Advice

Goals for 2012

by Tim on January 22, 2012

The Decrapify Your Life project is underway. (It now has a pseudo-official name!) Clearly the need is there since it’s taken me 22 days into the new year to post this! But I have been working on my goals anyway at least.

Several of us have banded together to make some changes in our lives in 2012. You’re still welcome to join us. Just let me know (tim -at- bothhandsandaflashlight.com). We’re starting to make our way together on Facebook and by e-mail. Yeah, we’re feeling our way around in the dark trying to figure it out, but that’s how a project like this has to start.

In looking at goals for the upcoming year, one principle I’ve become enamored with is having as few goals as possible. Instead of having a bunch, not doing any of them well or at all, and then just getting mad at myself and frustrated with the cosmos, I’m going to try the approach of having as few goals as possible but making sure I do all of them. If you have too many, your attention gets scattered and overwhelmed. Choose a few, then focus like crazy on them. And by ‘few’ I’ve settled on five total for the whole year, and I am wondering whether that’s too many.

Here’s what I’ve tried to do with them. I’m patterning my goals after IEP goals – specific and measurable. But just like as parents we want to set challenging goals for our kids and assume they are capable of great things, I’m also setting the bar high for my goals for the coming year. And I made them congruous with my three words for 2012, so I really have a clear sense of my mission for the year.

However, with big goals you have to be somewhat careful or you can easily get overwhelmed. When I ran a marathon this past spring, I really tried to never think about the gravity of running 26.2 miles until the actual day of the race, and even then I tried not to think about it any more than was necessary while actually running it. I divided up training into specific miles for each run and then did them on their appointed day. Within each run, I divided those miles into steps and smaller goals. (Just run to the next light pole!) And because I focused so much energy and attention on it – by committing more fully to fewer goals – it worked. I spent most of my 37 years dreaming about that finish line. This is how I finally did it.

It is pretty crazy to think about running 26.2 miles at one time, but when people ask me how I did it I seriously say, You just show up regularly to train and take the steps over a period of many months until you get there. The process isn’t magic or mystical. You can’t run anywhere until you run the next step. That’s the key. So, I know I’ll need to break my big goals down into tasks, intermediate goals, and bite-sized chunks.

So if you want to participate at home with us, that’s my first suggestion. Create specific, measurable goals for 2012, and create as few as possible. I’d say no more than five, and the fewer the better. If you complete your few goals early, awesome. You can start on another batch then! Who cares if you’re reading this in January or later in the year. Just go ahead and do it. There’s nothing special about beginning first thing when the year starts.

I’ve mentioned this before on Facebook, but I’ve become an avid reader of Zen Habits. He’s shaping the way I look at simplifying life. I’m the staggering village idiot compared to his mastery of things, but he started out not knowing how to do this either. So I’d give him a read when you have the chance.

This is going to be quite an adventure. We’ll screw up a lot of things, learn even more, and eventually find our way. I really believe that all we need to do is commit to the goal of decrapifying our lives and then taking all the steps – one at a time! – needed to reach the places we want to end up. That combined with the support of other people with similar challenges doing it with us is a recipe for finally making some real changes in our lives.

What this will ultimately look like will vary from person to person. It has to be the right outcome for you and your family. I’m still refining the specifics of mine a bit, but here are my goals.

  • Eliminate our revolving debt. By Dec. 31, 2012, all credit card debt will be 0. I won’t announce our current debt amount publicly because that seems rather risky given unscrupulous people out there, but let’s just say it’s a lot.
  • Get serious about my freelance business, expand my work, increase revenue two-fold over 2011 (the measurable part), and do projects I enjoy.
  • Complete and self-publish an e-book about autism.
  • Donate, recycle, or throw out 800 cubic feet of stuff. (Measuring that should be a hoot.)
  • Run 1,000 miles in 2012 and complete at least one marathon, and if I can find one nearby an ultra-marathon (something greater than 26.2 miles).

