There are now three of us at school who are iPod Touch addicts when it comes to frantically searching for an app that will help free us at least to some extent from the mountain of little picture cards, strips, and communication boards strewn all over our house and car. It’s either that or you never seem to have the ones you need with you in a particular situation. There are numerous great iPod/Phone/Pad apps out there now for picture communication, and my two iPod friends have indeed found a couple they really like. I was certainly impressed with them, too. There’s a lot of creative work going on out there in app developer land.

But here at Chez Flashlight, we have what at first seems like a minor issue, but in the realm of iPod and iPhone communication apps it quickly becomes a much more daunting one. Because the J-Man likes written words and can read many of them, he does remarkably well with pictures as long as they are labeled, and usually the bigger the label the better. We’ve even worked him toward schedule strips with small picture icons and larger written-out words. (See below.) Our more traditional looking picture squares get larger and larger word labels as time goes on. The problem? The iPod and iPhone apps we found so far focus on the picture and much less on the word label.

[Examples of picture strip-based schedules. Follow it like a list. Compare with his aging food choice card below and notice that the pictures above are now just icons with large word labels (or large words with little icon labels). Obviously we now have a zillion disorganized strips that seem to multiply like rabbits in the house.]

[J-Man's food choice card that he's been using forever.]

For the most part, this has been a good ‘problem’ to have. We are all convinced, however, that he has hyperlexia. Hyperlexia is where a child has reading abilities beyond or well beyond age level and often a strong fascination with letters and numbers, but it’s often accompanied by significant difficulties understanding speech. Indications also are that while being able to read at a high level, the child may not actually comprehend much of what he/she is reading. It’s thought that a noticeable percentage of autistic children are hyperlexic, and there’s a theory that children with hyperlexia are usually on the spectrum somewhere. There are cases when, for example, you ask the J-Man to point to a ‘butterfly’ in a book that he points to the word and not the picture. This can make teaching what the word means and how to generalize it more challenging, but we can work with that. The good news is that we believe we can leverage his reading strengths to help him compensate for his verbal communication challenges.

The issue is that so many picture communication tools for his age assume that there’s not much in the way of reading skills there yet, or at least that those skills are secondary to picture recognition. And really, this isn’t unreasonable. The assumption – I think – behind most of the current iPod/iPhone/iPad apps is that the child is picture-visual rather than word-visual (written words are still visual), will become more and more verbal, and between that and pictures will be able to communicate their needs. The problem is, what do you do when the child over time still only minimally talks or doesn’t talk at all, their needs become more and more complex, and you just don’t have enough pictures to capture it all?

Maybe it’s just me and my limited abilities to grasp what to do here, but as the things he wants to communicate become more abstract and nuanced, pictures alone just have a very hard time overcoming a communication barrier with a more verbal world or at least with parents who are struggling to learn a language that best suits him. I know it’s possible to develop a picture-based, visual language, but we have to be able to understand what a visual means to him and he has to be able to get his point across. We have to find someplace to meet in there at least until we build a foundation to work from.

Obviously, this is a complex issue that we can’t do more than scratch the surface of in one post. The main reason I bring this up is that I want to find an app that meets his needs, and I haven’t found it yet. Apps are so expensive, few of them have trial versions, and $35-$200 is a lot to pay just to try something out. There are some very cleverly done apps out there that I’ve tried, and I’ve dabbled with a lot of them, but all of them I’ve looked at focus mostly on pictures and put text as secondary. An app that put pictures and text on more equal footing might get us somewhere. Maybe something like that would address the needs of kids like our J-Man who are either more interested in words for visuals or are just at a level developmentally where they are ready for reading.

The leading contender I’ve found is Proloquo2Go. It’s the only one I’ve seen so far that appears to allow for both picture and text-based communication in such a way that both can be prominent and we can leverage his reading skills. The problem? It’s $190 and has no trial version. That’s a lot of money for something I’m not sure about, but the video tutorials are compelling and its extensibility and customization options put it well above anything I’ve tried so far. In the past, I’ve considered Proloquo2Go more of an app for older kids and adults, but I’m beginning to see the possibilities for our now five-year-old.

Anyone have any suggestions about iPod apps? If you are an app developer and think your app either addresses the above already or you’re working on an app that might, drop me a line.Similar Posts:

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This one boggled my mind. I’ve always said that one of the most important skills a parent of an autistic child can have is that of pattern recognition. There is usually a reason why your child does something, and I’m becoming more and more convinced that if you study the pattern of what’s going on with and around your child and what they do or create within that, you may begin to figure out the why behind what he or she does. I have slowly developed this skill at least to some degree either through experience, knack, or outright necessity. I was really glad for it today.

Not surprisingly, it’s hard to evaluate the math skills of a non or minimally-verbal autistic child. That difficulty may easily span much further along the spectrum, but I can only speak from our own personal experience. It didn’t dawn on me until the J-Man built the following – and I figured out at least part of what he was doing – that he might be more able to express the math skills he does have visually. I think he gave us his first big clue today that this is indeed a real possibility.

The J-Man constructed the following two towers out of Duplos. He actually built two more along these lines, but I didn’t get pictures of them. See if you see what the relationships are. (Answers included at the end.)

[Hint - We actually found two 'answers' to this first one.]

[Hint - I think there's only one for this one.]

OK. Figured them out yet? Scroll down for what I saw at least. If you see something I didn’t, please post in the comments! And while you’re at it, how do we expand on this discovery?

Tower 1: It’s 9 blocks tall to the top of the shorter side and 9 more blocks up from there to the top of the long side. Also, the color pattern of the first 9 blocks repeats with the last 9. That’s some serious patterning.

Tower 2: The shorter side is 14 blocks tall and then it is 7 more blocks up to the top of the longer side. Nice way of showing how to double a number, show 2/3 and 1/3, or just generally show an appreciation for something like the Rule of Thirds for Lego building. The color pattern this time doesn’t repeat obviously (dawned on me just now that he didn’t have the necessary color blocks to do that if he wanted to). However, it’s possible there is a color pattern to this that I didn’t figure out. That’s happened before.Similar Posts:

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The journey of a thousand miles begins with one step. – Lao Tzu

We recently had our annual IEP meeting, which we are thankful beyond words is actually a fun experience for us. We feel like we completely lucked out in getting great teachers, therapists, parents, students, and administrators!

While the J-Man had several very rough patches over the last school year – precipitated by becoming a big brother and realizing this little person in the house was actually staying – he did make great strides in some areas. And we are so happy and proud of him that he’s starting off this new school year with a bang.

We brainstorm his educational goals for the coming year with his teacher during the couple of weeks prior to the IEP. We don’t officially write anything until it’s time for the actual IEP meeting, of course. Brainstorming beforehand speeds up the meeting. We just start out with whatever array of goals we have for the coming year and then look at which ones are appropriate for the IEP. Examples: “We’d like for him to eat some new foods” isn’t really an educational goal let alone a measurable one, but it’s an informal goal we know we’ll work on together at home and in the classroom. “The J-Man will imitate up to 8 motions in familiar songs/fingerplays with minimal prompting 50% of the time” is one of his actual goals for the next school year.

