

What if we have ‘another one’?

Obviously, parenting an autistic child is not some sort of disqualifier in having more kids. Plenty do. But you do have a huge decision to make with so many variables that it becomes an almost unsolvable equation. Studies are indicating that if you have an autistic child, you have somewhere between a 1-in-10 and 1-in-20 chance of having another. How do you feel about this? Will you be able to keep the level of attention going that your autistic child needs? Are you concerned about your ability to devote enough attention to each of your children? Can you afford care for each of your children? How will our child react to a new baby in the house? The list of questions can go on and on. You can paralyze yourself with them. And there are no clear answers. And I hate to disappoint you, but there never will be.

For us, I think it became a statement of faith in our relationship. Little did we realize how almost prophetic our wedding vows would become.

We shall keep together what share of trouble and sorrow our lives may lay upon us, and we shall hold together our store of goodness and plenty and love. When our way becomes difficult, I promise to stand by you and uplift you, so that through our union we can accomplish more than we could alone. I promise to honor and care for you, to speak the truth to you in love, and to cherish and encourage your own fulfillment through all the changes of our lives. I will stand beside you in joy or in sorrow, in ease and in conflict, putting the commitment we make today above any obstacle that we may face. This is my solemn vow.

We declared that day that we believe we can meet any challenge, and we realize now that our belief in that is stronger still. We have become pretty good parents when faced with a huge challenge. We’ve overcome and even thrived because we’ve discovered the frequent joy in these challenges. Most importantly, we’ve discovered that our J-Man is perfect the way he is and so full of love that it amazes us that his little body can hold it all in. And we believe our love for him can transcend those challenges and help us regardless of what comes next.

We did decide to have an amnio this time around. I was a little hesitant about this because while I know the risk to the baby in an amnio is very low, I’m not one who fully appreciates those kinds of statistical nuances. It was quick and fairly easy and we had the preliminary results in a couple of days – negative for all the quick and obvious stuff. We received the full report a few days after that, negative for everything they can test for. I must say that I liked having the amnio done more than I liked the idea of doing it beforehand.

We know there’s no test for autism, nor are there tests for a host of other health issues that might be part of his life. Life has few guarantees, and waiting on them will just do you in. It is nice to know certain things, however, even though nothing the report could have said would have affected us having the baby. Our rationale was that if something came back positive, we’d have time to prepare. Given how most of our lives are shaped by autism and the J-Man’s many needs, if the arc of our lives was going to have to bend toward another direction, we needed to know.

I am certainly not saying everyone in this situation should decide to have another child. This is simply how we arrived at our decision. We are nervous and excited, but most of all, we are deep-down at peace with our decision and can’t wait until we get to welcome our new little wonder into the world.

March 13, 2011

Dale Jr. is almost two now, and we have long since passed the point where we remember much about life without him. So much of what we worried about then seems like a distant memory now.

We got off to a sometimes rocky start, and our J-Man did regress pretty significantly for most of a semester at school. But we were determined to get us all out the other side, and we did that with the support of so many wonderful people. That’s as much a testament to the J-Man’s courage and determination as anything.

Is life with two challenging? You bet, but whoever said ‘challenging’ is by default a negative we should all avoid may not understand the concept very well. Great challenges often produce even greater joys.

Dale Jr. is pretty easy-going, has a wonderful sense of humor, is kind and loving, and is adored by everyone who meets him – just like they should! Many days feel like we have to relearn parenting, but that’s to be expected. Both our kids grow and change quickly. Every day brings a new discovery.

Life is often far more chaotic than I would prefer, but that’s largely about me and my still developing skills at coping with unpredictability and time management (such as that ever can be managed). But we’ve learned that we can fly pretty well by the seat of our pants and figure out much of what we need as we go. It calls forth the best of who we are and can be, and that is a wonderful thing.

We made the right decision for us at the time in which it was right for us. It’s important to keep both those things in mind as you think about having more children. This is true whether your children have autism, something else, or are considered ‘typically-developing’. I believe we do have a responsibility to our children to make decisions that are right for them. I definitely don’t think it should matter one bit to you what we’re doing or what anyone else decided to do. You have to look at your own relationship to each other as spouses and to your children as parents, your children and where they are in their lives, and the time and circumstances of life you are in right now, and then make the best decision you can based on that.

This is likely not the straight answer you were hoping for, but there’s never going to be an easy answer. If I have any guidance from there it’s to say, acknowledge those feelings of discouragement, uncertainty, overwhelm, and fear and patiently look for those more quiet moments where reflection is possible. I know in our chaotic lives that those can be very rare, but even a few seconds here and there can be enough. In time, you can gather up enough of these bits and pieces of reflections out of which the insight you’re looking for will arise.

Trust that you will make the right decision for your family, and I believe that will put you in a frame of mind where you will.

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Let Me Out of Here!

January 5, 2011

Yesterday we took the J-man over to do the last part of a research study we’ve been participating in. This was the big part – the in-person evaluation. Sometimes the J-man does OK with formal evaluations, but usually they can be kind of a mess. I think part of the reason is the transitions – [...]

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What do parents of autistic kids want?

August 17, 2010

We want to know that somehow, some way we are strong enough. We want to see what we are working toward and have the perspective and wisdom needed to get there. We want quality, clear, and accurate information because we have so little time and energy to think. We want to know that we’re part [...]

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