How in the hell am I going to do this? One step at a time equals unstoppable forward progress. You can zig, zag, stumble, go backwards a while, and stagger like a drunk along the way and still make forward progress. It doesn’t have to be pretty. No one is handing out style points. This is your life. Make it happen in any and whatever way works for you.

And I’m going to blog it out. I’m going to do this publicly and be held accountable. I’m going to document it so that at the end we’ll understand what worked and what didn’t so we can all do it year after year. We’re going to learn together and make real, lasting, positive changes in our lives.

I invite you to join me in this year-long project. I’m working on setting up a separate part of our blog for this in hopes of keeping things a little better organized. This will be part me blogging out loud how I’m doing, what I’m learning, and generally being accountable to my goals. I’d like other people to join in that process of checking in, sharing insights, and mutual accountability. I was part of a private Facebook writing group in November that did wonders for everyone in staying focused, getting encouragement, and making sure we all reached our goals. So I’ve set that up on Facebook for any of you who want to join me in the Decrapify Your Life project. Just let me know.

I’m really excited about this. There will be plenty of steps forwards and backwards along the way. We’ll screw some things up and enjoy many successes. We’ll feel like we’re failing and then discover we actually do kinda know what we’re doing.

We’re heading into uncharted territory. We’re going to have to pave the road as we go along. But where we end up at is going to be awesome. I believe it.

”Roads? Where we’re going, we don’t need roads.” – Dr. Emmett Brown, Back to the Future

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A Journey of a Thousand Miles

by Tim on November 29, 2011

“A journey of a thousand miles begins with a single step.” – Lao-Tzu

Today I achieved something momentous, and I almost missed it. I completed my 1,000th mile since I decided to start running again and taking control of my health in August 2010. I’ve run well over 800 of those miles in 2011, including a marathon in March. Just to give you some idea, a thousand miles is approximately the distance from New York City to Daytona Beach, Florida, and farther than the distance between New York City and St. Louis, Missouri. To which I thought to myself, Holy crap! I can’t believe I did that!

A thousand is certainly a nice round number, but in light of Lao-Tzu’s quote, it means something more to me. Today I completed a circle, and now I get to start a new one.

With over a year’s worth of perspective, I better comprehend what a deep mess I was in last year. You can read all about The Great Burnout, but the short of it is that I was physically and emotionally exhausted and in trouble. It was a real low point in my life. It was either do something or fall apart. I am obviously glad of the choice I made. Little did I know where it all would lead.

I remember very well that August day last year, a couple of days before our wedding anniversary as a matter of fact. I laced up a clunky pair of running shoes, strapped on my iPod, and headed out the door for Week 1, Day 1 of the Couch-to-5K program. It primarily involved a walking warm up, alternating 60 seconds of running with 90 seconds of walking for 20 minutes, a walking cool down, and beaching myself on the couch after the effort. I felt like I weighed every bit of the almost 235 pounds I was then. I plodded along slowly and completed the workout in one piece. It was a manageable effort, and I felt satisfied. I had started, and that, it turns out, was the first step on an amazing journey.

The workouts got much harder. All I wanted to do was complete the 5K autism run that October with a goal of finishing in under 30 minutes. My knees started killing me. I fell back into a despair. But I knew I couldn’t quit. Much more than a 5K was on the line. I was on the line. I told my body I was taking a few days off, but then it was on, regardless of the pain. I don’t normally recommend running in that much pain, but my situation called for desperate action. I pushed through it, completed my training, and eventually finished that 5K in 28:52, with a knee that looked rather like a large grapefruit. I didn’t care. I felt like I was coming back for good.

One thing led to another. My runs got longer. Then one day while on a long run, in a fit of pique, inspiration, or sheer insanity – or all of the above – I decided to set the biggest goal I’d ever thought about going after. I decided to complete a marathon three months from that day. This past March, eight-and-a-half months after I started running again, I crossed the finish line and completed my first marathon.