Not surprisingly, those educational goals for the IEP are for areas in which he is ‘behind’. As we’ve said numerous times in the past, we have no idea what a ‘typical’ five-year-old is doing at this age to have some benchmark to work from in creating those goals. So we just list everything in our brainstorming and figure that part out later.

We already knew his reading skills have been above, if not well above, age level for some time. With him being only minimally verbal, it’s hard to know with much precision. As a result, we’ve not had any reading goals in his IEPs. Over the last year, he’s been able with decreasing assistance to write a couple of letters, particularly ‘E’ and ‘F’, and he’s working on some more. (The school uses the Handwriting Without Tears method, which has worked brilliantly for him and the class.) So a goal Mary and I put on one of our lists was to expand his writing skills to additional letters. What we didn’t realize initially is that the J-Man’s writing skills are pretty much at age level right now! Woo hoo! That’s news you love to hear! Of course we’ll be working on those additional letters, but we can cross that off the formal, IEP, educational goals for now.

There was a specific achievement we were particularly proud of him for. He’s graduated from his fine motor skills work with the occupational therapist! He’s able to do the various ‘age-appropriate’ tasks asked of him! He’s even renowned for his wild finger dexterity because he’s been known to hold a bunch of snacks in his hands and manipulate other objects at the same time. To think that we started years ago where he refused to even hold anything and then struggled to learn every new task because of all the fine motor planning and sensory revulsion involved. This really is a momentous achievement for him. We are so proud!

Sure there are a lot of areas in which he still struggles, but that’s OK. We’re getting there, and he’s bravely working to overcome all the obstacles still in front of him. It’s important for each of us to celebrate every achievement our kids make no matter how seemingly small those may be. To our kids they can be like winning the Super Bowl. And we should jump up and down and run around in the confetti with them.

Every great milestone they reach comes from the seemingly unending line of inchstones our kids have strung together, one hard-fought step after another. One more second of eye contact today may be one inch closer to more comfortable social interactions as they get older. Just getting the J-Man to put his lips together as one of a number of things that have to happen to form the ‘p’ sound is one inch closer to better communication. A bite of a different food, sleeping 30 minutes longer, a rare embrace, a beaming smile, a calmer trip to the store, and any of a multitude of other victories bring us one inch closer to our kids being able to express their wonderful selves as completely as they can.

This is an ultra-marathon we’re all running, but if today or tomorrow or whenever we get even one inch farther down the road, someday we’ll get to points like we just had when we look up and realize we just tripped over a landmark. We can look back in the direction we came and see how far we’ve come. And then we can face forward again out into that unknown and say like the explorers of old, Well, we made it this far and we’re still in one piece. Let’s keep going and see what’s next.
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Last week we had a parents’ night at school, and discussed communication. The topic was so popular that they were a little overwhelmed in the childcare area, so I ended up leaving about halfway through and helping out. (I carried around the 2 youngest kids and sang to them. My arms still hurt 3 days later.)

We talked about picture boards, and choice boards, and expecting MORE from our kids in terms of communication… but maybe sometimes LESS in terms of spoken words. One of the things the teachers kept stressing was that parents need to remember to stop themselves from overwhelming the kids… with words. They really pushed using pictures to illustrate what the kid needed to say, instead of constantly repeating ourselves. For example, we should say “would you like some apple?” – and then if there is no response, pick up the picture card, and point to the applesauce – and be quiet. Just point.

This one is a hard one for Tim and me. I have to keep reminding myself to shut up, and give the J-man time to process and respond. And keep reminding myself. And keep reminding myself.

The teachers also suggested making the J-man interact with us more – by only giving him a little of what he wants, or only part of what he needs. For example, I know that every morning, the J-man comes downstairs and has applesauce, nuggets, and tea for breakfast. For the longest time, we just went ahead and had everything ready to save time. Now though, he has to ask for each of those things. We also have started giving him half a container of Veggie Straws, when he normally gets an entire container of them for a snack. If he wants more, he has to ask for them! (While I was typing, he asked for crackers… I gave him 3, when I’ve seen the boy eat an entire sleeve! So I’m waiting to get interrupted again.) They suggested when he asks to color, to give him the paper, but then wait for him to ask for the crayons, or even make him ask for specific colors.

One last thing we talked about recently was trying to move the J-man toward forming some letters correctly with his mouth – instead of B and P, he makes this “glottal stop” sound with his lips open. We are waiting (and waiting and waiting) for him to close his lips while making that sound, and only THEN does he get to watch Pinky Dinky Doo, or “do pillows” where we squash him on the floor with pillows for deep pressure. The past couple of times, I’ve just needed to tap my lips and say “lips” and he closes his. The sound is still the same at this point, but the lip position is at least beginning to change.

It’s so slow sometimes that I want to scream. And then, like the “P” lips closed position thing, it’s quick.

One more thing that has nothing to do with communication, but is just too awesome to not mention: I steamed some carrots for Dale Jr, but then couldn’t get him to eat them in pieces, so I ended up pureeing them. I added them to applesauce, and he ate them just fine. Hmmm… how would the J-man react? I am proud to say that he now eats applesauce with pureed carrots (OR pureed butternut squash) AND a dollop of plain yogurt mixed in. I think he may even like it better than the plain applesauce. That makes… NINE FOODS!Similar Posts:

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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 of a really great story.

We want to figure out what our kids are thinking about in the worst way.

We want to have some better clue about how our kids see and experience the world.

We want to know we aren’t crazy, and we want other parents to tell us that.

We want to know that others are going through this daily chaos, too.

We want friends who can keep faith in the good and the awesome on the days we can’t.

We want sometimes for people to just shut up and listen to us talk things out.

We want to know that we aren’t alone.

We want the world to accept our children as they are.

We want to be accepted.

We want to go and do things like other families do.

We want to be able to go out in public or on vacations and not spend hours or weeks preparing.

We want people to stop judging us and our kids in public.

We want to feel comfortable in our own skin.

We want to be able to let our guard down for a few minutes and just relax.

We want quiet times where calm reigns in the house and content kids are curled up next to us.

We want to be able to savor every good moment with our kids.

We want allies.

We want acts of simple kindness.

We want more services and less paperwork.

We want the end of years-long wait lists.

We want to know that whatever threatens our children will not overwhelm them.

We want our kids to be safe.

We want to know that we are able to protect them.

We want to be sure that our children will be provided and cared for even after we are gone.

We want a way to keep our children from being bullied, taunted, or made fun of.

We want desperation to be rare and fist-pumping awesomeness to be commonplace.

We want there to be enough money.