It is true what they say. The finish line of your first marathon is a transition line for your entire life. You cross over, and your life is never the same again. And it hasn’t been. It showed me that if you keep taking one step after another, anything is possible.

That’s what the J-Man first taught me. His life and growth are a series of steps – some small, some enormous leaps – each hard-won. No particular one may be all that glamourous or noteworthy all by itself, but when slowly but surely added together, they create magic. This is one of the wows of autism. And for me personally, I’ve discovered this is one of the wows of life itself.

I have tried to apply what our J-Man has taught me to my health and fitness, to my work, and to my life. It’s working. I think I get it now. I may be a slow learner, but I have an excellent teacher.

I feel more confident in adding new and harder running goals, working to get our lives in better order, and growing my work and hopefully my income, too. I feel like I have some idea what the heck I’m doing now. Our J-Man showed me the way to believe again.

There’s no magic plan here for you to follow. There’s no checklist to fill out and work through. It’s not quick or easy. You can’t make an infomercial out of it. You most likely won’t get results any time soon, but you will get them. You just decide what your heart wants most, and you go get it. You go outside your proverbial or literal front door, you take a step, then another, and you don’t quit until you get there. There will be setbacks and detours, you will often doubt whether you can do it, but if you keep your eyes on the goal and never quit, you will get there.

I made that journey of a thousand miles. It taught me enough lessons to fill a book. And now I get to begin another journey. Where it will take me next will be beyond anything I can yet imagine. I know it. So today I take that next, single step.

So go take your step. Don’t wait for anything. Right now. Go.

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Melatonin – The Kinda, Sorta, Wonder-ish Supplement for Sleep

by Tim on November 13, 2011

A while back, we were at a crisis point with our J-Man’s sleep. It would take him 2-3 hours to go to sleep at night, which usually resulted in him going to sleep between 10-11PM. He was completely unable to calm himself down at night. We’d look on the video monitor, and he was essentially doing the equivalent of breakdancing in his bed, bouncing off the sides of the bed and up and down on the mattress. He was hollering, squealing, and screeching a lot, typically the sounds of being overstimulated and too overloaded to relax at all. Eventually he’d pass out from exhaustion and sleep. This was affecting everything from school to life at home.

He never has been a great sleeper, to put it mildly. He didn’t sleep through the night until he was 18 months old, and even then we endured long stretches where he’d get up at least once or twice a night or get up really early. There were countless nights where he wouldn’t go to sleep unless we were in the room holding him. We went through long periods of it taking herculean efforts just to get him dressed and ready for bed, let alone get him to sleep.

It started getting better, and we got to where with some confidence that we could expect him to make it through most of a decent night. Then we hit that patch a while back where he was just completely unable to put himself to sleep until he passed out from exhaustion. He was doing poorly at school and at home, he was unable to regulate himself much at all during the day because he was too tired to cope, and of course we were all on the edge of insanity. It was a really grim time around here.

We knew we had to do something and soon. If you aren’t getting sleep, everything else will go to hell. Sooner or later, you will break. We didn’t know what we should do, but we were ready to consider just about anything at that point.

One of the things you won’t see me do much is talk about or advocate supplements. I personally take a typical assortment of things (e.g., multivitamin, fish oil, probiotics), but I take the supplements market with a lot of skepticism. The rigors of testing and science in general are regularly missing when it comes to these largely unregulated products. We give our J-Man much the same kind of things: multivitamin, probiotics, calcium (since he eats almost nothing dairy or anything else with calcium in it), and a green superfood powder that is about the best we can do right now for vegetables since he refuses to eat them. It’s not the same as real food, but it’s the best way we can improvise at the moment.

All sorts of people gave us advice about pills, supplements, and medications, many of which I found rather dubious. So that’s the perspective we brought with us when looking at our J-Man’s sleep difficulties. Bottom line is that we knew we had to do something or we were all going to go crazy. Sleep is the foundation for everything in daily life, and no one was doing well without it.

I’m not really spoiling the plot to jump ahead and say that we settled on using melatonin, which has worked well for us. Before we entertained trying something like melatonin or something in prescription form like a sedating-type mood stabilizer, we tried everything else we could think of. We aren’t opposed to medications by any means, but since our J-Man is minimally-verbal, it’s really hard to know what effects medications (or much of anything we do) specifically have.

I don’t like experimenting without some means of understanding the effects of what we do. I’m a pretty analytical type. I like knowing how things work and why. I bring this sort of process to bear when we attack problems like sleep.

Here are non-supplement/non-medication things we tried over the years that worked to varying degrees. I do think it’s worth experimenting with these and similar techniques before giving your kids any supplements or medications.

  • Structure your nighttime routine. Do the same thing every night when getting ready for bed as predictability itself is often calming.
  • Institute a standard time for bed. This is true for most kids and adults whether they’re on the spectrum or not.
  • If your child likes water, try a nighttime bath. A nice, warm bath can be very relaxing.
  • Look in your child’s bedroom for sensory violations, and don’t forget the fabrics they wear to bed. If anything seems bothersome to your child, eliminate it and see what happens.
  • Try a white noise machine if any sudden noises wake your child or keep them from going to sleep. Many find white noise machines calming regardless.
  • Look at diet, particularly in the afternoon and evening. Are they eating things that could keep them awake (e.g., spicy food, high in fat), eating a lot before bed, or drinking things that inhibit sleep (sugar or caffeine)? Are they allergic or sensitive to foods or drinks that would then upset their sleep? Are they experiencing silent reflux?

Be prepared for these changes to be a battle at first, but stick with it. One or more of them may pay off. Also don’t forget that if your child gets out of bed if they can’t sleep, make their room safe. Sleep deprivation can be very agitating.

If all this fails or if it stops working, consider these medication type interventions. We started with melatonin, which is an over-the-counter sleep supplement rather than what I’d consider medication. It has proven sufficient for us right now. It may not remain so, and we know that. When or if the time comes for us to adjust what we do, we will attack the problem then.

The first few days didn’t go too well, but that did pass. This isn’t unusual. At first, he’d wake up in the middle of the night, and it was really unpredictable about what would happen after that. He might go back to sleep after a while, or he might have just stayed up for good. We had this sense “Oh, crap” feeling about it when all this happened. We worried that we were trading off him taking forever going to sleep for him going to sleep quickly but waking up at 3AM – essentially the same amount of total sleep shifted backwards three hours. Thankfully after a week or so, things stabilized. He was going to bed pretty quickly and getting up within reason of a normal hour. (6:30-7:00 AM plus or minus)

Some parents we know have reported undesirable side effects that don’t go away, though. One reported that their child had night terrors upon taking it that went away when they stopped. Others have said the problem of time shifting their kids’ sleep (going to bed earlier and getting up earlier) rather than getting more sleep didn’t go away. Some parents found their child got more and more resistant to the effects of melatonin as time went on. Our J-Man seems to have had a more unusual side effect. His bowel movements changed for quite a long time, though now they are getting closer to normal. I can’t say for sure if it’s from the melatonin or why it happened, but it seems likely they’re somehow related. This hasn’t proved a big deal for us, though.

This past week, he has been getting up very early again – about 5AM. We can attribute a lot of this to the time change, which is always the bane of our existence. We have started to wonder whether the current dose of melatonin isn’t working as well, but we’re taking a wait and see approach about that.

Most everyone starts with the 3mg dose. Melatonin is available at most big box and drug stores and is very inexpensive. I know some have bumped up to 5-6mg and/or have ended up supplementing it with a prescription medication. The 3mg remains pretty effective for us. I’ve heard mixed reactions to time release melatonin, some saying it works out that the dose is never strong enough to get or keep them asleep.

Melatonin is definitely one of those “your mileage may vary” products. It is generally considered very low-risk, so as experiments go this should be one you can do with less anxiety. However, for children under age 5, I’d suggest being more cautious and going over this carefully with your pediatrician, which really you should do regardless. I don’t know what the minimum age is – or if anyone knows – but as a rule, the younger the child the more careful you should be.