We want people not to fight ‘autism’ but to fight against prejudice and injustice.

We want people to seek opportunities to help every child succeed, because we know they can.

We want what any parent wants — the chance for our children to fully live out their potential and their dreams.

We want to kick butt and not just get by.

We want people to know that our lives are challenging, not tragic.

We want everyone to know that our children are wonderful, beautiful, and perfect just as they are.

We want everyone to know that we will fight for our children until our last breath and beyond.

We want the world to know that we wouldn’t trade places with anyone.

What do you want?Similar Posts:

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“I’d piss on a spark plug if I thought it’d do any good!” – General Berringer, “War Games”

Well, as they say, “$h!t happens.” And so it did.

Our most recent in the Developmental Achievements We Could Do Without series was the J-Man’s newly-discovered ability to climb out of his crib. We’ve dreaded this to be honest as one of those points of no return that would mean we’d have to nuke the existing sleep routine we spent months and years building and basically start over. Within the last few days, we did discover that he’s figured out how to climb back in his bed, which is certainly a plus except that he actually has to want to.

Through our own flavor of Spy vs. Spy, we got him to at least stay in his crib by employing technology he doesn’t yet understand in some warped assertion of power by us the alpha parents. Believe it or not, that much is still kinda working. He has been staying in bed recently until he falls asleep.

However, here’s where it hits the fan, or lands under the fan as the case may be.

When last we talked about this tale many months ago, the J-Man was stripping down while still in his bed, which led to all sorts of fun and funky stuff to deal with in the mornings. For months we’ve been winning the battle thanks to our at one time desperate but in hindsight rather genius idea of putting some sort of shirt over his sleeper to stop him from getting out. Even the Great Flexi-Houdini J-Man wasn’t able to figure out how to get out of it. But as often happens, at some point a wasn’t can easily turn into an is.

It was a good run, but it appears that all good things must come to an end. And some of those must fail in a big pile of excrement, particularly one that results from an almost-five-year-old getting nekkid before it’s time to.

And this is often how changes announce themselves in life. Sometimes you get a religious epiphany, a double rainbow, perhaps the Voice from God, and maybe you simply hear that still small voice. And then there are the times you get a bunch of turds in the floor. However it happens, it’s pretty clear that when any of this happens, a wind of change is coming.

I really don’t know how to deal with this except to say “it happens” and try to come up with something before we run out of sheets, his pajamas, laundry soap, Clorox wipes, latex gloves, and bleach. It’s not like we’re flush with cash, the patience to work it out, or the time to sit and ponder it forever. We just weren’t quite prepared to deal with this latest assault.

This really wasn’t the week to have another load of stuff dumped on us. Yeah, none of us really have time for this crap, but what do you do? It’s not like he’s trying to be a butt about it. “All behavior is communication” is a fundamental principle for autism, so we just have to get to the bottom of it. We’ve just run out of ideas in our arsenal.

Maybe we’ll come up with another desperate but astute idea to wipe out this problem, but it always feels like we’re behind wherever he is. Perhaps if we could just crack the code of potty training, this much of it would come to an end. What a relief that would be! I know we have a good track record of ascertaining the solutions eventually, but at the moment, that’s not very assuring. Just feeling kind of bummed about it all. Well, this too shall pass, I suppose.Similar Posts:

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One of the inevitable things you do when you have another child after one who’s diagnosed as autistic is frequently compare the development of the two. You try not to – or at least not overdo it – because you want each of them to be their own person. I think we do a decent enough job in our house of letting the J-Man and Dale Jr. be on their own timetable for things and not see one as developing ‘better’ than the other.

One of the areas the J-Man has struggled the most with is communication in pretty much every form. While we’ve gained solid ground in areas like picture communication, verbal communication is ground gained inch by inch. We have no doubt that an endless reservoir of insights, wisdom, and thoughts live within him just looking for a way to be expressed. You can even see it when he says, “I want” and then pauses, gets a very intense look on his face, and clearly tries to work out how to communicate what it is he wants. But he often doesn’t have a word for it yet, and to say that’s emotionally difficult on all of us is a huge understatement.

As we’ve said repeatedly in the past, we probably wouldn’t know ‘typical’ development if it jumped up and bit us. With Dale Jr., we’ve rarely worried about it. If there could be two more polar opposite children in a family, I haven’t met them yet. It’s really a brilliant gift to receive as parents because you know you get two wonderfully unique little people out of the deal. Much of the time we only wonder “do children normally do this at this age?” when Dale Jr. does something new that boggles our minds.

I guess it’s that we’re so used to having to really parse and analyze and guess about every verbal and non-verbal cue that when Dale Jr. just comes up to us and asks for something, it often startles us. I sometimes wonder if we’ve gotten so good at interpreting word approximations that so much of what he’s saying makes sense to us, but regardless, the way he uses language to ask for things and identify objects and people is really quite amazing for a child who just turned 15 months. He even uses the J-Man’s food picture board to ask for toast!

We learned way back when that the order in which the J-Man has developed individual sounds (phonemes) was largely ‘backwards’ from the textbook sequence kids on average go in. Normally ‘b’ and ‘m’ – and similar sounds – come early. It took a while for the J-Man to get ‘m’ and to this day he still doesn’t do ‘b’ or ‘p’ sounds. He does this guttural sound for those instead, which we know is his way of doing a ‘b’ or a ‘p’.

For example, if we’re in the living room and he says, “I want” followed by two of these guttural sounds together we know he means “I want pillows.” (i.e., “I want you to lie down next to me on the pillows because I need to regroup.”) What fascinated a lot of people is that his first consistent sound was ‘k’, which is one of the late ones on the development chart. For a while well into his third year, everything on earth was ‘kuh-kuh’.

Dale Jr. picked up ‘b’, ‘p’, ‘m’ and a host of others very quickly starting several months ago. We did get to wondering whether he is following the ‘normal’ pattern and order of speech and phoneme development that the J-Man has largely done in reverse, with the J-Man moving from very advanced sounds back toward the basics.

Just for giggles, I did a little digging around for benchmark kinds of resources for what sounds theoretically could show up and when. If you want something that reads like a specifications manual for your child, skim through “Neurological and developmental foundations of speech acquisition” by Sharynne McLeod, PhD and Ken Bleile, PhD. The information geek in me was appropriately geeked out by this, though a big part of me was like, “Just let him be a kid, sheesh,” but I wasn’t the intended audience I’m sure.

Found another, much simpler, resource from the National Institute on Deafness and Other Communication Disorders. You’ll see “How do I know if my child is reaching the milestones?” and a set of interactive checklists to choose from below that. Click any of them and a new window/tab will appear that asks you some simple questions to give you an idea of whether your child is struggling in particular areas. If you have any concerns about your child’s speech and communication, this looks like a good place to start.