[Edit: 11/14/11 - The day after I posted this, I saw this article "Genetic studies probe sleep hormone’s role in autism" about a study finding much lower concentrations of melatonin and the enzyme that produces it in their autism group vs. their control group. Very interesting!]

If you try melatonin and it doesn’t work, you may want to consider prescription medication. I know many families who have gone this route to varying degrees of success. Many meds that normally aren’t used for sleep disorders do work for autistic children for reasons no one quite understands. While off-label use of prescription meds is rather common among autistic children, it’s still pretty confusing to parents and medical professionals, too. There indeed are meds primarily for mood disorders that are traditionally used for calming and sleep in neurotypical people that also work for autistic children. You should be very careful with these in my opinion and not use them without caution and close supervision of a qualified medical professional, particularly a child psychiatrist who specializes in autism.

I personally from experience would not recommend using psychiatric type meds under the direction of a pediatrician or general practitioner. I think it’s critical to find a specialist in both autism and pharmacological interventions. These are not meds to screw around with, and it’s rare that pediatricians have the specialized knowledge required to manage medications with autistic children, particularly when many specialists don’t yet understand how or why many medications work with our kids either.

Standard disclaimer that you should always use supplements and medications under the direction of a qualified medical professional. Melatonin is one of the safest and natural options available for helping your child sleep. I wouldn’t say it’s been a ‘wonder drug’ like some make it out to be, but it definitely has given our son a number of improvements to his sleep that have made life easier on everyone. We certainly give it a thumbs up.

[Thanks again to Danette at S-O-S Research for including this post in this month’s Best of the Best series on ”Medications and Their Use with Special Needs Kids” edition. Starting November 15, you can see the entire collection of posts via that link.]

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What Does ‘Strong’ Mean to You?

by Tim on October 14, 2011

I’m going to ask the question in the title of this post again at the end, but I want to first bring up a few things I’ve thought about concerning what ‘strong’ means in our lives as parents of autistic and special needs children.

I’ve had a lot of conversations with people about how difficult some episode or part of parenting has been on them physically, emotionally, spiritually, mentally, or typically some combination of these. Let’s not sugarcoat things. We face a lot of challenges. Some of them wear us down. Some days all we can do is hold our heads in our hands. We are determined to overcome these challenges, but it sure would help if we had greater reservoirs of strength to draw from.

I realized that being ‘strong’ means different things to different people. In our patriarchal culture, it’s often equated with physical strength or political or economic power. Many movies and televised sports only add to the glorification of this. I think if you ask a dozen random people in public, most, or maybe all, of their responses would fall within this definition of ‘strong’.

What’s intriguing to me is that if you ask a collection of parents of special needs children, my experience has been that you’ll get a much broader array of answers. We are very aware of our limitations in areas essential to our families’ needs and at some level our own survival. Our role models are often other parents who we think are living in ways we want to ourselves, leaders in the autism and special needs community, and people who have overcome great obstacles and challenges to succeed and thrive. I’m not saying that others don’t hold people like this in esteem, but we may be a lot more likely to have heroes like Temple Grandin than we would, for example, Peyton Manning.

We do need a certain physical strength to get us through the day particularly when it comes to managing a panicked, growing, amazingly strong child in public, chasing after one running from us in a crowded parking lot, or simply having the physical endurance for everything required of us during the day. At least these are some of the reasons why I’ve been running and working out for over a year now. It gets to the point quickly where this becomes an essential part of our job description.

But we are very aware of the fact that we need a variety of emotional and related community supports from people who know what we’re going through. Those are areas in which we’d certainly like to be stronger. Fear, anxiety, anger, and despair are but a few of all the difficult emotions we wrestle with. They are understandable and natural. But I know we’d all like to manage them better. Having these emotions isn’t the issue; being ruled and even incapacitated by them is where many of us struggle the most. When we lose our grip on this, which is often, we feel weak and undone.

We feel alone in this struggle, though in reality we’re not. In fact, it’s one trait almost all of us share. We can draw strength from knowing we’re not alone. We can draw strength from knowing others understand us. We can draw strength from each other’s wisdom. And we are strong when we band together in the face of injustices that harm our children and say, “Enough!”

Whether it’s another’s insight, empathy, or just their quiet, understanding presence, these gifts make us stronger. And largely these are quiet, unheralded acts of strength. So much of this never happens in public view, but it forms the foundation of so much of our building strength.

In addition, we appreciate the strengths of those professionals who support us. Our teachers, therapists, local and state service supports, advocates, and so many others possess amazing gifts and talents and a willingness to share those with our children. No one is making them do this. They chose their vocations because this is what they love. They use their abilities and wisdom to help our children, and if this isn’t an example of strong, I don’t know what is.

We also have an added perspective of ‘strong’ from our own kids. They have many strengths, whether it be prodigious talents in certain areas or their ability and determination to progress bit by bit and enjoy success despite all the challenges they face. They teach us that strength doesn’t magically appear out of nowhere or come after a few minutes of bombastic music a la Rocky Balboa. It comes instead from piecing together small, daily acts of practice. Over time, amazing things arise from these seemingly small things. Like grains of sand, they build up and can stand against a great ocean.

Perhaps our vision of ‘strong’ is simply having whatever it is we need in order to be the kind of parent and person we want to be, or otherwise having the means to get it. We might not know what this specifically means for us right now, but we know we need something. In that case, our best bet is to begin identifying where we are struggling most and looking for ways to address that. This could be anything from developing skills and strengths within ourselves to seeking out community resources to help us. We don’t have to know exactly everything we need right now. ‘Strong’ sometimes is just knowing we need help then seeking it out and taking some control of the situation step by step.

Why did this pop into my head? I put on the last line of my Road ID bracelet I wear while running the words “You are strong enough!” I was out running yesterday and thought about them. These were the words I swear I heard in my grandmother’s voice while I was out jogging last year and felt like quitting, giving up on running and a lot of other things, because everything felt too hard for me. I was overwhelmed by everything, and I didn’t feel up to trying anymore. When I was out on the road that night, knees throbbing with every step, wanting to stop, I heard those words. They’ve stuck with me ever since as one of my most important mantras.

They are an affirmation that I can face whatever doubts I have now and whatever challenges will come next. I don’t have to be the strongest person in the world. I don’t have to be superhuman. I just have to be me, and that is and will be enough.

I know she wanted me to believe in myself and not quit because that’s what she always tried to teach me. She overcame all manner of incredible adversity. She refused to let obstacles determine the course of her life. I’ve often felt adrift without her these last two years.

In his eulogy to Steve Jobs, Seth Godin said, “It’s one thing to miss someone, to feel a void when they’re gone. It’s another to do something with their legacy, to honor them through your actions.” This is what I’ve been striving to do. I think of her brand of strong as ‘Mamaw strong’. This for me means strength of character, conviction, faithfulness to family, relentless determination, and sometimes just plain old stubbornness.

What am I getting at with all this? Here’s where we come back to the title of this post. What does ‘strong’ mean to you? When you look at your life, challenges, children, families, shortcomings, hopes, and dreams, where do you need to grow and become stronger in order to realize your vision for your family and your life? Be as specific as you can. The more specific you can be, the better you can act on this.

If you want to post your thoughts here in the comments, I know I and others would love to hear your perspective. If you don’t, I encourage you to spend some time reflecting on this. It’s helped me, and I hope it does the same for you.

And always remember what my ever-wise grandmother said, “You are strong enough!”

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Proprioception and Calming Techniques

by Tim on September 14, 2011

I don’t know what percentage of our day is concerned with managing our J-Man’s sensory challenges, but I’m sure it’s a lot. Just about every autistic child I know struggles with one or more of their major senses even under ‘normal’ conditions. Of course, this can make already stressful situations when they occur even more unbearable.