One last site I found was speech-language-therapy dot com, and it’s one you can really browse through for a long time and find a variety of good stuff to read. Some highlights include a semi-technical “Typical Speech Development”, the “Freebies” resource section, and some free “Phonology & Articulation Resources” that offer some worksheets and exercises that might work for your child depending on where they are on their verbal communication.

Back to our kids, another difference between them is the ‘syllable back-and-forth’ method – still haven’t come up with a good term for it – we’ve used for a long time with the J-Man to get up to our own version of full sentences. The following is a typical sentence exchange. Note that all the sounds come in pairs. The first in the pair is him talking; the second is Mary or me.

“I / I / wuuuuah / want / nuh / nuh / geh / gets.” (Translation: “I want [chicken] nuggets.”) Discovering that this worked was a revelation a couple of years ago. We worked up to a couple handfuls of basic sentences doing it this way, though all pretty much begin with “I want” or “I need”, but hey, that covers a lot of ground. We keep hoping to find any other parents who’ve experienced this with their child.

Dale Jr. has in recent weeks started to take the next step and put different syllables together without having to go back and forth like this. (note that ‘mama’ doesn’t count because it’s the same syllable twice) The most impressive one of recent days is ‘apple’, which he says plain as day (‘aaah-pulll’!) when looking at a bowl of applesauce that he wants. He’s developed a great repertoire of very useful words for things he wants or just wants to identify around the house. In the last couple of days, he’s made clear requests for ‘TV’, which as they say may be the beginning of the end. It is amusing also that he’s picked up a few of the J-Man’s speech cadences.

I want to make sure I make something clear here, and if you take nothing else away from this post at least remember this: Verbal communication or the lack of it is not an indicator of whether someone is more or less intelligent than someone else. Do not assume that because a child or an adult cannot talk or talk much that they are not intelligent. If autism had commandments, this should be one of them.

What’s been really awesome lately are the times where Dale Jr. tries to engage the J-Man in play and they start interacting. They love playing chase together, even if that usually means Dale Jr. coming at him full gas and the J-Man running for his life, though they’re both laughing hysterically the whole time. As much as Dale Jr. is soaking up words from us and the J-Man too, it seems to us that the J-Man is starting to pick up some things from Dale Jr. I don’t get a sense that he sees it as a competition of ability. The J-Man’s sibling competitiveness is much more about not wanting to share Mama and Daddy, but that’s a post for another day.

For the most part, our two kids really do bring out great things in each other. We hope it turns into continued speech improvement for both of them. But most of all, we just hope Mary and I and the boys all realize what a gift they are to each other and to us. And we’ll keep working on the rest.
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Monday was our semi-annual trip to the dentist. I doubt I need to go into much detail as if there’s one universal dread we share as parents – and a mortal fear that most of our children experience a thousand-fold worse – it’s the dentist. No offense to the dentists in the world, but with every system in your body on sensory overload most of the time, having a bunch of people crawl around in your mouth with loud and/or pointy instruments under bright Klieg lights isn’t really a recipe for that peaceful, easy feeling.

The truth is, it sucks, and all we pray for is that no one is injured as a result of going and that our son isn’t permanently damaged emotionally. We get through it because we have to. I know many parents avoid it altogether. Seeing our children experience what looks like – and likely is – frantic terror is something we’d do about as willingly as having a few fingers chopped off. I guess we just decided that some kinds of bodily care have to be done, and we have to accept what comes as part of that as best we can, which usually isn’t very well.

Monday’s visit was about typical. Lots of wrestling and J-Man screaming and all the dread and parental guilt that goes along with it. It helps that we fired the dental practice that treated us like second class citizens over a year ago. We love our current dentists. They’re constantly saying affirming things to the J-Man, they are completely calm about everything, and they get it done fast. Worth every penny.

But Monday we had to start coming to terms with an issue we’ve never been able to make peace with – to use restraints or not.

To this point, we’ve never used mechanical restraints on him for anything, medical or otherwise. It’s all been a variety of holds that aim for close body contact (deep pressure and hopefully reassurance) without doing anything that looks like it belongs in a pro wrestling ring. We’ve strained a dozen or so of our parental body parts along the way, but the thought of him bound up in something while strangers worked on him in his already terrified state was too horrible to consider.

However, it now takes three of us using all of our strength and skill to hold him at the dentist. I’d suffer a thousand injuries for him over and over again to make it easier on him. But he’s getting so strong that I’m almost to the point where I can’t hold him without hurting both of us, particularly him.

This leaves us with a possible outcome that we dread – using the papoose board. (Link to a product page – click the Images tab for more pictures) The idea of wrapping him in one of these restraints makes my blood feel cold. Even more mortifying for me are ones I’ve seen at hospitals that have the arms extended outward such that the child looks like a swaddled crucifix. Even though they don’t use those at the dentist, the image stays with me.

I can come up with one possible justification for a papoose board for some autistic children that makes some rational sense. For kids like the J-Man who crave deep pressure in their bodies and are calmed by it, there is a certain logic to using it. It wraps them tight, gives them full body pressure, and simulates to some degree the kinds of deep pressure work he seeks out whether as part of occupational therapy, sensory copying techniques, or whatever. I have read the experiences of a couple of other parents whose children were indeed calmed by the papoose board for this very reason. If the J-Man wasn’t a child who responded to deep pressure many times a day in daily life, I can’t imagine trying a papoose board.

The main question is whether we’re more likely to hurt him with three, four, or more of us trying to hold him vs. using a papoose board. Up until now, I’ve felt like the answer to this question has been simple – just hold him and do the best we can. He’s getting stronger and stronger by the day it seems, though. There will come a point where we can’t hold him. I’m trying to make peace with the idea of trying it once, and if it looks like he’s worse with it than without it, we’ll fall back and think of something else.

I know he’s scared out of his mind. Our hearts break into pieces for him. I’d give anything if there were some way we could talk him through it and reassure him. Feeling powerless is a common emotion for all of us, and this is one of those instances where that feeling is unavoidable.

That day six months from now is going to be full of dread. In the meantime, we’d love to hear your perspective.Similar Posts:

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(Hello people! We are sort-of alive!)

The night before we went on vacation, the J-man hit a milestone: he learned to climb out of his crib. He learned it so well that he did it until 3 AM, when he finally collapsed into sleep… and then so did we, because he hasn’t yet learned to climb back in. (I was up 3 1/2 hours later to get ready to leave, and let me tell you, driving a 7-hour drive that turned into a 9 1/2-hour drive with a crying baby on 3 1/2 hours sleep is bad.) The way we found out he knew how to climb out of his crib? Tim turned on the video monitor to take a last look at the J-man for the night, and said, “Where’s our son?” We searched FRANTICALLY, and ended up finding him curled up in his closet, door closed, stuff piled on him. ACK!

So now we have this problem – he likes his crib, and he likes sleeping in it. But he also likes climbing out, and then can’t get back in.

Scene: Bedtime for J-man

Having just closed the door to the J-man’s room after setting him in his crib, Mary runs into our bedroom where the video monitor (very old, WIRED, monitor is the size of an old Mac Classic and sits on Mary’s dresser) is already turned on. As soon as Mary sees the J-man hike his leg to the top of the crib side, she RUNS back to his room and opens the door…and the J-man plops back down. *cue innocent whistling sound effect* Mary says “Good Night” and closes the door.

The J-man makes lots of noise, rustling around in his crib, standing up, and propping the same leg over the side of the crib. Mary RUNS back to his room and opens the door… and the J-man plops back down. Mary says “Good Night” and closes the door.

The J-man looks all around, trying to figure out how Mama knows he is trying to get out of the crib. He stealthily stands up, quietly eases his leg up over the side of the crib… and BAM – Mary opens the door! The J-man plops back down innocently, and looks over as if to say, “Who, me?” Mary says “Good Night” and closes the door.

Repeat one of those 3 vignettes.
Repeat.
Repeat!
REPEAT…
REPEAT!!!eleventy-one!!

End Scene: J-man is sleeping

Of course, the whole time I’m trying not to laugh out loud (we do snicker quietly), because the J-man really is confused as to how we know when he’s climbing out.

We’ve gotten better at it. Tonight I only had to run in 3 times total. (Of course, now that I’ve written this, tomorrow night I’ll be there for 2 hours running back and forth.)

We still haven’t decided whether to just change the crib over into a toddler bed (but the J-man tends to fall out – not that falling out wakes him!), try a crib tent (he’s almost 5; I think he could tear one of those to pieces the first night), or just make the jump to a big bed (again with the falling out issue). (Also, could I write more parenthetically?)

In the meantime, I’m getting my exercise just running up and down the hall.Similar Posts:

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During The Great Burnout, I dropped off my normal reading of autism-related RSS feeds, Twitter, and pretty much everything else. Clearly I’ve missed out on a great deal of what’s been going on personally with our online friends, and that’s saddened me. I look forward to reconnecting with the world.

But so many of the other more news-related feeds and sites about autism issues, debates, and such remind me more than ever of daytime soap operas. You can skip weeks and months of episodes, come back, and in five minutes pick right back up where you left off. It’s like the plot never goes anywhere; we just circle back and around again.

But I’m not talking about things we fight for together like mandates for autism coverage in health insurance plans, full funding for special education and IDEA, disability rights, and so much else. In these efforts, we join together and continue to make steps – incremental or giant leaps – forward.

It’s in those other areas where we fight amongst ourselves that I am completely tired of it all. We fight about therapies, causes of autism, diversity, ‘cures’, and on and on, and I begin to wonder whether we’re doing so not to seek truth or discover what’s best for our children but to just prove which of us are right. Regardless, in the process, we are practically killing each other.

And the giant, pink, flashing, neon elephant in the room is this, and I think until we really get this, we’re going to keep falling further into this hole.

You’re afraid. I’m afraid. That parent over there is afraid. The parents in your child’s class are afraid. The parent who believes vaccines cause autism is afraid. The parent who can quote chapter and verse that they don’t is afraid. The parent who goes to a DAN doctor is afraid. The parent who thinks biomed is a waste of time is afraid. The parent seeking a cure is afraid. The parent who thinks a cure would take away their child’s identity and rob society of something essential is afraid. We are all afraid. And the fear has gotten to the point where it’s tearing us all down.

Why are we afraid? Every minute of every day we devote ourselves to our children. We are trying to help them walk up a mountain so high that we can’t even begin to see the top of it. And we are afraid that, even in spite of all of our best efforts, we might fail them. We are afraid that our absolute best might not be good enough. We are afraid that things might never get easier for them. We are afraid people will reject them. We are afraid that they will not find love nor someone special to love them in return. We are afraid they will not be able to graduate or find employment or live independently. We are afraid they will suffer or live forever in a constantly hostile world. We are afraid that our bodies and souls will give out and explode because we are so tired, stressed, and desperate. We are afraid we will die and no one will take care of our children. We are afraid of all these things and ten thousand more.

The stakes for each of us are incalculably high. We are talking about our children, our beloved. To fail them is the worst thing we can imagine, but because we can imagine it, we are understandably scared out of our minds.

Every time we want to bite each other’s heads off on some issue, before any other words come out of our mouths, we should be required to say, “I’m afraid, and you’re afraid. Where do we go from there?”

I hold several opinions very strongly. I think some perspectives are plain wrong. That is as much my right as it is for you to think I’m completely full of it. Admitting we’re all afraid doesn’t release us from the rigors of science, ethics, humanity, compassion, and respect that should inform everything we do. But you know how awesome and powerful we can be together when we’re all working on the same side, and you know what a nightmare it can be when we come at each other with the claws out.

If there’s one thing we all have in common it’s the things we’re afraid of. When we turn our fears into passionate energy to advocate for our children, we are unstoppable. When those fears cause us to strike out in anger, we tear each other down. When they consume us, we cannot make good decisions for our children, deal with all the people and institutions we have to work with every day, or make sense of all the information that bombards us.

There’s nothing at all wrong with being afraid; it’s when fear severely compromises our ability to parent and advocate that we’ve got real problems. And there’s nothing at all wrong with spirited debate; it’s when we tear each other down day after day that we lose.

Even if the person you’re talking to won’t, let’s all try to practice some measure of compassion. And let’s practice it toward ourselves too. Lord knows I need to because I’m as guilty of all this as anybody, and my anger was eating me up from the inside. If The Great Burnout and the time away taught me anything, it’s that I need a new perspective. I’m still very tired – and I know you are too – and I don’t feel like spending my limited energy on anything that’s not working for my children and the positive change they need in the world in order to succeed.

So before you or I jump in the trenches again, remember Plato’s words:

“Be kind, for everyone you meet is fighting a hard battle.” – Plato

Similar Posts:

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Athletes call the moment when they completely run out of fuel and their bodies shut down ‘bonking’ or ‘hitting the wall’. But it doesn’t just happen to athletes; it happens to us, too.

For the past few weeks, I think even those terms don’t do justice to how I’ve felt. It’s been like driving into the wall, having the wall fall on top of me, and then just staying buried there. Though for such a simple-sounding word, I think ‘burnout’ covers it pretty well. And I’m ready to be done with it.

After your body uses up its normal exercise fuel, it starts consuming less efficient sources of energy inside you. Your body goes through whatever else it can find to keep going, even up to consuming itself. Even with all that, though, you can typically cease your efforts for a bit, eat something, regroup, and start again.

Burnout in daily life is not only a complete lack of energy but a lack of any fuel to restart again or any good way to get it. Slowing down, taking a breather, eating a little, and trying again tomorrow isn’t a recovery plan for burnout; it’s a joke. When a body is malnourished and all the carbohydrates and fats and whatever else are used up, your body starts consuming tissues and other cells. It will literally eat itself alive until there’s nothing left in an effort to survive. I think burnout is the psychological, emotional, and spiritual equivalent of such malnourishment.