If you’ve been on the autism road for a while as a parent, you know that managing and helping calm these sensory challenges can mean all the difference between successfully accomplishing something and your child coming undone. I don’t think I’m overstating things when I say that these sensory issues are the knife edge so much of their lives is balanced upon, and it doesn’t take much to knock them over that edge.

One of the things that parents new to autism in their families need to make sure they understand is that these sensory issues are very real and may be very painful to your child. It can be difficult to understand why something bothers your child so much as it sometimes doesn’t seem logical to us. Why would a fabric, for example, that most of us wear every day cause a child to be in agonizing pain? Sensory challenges are particularly hard to appreciate and figure out for people who don’t really have them. In time, you will figure out more and more about what bothers your child even if you don’t get the why behind it.

However, there will be many people in your family and circle of friends who will continue to think your child is overreacting and that you are coddling them by catering to their sensory needs. In what I think is a mantra you should hang on your wall, “It doesn’t matter a microscopic damn what they think.”

So when things come undone for your child – whether it’s in a store, a family gathering, a supposedly low-key night at home, or anywhere else – there is frequently a strong sensory component to it. When you call upon your arsenal of calming techniques – which you should always be adding to and refining – these sensory issues will often be the first thing you address.

Like with pain management for any of us, it’s important to stay ahead of the pain by proactively managing it. Once it gets away from you, it can spiral down in a hurry. So your best calming technique is to watch for the early warning signs and head things off before your child loses their ability to cope with a situation. It’s much, much harder to help bring them back than it is to try to manage it from the beginning.

However, that’s easier said that done. Even with our best efforts, things are going to fall apart. Expecting our kids to manage the sensory bombardment they face every day is like expecting them to climb Mt. Everest. So then what?

Every child is different, so there’s no right formula for how to do this. It comes with experience and a healthy dose of analysis. Make notes of situations in which your child really struggles. Think about things in the environment where the problems occurred and look for commonalities. Some may be obvious (e.g., public places that are crowded and noisy) others may be much less so (e.g., stores that contain a lot of the color red).

Start by thinking about what you can do to help calm – even a little – the things that cause your child distress before things spiral into a big problem for them. For example, can you go shopping at a less crowded time of the day, such as mid-morning? If so, can you use that time to practice shopping trips? You could structure the trip to the store, say you’re going to get three things and visually present that to your child, get them, check out, and leave – little trial trips to the store to help your child hopefully grow in comfort.

I’ll tackle a sense that has always been an issue for us, and one that can present challenges for both child and parent in numerous contexts – proprioception. Then I’ll say something about how various techniques have helped us help our J-Man in stressful situations.

But you might need a definition for proprioception first, especially since it’s a sense many of us take for granted. Proprioception is essentially your body awareness sense. It helps you know where you are in space. To give some simple examples, if you’re standing up, it helps you know you’re standing, where your body is, and that your feet are on the ground. If you’re sitting, it helps you know your body is in the seated position and in contact with your chair. Sounds trivial, but if you’ve ever had this sense of falling when you’re in bed at night, you might have some idea of what it feels like when your sense of being horizontal and in contact with your bed goes away. It startles and scares you. Now imagine life being like that for long periods of time, all the time, and not just for a split second right before you go to sleep.

One of the best ways to deal with an underdeveloped proprioceptive sense is to help your child feel more aware of their bodies. This can be wonderfully calming both in everyday situations as well as stressful ones. Our J-Man responds to deep body pressure and ‘heavy work’, lifting or moving heavy objects around. A lot of autistic children I know benefit from techniques in both of these areas. If you think about it, this makes perfect sense. If you’re standing up in a room and then someone hands you 50 pounds of sand to hold, you’re going to be a lot more aware of your body and how much more you’re pushing against the floor. Obviously some children will hate it, and it’ll be the exact opposite of what they need. As with everything, you have to tailor a plan specific to the needs of your child.