Burnout turns you into a complete, selfish ass because your total lack of everything causes you to turn within yourself in search of something – anything – else to burn. It’s a vicious cycle, a black hole – the worse it gets, the worse it gets still. You eat yourself alive until you start feeling like just a shell.

This is how I was getting. I won’t speak for Mary, but I imagine little of what I’m saying would differ from how she’d describe her life lately. This has been a rough year for us – a lot of death and dying, health issues all around, the constant demands of parenting that rarely let up for a minute, all sorts of work pressures, and the constant refrain of autism that weaves through so much of our lives.

Just as bad is that I was losing patience and compassion with everyone and myself. The only struggle I could see and feel was mine. I couldn’t step outside myself even a fraction to empathize with what the kids or Mary or anyone else in our lives were going through. I was losing all appreciation of the wonders and joys in my own house, the goodness of people, all the living saints we spend time with and read about and interact with online every day. I had withdrawn into myself. I don’t say this to beat myself up. I say it as a realization that I was in a place I couldn’t remain so maybe some of you will see it in your own lives.

While we weren’t completely sure Dale Jr. was ready to be away from us for a few days, we knew that we were at a desperation point of complete exhaustion. We decided to take my older sister up on her offer to watch the J-Man and Dale Jr. for a few days while Mary and I went away. People suggested all these places we could go and all the ‘fun’ activities we could do. But all of our days are already doing one thing after another. All we wanted was to become unconscious for a few days.

We found an isolated cabin in the woods away from people and the Internet and just about everything else. It did have a hot tub, though, which was an absolute requirement. Groceries and whatnot were nearby when we needed them. It had enough amenities for us to be comfortable. We were only an hour away from my sister’s family if something did come up.

And there we stayed for a week. I slept 16 hours before the first day was done. I can go a good part of a week without getting to sleep that much. After a couple of days of sleeping, reading, eating, hot tubbing, sleeping, movie watching, and sleeping, I began to feel the frayed ends of my nerves knitting themselves back together again a thread at a time.

I finally got into a state where I could start to look outside myself again. I thought about all the goodness I’ve received or witnessed these past few weeks, even though at the time I was too drawn into myself to really appreciate it. I reflected too on the hardships of others, most unfair, some tragic. I had been off absorbed with my own wounds to see and understand before.

There are all of the J-Man’s teachers and therapists at school who work so hard for him and generously share so much of their expertise, wisdom, understanding, and kindness with us. They worked to get him into a two-week camp for autistic kids at a local YMCA so he could have structured activity in a supportive environment with other kids, and we could have a couple of weeks during summer break where we could get some stuff done during the day. The camp staff were so wonderful. They did such a great job with our J-Man, guiding him through a completely new experience (his first time at camp) with a much different schedule than he’s used to. By the start of the second week, he really started to get the hang of things and enjoy himself. And the camp staff loved him so much.

Obviously, family have also pitched in their kindness to help us out lately. Mary’s parents kept the J-Man for a few days, and my sister had them for our week away. These breaks are lifesavers for us. We need time to recharge, and there just are not many people with whom we could leave either of our kids, let alone both of them.

There were also painful, and even tragic, things that happened recently to friends of ours. One of the J-Man’s classmates from last year, his family lost their home and everything they own to fire. They are good people trying to do the right thing; they struggle financially already. People like them should be exempt from things like this. I cannot even begin to imagine how awful this was and still is for them.

For me, what came as grace was the response that poured out to help them get back on their feet again. The word went out about their immediate needs, and within a couple of days those more tangible needs were met by numerous people who answered that call for help. The word went out again for basic furniture and household items they’d need to move into another trailer. Within a couple more days, all the needs on that list were fulfilled. To witness all the kindness and care that poured out to this family injected a dose of new life into me. It reminded me of the fundamental goodness and generosity of others.

And this is one of the fundamental truths we hopefully learn as parents of autistic children: There are more of these good, kind, generous, skilled, loving people out there looking out for us, helping us, willing to give their time and talent to us than we can count. Sure there are always some people trying to get in our way, take stuff from us, and make our lives miserable, but I’ve found they are by far the minority. Pulling back for some perspective has reminded me of this.

As our vacation neared the end, I could feel my pulse quicken and my breath get shallower and more rapid. I knew it was fear, fear of going back to where I could be hyperstressed and exhausted and burned out again. But at least I know getting a few days away will be an option for us again down the road. I know that trying to focus more intentionally on all the great people around us opens me up to being refilled by their kindness and understanding.

And I know all that is good and perfect in my life far outweighs the challenges, frustrations, and fear. Perhaps I wrote all this to get to that one sentence, but maybe it’s the one I need to walk away from this vacation with and carry around with me from now on.Similar Posts:

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Updated 6/23/10 – Graduation video! Grab some tissues and prepare to be inspired. Thanks to the proud mom for posting it! Congrats Jeremy!

Alternate link to YouTube video

Many of you have probably read one or more of Chantal Sicile-Kira’s books on autism, particularly Autism Spectrum Disorders: The Complete Guide. Through her books and interviews she’s done, you get glimpses into the life of her son Jeremy, who is now 21, and the many challenges they’ve faced and overcome together. If there were ever an example that being autistic and unable to verbally communicate doesn’t mean you can’t do incredibly awesome things, Jeremy is it.

On June 18, Jeremy will deliver a commencement speech at his high school graduation using his assistive communication device. He graduates with a 3.70 GPA and will attend college this fall. His seven years at Torrey Pines High School striving to achieve this inspiring goal is a testament to perseverance and determination. He dreamed a great dream and together with the support of family, school, and many others, he made it happen.

Of course the first thing that came to mind was the dream I had some time ago about the J-Man. Not surprisingly, reading about Jeremy’s achievement made me burst into tears and smile all over at the same time.

So thanks for being awesome, Jeremy Sicile-Kira. You inspire us and make us believe.Similar Posts:

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We’re getting a double-dose of the graduation awesome this week! I write this on the eve of Jeremy Sicile-Kira’s graduation from high school and the inspiring speech he will give. Hopefully we’ll get a chance to see it online somewhere soon.

Earlier this week, ABC News featured Eric Duquette, salutatorian at Smithfield High School in Rhode Island. Grab some Kleenex, cry some inspired and happy tears, and read on when you’re done.

You can read more about him and his family’s amazing story on the ABC News site.

And, of course, I’m still reminded of my dream about the J-Man, and I still get that good kind of tears.

So thanks for being awesome, Eric and Jeremy. You both inspire us, you’ve put down a trail for us to follow, and you’ve shown us how determination, love, and hope are stronger than every challenge before us. We’re proud of you, your families, and the supporting casts of hundreds and thousands who’ve walked with you along the way. Similar Posts:

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“The doorstep to the temple of wisdom is a knowledge of our own ignorance.” – Benjamin Franklin

We have been people of extremes around here lately. I’ve been burning the candle on three ends with work projects and am at that stupid kind of tired right now. Mary has been going full on at work too. Dale Jr. just keeps doing his thing and impressing us with the seemingly endless strings of new things he discovers every day, and mixing in some obstinate behavior while he’s at it. And the J-Man, well he’s been all over the map of late.

His major leap forward lately has been the amazing improvements he’s made in his receptive language (his ability to process and understand what you say to him, and hopefully respond or act accordingly), which has been such an endless challenge for him his entire life.

I still remember what for me was the most heart-wrenching example of his struggle with receptive language. I was sitting with him at his old preschool back when he was two, and the kids, parents, and teachers were all singing “If You’re Happy and You Know It” in a circle. For the most part, the other kids were doing clap your hands, stomp your feet, and shout Hooray! more or less on cue.

I watched him focusing intently on what the others – particularly the teachers – were doing with their hands and feet. I could see in his eyes that he knew the song and the movements were somehow related. And then I saw a horror creep into his eyes as he turned toward me and grabbed fistfuls of my shirt in panic.

I believe it was for him a realization that he simply could not figure out what he was supposed to do and how to get his body to do it, and that he may have seen himself as the only one there who couldn’t. I cried the whole way home. I will never forget that look in his eyes and how completely powerless I felt to help him. And though it strengthened my resolve to work even harder for him, my heart hurt for him and all the confusing and powerful emotions that I knew were going on inside him.

Within the last week or two, we’ve noticed an enormous leap forward in his ability to understand requests and carry them out. He can’t yet verbally demonstrate his understanding much, of course, and we don’t put him in a bind by pushing him hard to respond verbally to questions without visual aids of some sort. Mostly we look at this in how well he completes things you ask of him, both familiar and not-so-familiar tasks.

We’ve worked at verbal-only (minimal or no visual cues) requests around the house – obviously a familiar context – to help push him a bit in this area. For example: “Go to the table and sit in your chair”, “Let’s go upstairs and change your clothes”, “Walk to the bathroom and let’s get ready for bed”, “Take off your pajamas and get in the shower, please”, “Go to your food card and tell me what you want to eat” – you get the idea.

In the past, we’ve had to repeat our requests many (or many, many, many) times before he responded in any way, assuming he acted at all. Sometimes he’d start off like he was going to do it, but then would stop and get distracted or go do something else or go back to where he started or just stop entirely. Eventually he might work out how to do what you requested. Over time and with repetition, he’s been able to do things more readily, but many things don’t come easy to him. All of this is understandable, of course, when you think about the bazillion competing thoughts, signals, and inputs he has to process at any given moment.

I have wondered whether he’s stored all of our myriad requests in a mental database, and when we ask him to do whatever it is, perhaps his brain runs through that database until something like the query “Daddy is asking me to go to the couch to do socks and shoes” matches up with “I walk over to my spot on the couch and I sit down. Then I hold up my right foot and Daddy puts on my right sock first, then I hold up my left foot and he puts that sock on. Then I hold up my right foot again and he puts my shoe on over my sock, then I hold up my left foot and he puts that shoe on, and we’re done.” And that’s how we do it, every time. And the order of socks and shoes can theoretically be different, as long as I’m not the one doing it and we’re not at home. Perhaps it’s that as long as the process keeps matching what’s in his database, that allows it to slip by all the sensory noise and rushing thoughts intact. The moment it doesn’t, the database doesn’t have any more matching answers and the chaos takes over.

I’ve wondered whether the receptive language issue involves to some (or to a large) extent the ease at which he can access and recall things from his database. I do some database programming for a living, so this concept fascinates me. Is it now that he’s really starting to figure out how to use it effectively? Is he starting to notice relationships between similar ‘entries’? (e.g. Getting dressed for bed seems pretty much the same in this room as in that room, though if I get dressed in Mama and Daddy’s room then they let me lay down on their bed for a few minutes before I go to my bed, and I like that.) I think he is.

And this leads to a much more challenging problem. He’s been having some wild behavioral swings lately. Places we’ve been going for his entire life – like Target – are suddenly occasions for the worst meltdowns we’ve ever seen from him. Things he’s loved doing, like being in the jogging stroller, are like torture. For no discernible reason, he just falls apart in the middle of things we’ve done for forever, or even things we just did yesterday or an hour ago. We’ve been completely baffled by this.

It’s been physically and emotionally exhausting trying to figure this out. He becomes inconsolable and more and more uncontrollable physically. At home, we can just give him a soft, non-dangerous space and work through it with him as best we can. The dread of even looking down the road of self-injurious behaviors scares us beyond words. Even writing that last sentence made me start shaking. In someplace like Target, it’s been a miracle lately if any of us get out without multiple injuries. We can’t keep this up.

And here’s where all this is leading. I talked for a bit with his teacher the other day and she had a brilliant thought (very common for her!). If he’s really beginning to understand the world quite a bit better and knowing how to do some things with a lot less prompting or respond to requests with a lot less help now, then what if there’s much more to this? What if he’s realizing now just how much he still does not understand? What if before he just looked to us for prompts in every situation and didn’t think about the world much, and now that he’s taken on responsibility for some of the things he needs to do in his daily life, he really is getting a sense of how big and complicated and full of new things the world is that he has no context for at all?

Wouldn’t this scare the crap out of you?

What if someone dropped you into a class in advanced particle physics (assuming you aren’t already an expert in it) and said your assignment was to create a unified theory for everything that exists? Oh, and the class is taught entirely in the Navajo language, and you aren’t allowed pens or paper, and if you don’t finish in the next two hours, you’ll die, and the entire universe will too. It’ll probably take you less than a few seconds to become acutely aware of the vastness of what you don’t know, that it’s impossible for you to know it, and that your situation is completely hopeless. Your life and the universe are unraveling, and there’s not much you can do about it. I’d bet you’d panic too.

And after thinking for a couple of days about what his teacher said, I realize we’re back in that preschool room again singing “If You’re Happy and You Know It”. I see him looking out into the everyday places of life, and I can see in his eyes that he knows our words and these places and our actions and certain expectations are somehow related. And then I see a horror creeping into his eyes again as he turns toward me and grabs fistfuls of my shirt in panic.

I see his realization that he simply cannot figure out what he’s supposed to do and how to get his body to do it and his senses to process and make sense of any of it. Perhaps he thinks he’s the only one there who can’t. And again my heart hurts for him. And again our resolve to help him strengthens.

I know that awareness of how much we do not understand is how we grow. It really may be the doorstep to wisdom, but that doesn’t make it hurt any less, and quoting Ben Franklin to him won’t soothe his recent mortal fear of stores or his horror that the world too often makes absolutely no sense at all. The comfort I draw from this right now is a belief that we will go through this to get somewhere better, to a place where we are wiser and more at ease in the world and more able to fully express the best of who we are.