Deep pressure involves a wide variety of activities that apply some sort of additional force to the child’s body. Our J-Man responds to firm pressure applied to a large portion of his body. Some examples of things we do or have done in the past:

* Full body hugs and squeezes
* Carrying him upright in your arms like you would hold a baby to your shoulder
* ‘Squishes’ where he essentially lays down on the floor, couch, or chair and we lean our body weight on him
* ‘Burrowing’ which he usually initiates by crawling in behind you while you’re sitting on a couch or chair
* Piling blankets and pillows on him, sometimes while leaning on him and the pile
* Joint compressions (with or without brushing) – See here for a basic explanation.
* His car seat – he likes the coziness of his car seat, which is still a five-point harness in a seat that wraps around him more than a lot of kids’ seats
* Pea Pod – something that looks like a kid-sized inflatable boat that he can sit or burrow in
* Wrapping him in something like a blanket

Obviously this list isn’t comprehensive. You could also try a compression vest or compression clothing. For those of you who’ve watched the Temple Grandin movie, the squeeze machine is based on this whole concept of deep pressure.

And here are some examples of heavy work. These are more pre-emptive calming techniques that we could use to try to head off potential meltdowns, but they can work well when things start getting stressful.

* Letting him pull on something heavy that will be hard (or even impossible) to move – pulling a wagon filled with books, for example
* Letting him carry heavy objects like encyclopedias and phone books
* Letting him rearrange furniture
* Wearing heavy, cloppy shoes – he wears these heavy, all-terrain, Stride Rite shoes, which add weight and give him a lot of feedback through his feet. I know plenty of kids who wear heavy shoes and work boots.
* Weighted vest – Simply a vest with weights built into it to apply some uniform, downward weight to your child that they wear around for a while. We don’t use one now, but we did for a while. Note: You should only use this under the supervision of an occupational therapist.

These are just some ideas that have been great sensory calming aids for us. As always, your mileage may vary. Your friendly, neighborhood occupational therapist should have a wealth of information about sensory challenges and sensory defensiveness, proprioception and all the other senses, and the huge variety of things you can try to help your child in difficult situations.

Luckily for us, our J-Man is resilient. Once removed from a stressful situation (extreme example – the dentist), he recovers quickly, but he has to get out of there first. If he can get to a ‘safe space’ when things are bad for him, he can regroup admirably. Last dentist trip, once we got back into the car and got him in his car seat, he started to relax. Eventually he just shut down (went to sleep, but mostly just shut off) for about 15 minutes before we pulled in our driveway. It’s amazing how much he’s learned about helping himself through tough situations. Our kids can teach us a lot about what they need!

There’s a lot of trial and error involved in finding the right formulas to help your child in various situations, and what might work in one context may not in another. I doubt this is a news flash to many of you, though. There’s never a straight path from Point A to Point B! But start by identifying the senses that your child has the most difficulty managing, look for how those senses are negatively triggered in various situations, and then try everything you can think of to address them. In time, you’ll develop your ‘go to’ list of things to try in familiar and new situations.

If you stay totally centered on your child and learning what’s hard on them and what helps them feel better, you will figure a lot of things out. Remember, it’s not about whether you really understand (though it does help) why something upsets them or helps them, it’s that it does. Bounce ideas off therapists, teachers, and other parents. They can help you see some things you might have missed. In the end, you want to be able to head things off before they get bad, and if you can’t, then have ways to bring things back when they start spiraling down. It’s a challenge, but we’re used to that!

[Thanks to Danette Schott for including this on her September "Best of the Best" posts about calming techniques with special needs kids. Lots of great wisdom from some fantastic bloggers there, so go check it out!]

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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.

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How We Finally Got Through a Trip to the Store

May 13, 2011

One of the ongoing problems we’ve had here that we’ve felt most depressed about has been our J-Man’s fear and loathing of most stores and many public places in general. This began about a year ago when he had a full-blown panic attack at Target, a place we’d been to countless times previously. We tried [...]

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Two Be or Not Two Be?

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 [...]

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