And our resolve will strengthen once more, and we will limp and drag ourselves there any way we can.Similar Posts:

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According to his teachers, the J-man is going through the Terrible Twos/Threes developmental stage. Since he is pretty close to five, it’s a little hard to deal with. He pushes our buttons in many ways, every day. From just being incredibly loud when Dale Jr is trying to sleep to outright physical defiance, he has been a true stinker. They say at school that he is being physically oppositional to things he’s done for almost 2 years now.

And they say it’s normal.

I’d be telling a lie if I didn’t say this was hard. I’m kind of amazed at how hard it is. Our chiropractor has been getting a lot of our business, just because we keep “playing hurt.” Of course we do – that’s parenting, but the physical aspect of forcing the J-man into and out of clothes alone is draining, and that’s been one of the smaller problems.

However, at the same time we are seeing startling upswings in language development. It’s not like he has all of a sudden started TALKING, but he is certainly much more willing to do things like speak some of the words of songs he has heard for years, or tell us that there is a “cookie” on the screen when Rachel is talking about “dessert.” His receptive language skill has definitely increased… now, whether he will actually follow a direction is more of a behavioral issue, but he KNOWS what we’re asking.

I wonder how much Dale Jr’s progress is helping the J-man. You should see how irritated the J-man gets when we’re reciting the alphabet with Dale Jr. (Yes, our one-year-old knows the alphabet. Thank you Saint Rachel!) Dale Jr hasn’t mastered the K sound yet, so when he gets to K and Q, he just skips them. It’s hilarious to us, but NOT to the J-man. It’s causing him to interact, if just to remind Dale Jr that there ARE those 2 letters in the alphabet. (We don’t actually skip them when WE’RE saying them, Dale Jr just pauses and waits for us to catch up to him.)

We’re kind of at the point where it’s time to hire someone to help us structure the house to help the J-man. At our “emergency” parent-teacher conference last week, Ms. Jennifer gave us the name of an organization that does that kind of thing, and we’re going to call them. We are hopeful that if we can get our house a little better organized toward meeting the J-man’s needs that we won’t have as hard of a time as we’ve been having with behavioral issues – that we can clear the sensory stuff as an issue, and then be able to focus on changing behavior that’s just behavior.

I’m pretty sure we’re at that point though, where the only thing that stays the same is that everything is changing. And that’s not so bad because it means we are moving forward, looking for the light at the end of tunnel, and believing with all our hearts that it’s not the train coming the other way to mow us down.

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After the complete suck that the last several weeks have been, we needed to think about something more positive. Regular vacations are often a complete ordeal. It’s the same trials and tribulations as at home only we can’t find anything, and nothing is familiar because we’re not at home.

I’m so exhausted right now that I feel like I’m going to freak out. I need to recharge in a serious way. Who knows when we’ll ever get to take any sort of vacation. But in pondering even the possibility of it, we talked about what our most perfect vacation would be right now given the state of life right now. It actually made us feel better.

So here’s our list of requirements for an ideal, admittedly non-reality-based vacation. Since we can pretty much only take vacations in our dreams anyway, why not do it right!

OK so we’d have to leave the kids with someone. But time would slow in the real world so they wouldn’t have as many opportunities to destroy property, become irreparably melted down, or for us to be disowned by whichever family members were watching them.

Transporter technology would exist so we wouldn’t have to fly or drive anywhere.

We’d go to some remote place that would rename itself Timistan on odd days and Marystan on even ones. They’d have spontaneous parades in our honor, though we may not go to any given day’s parade because that might require us to wake up. But knowing they are parading would be enough. And they would need to wear colorful, amusing, yet tasteful, outfits, preferably with plumed hats and those really big guys who drive the little tiny cars.

Chocolate would appear whenever we thought about it. Talking, let alone going to get it or calling someone for it, takes to much energy.

We’d get unlimited massages. Actually they’d just follow us around so whenever one of us fell over they could start massaging us some more.

Mary and I would have full course meals any time during the day, and we could show up in pajamas. And we wouldn’t gain any weight. We’d be able to stare at each other uninterrupted for however long we wanted to. We’d be serenaded by the L.A. Symphony.

A couple of nights, they’d hold Iron Chef contests for our amusement, and we’d get to pick the theme ingredient – like an assortment of stuff from Cinnabon.

We’d have a dunk tank for people who charge too much for autism products.

We’d go from place to place carried on a chariot by Dick Cheney clones.

Whenever I walked into a room, theme music would play. A patriotically themed video montage of me would play a la Hulk Hogan. If I posed and flexed my muscles, I would actually have some to flex.

Come to think of it, I want to be preceded into any room by a marching band. Once I arrived they could prepare for the next room. This might mean I’d need a big bathroom.

I’d be able to press a button that would illumine a sign that would summon random people to walk up to me and say something affirming and tell me that I am awesome. They would walk around me in circular orbits waiting for my signal.

There would be a giant beer fountain that I could swim in.

Days would be lengthened to 51 hours so we could sleep at least 30 of them and still have plenty of time for food, adult beverages, massages, and/or naps.

There’d be a giant movie theater just for our use. It would show any movie we wanted, including ones that haven’t been released or even thought of yet, and we’d have his and her remotes. And we could each watch different movies simultaneously if we felt like it. All animated things of any sort would be banned. In case of need, popcorn funnels would fall from the ceiling in front of us along with nozzles filled with butter.

We’d beam in musicians to play live for us. Dead musicians would come back to life for one last concert. We’d try to outdo each other by picking the most outlandish combinations. Tie breakers would involve pairing someone with Kid Rock.

James Earl Jones would read us bedtime stories. He would hang around and narrate our day to us.

I’d get to come to dinner one night on some sort of zip line dressed as Batman.
Come to think of it, I’d need to have the Emperor’s March played as I walked around, at least for a while.

Random things would be wrapped in bacon and they would be tasty.

Favorite authors would complete their next book whenever we finished their current one, even if they’re dead.

We would reclaim our high school appearance minus hair and monkey eyebrows.

Mary says, “Someone would figure out a way to make me less buoyant in a hot tub.”

We’d eat like hobbits with at least seven breakfasts and a few teas. We would not be fat, but we would be happy.

We’d lose all ability to worry. Actually, ‘worry’ and all of its synonyms and remotely related words would be banned from all dictionaries in our presence.

People would be cleaning and reorganizing our house while we were gone. And building on to it. At someone else’s expense. And the HOA would like it.

Real Buddhas would be in every doorway so we could rub their bellies. This would make us enlightened.

The section of Earth we were in would come with temperature, wind, and light dials that we could control. We could set it to sunset, sunrise, or whatever, whenever. We could have 5 sunrises and 6 sunsets a day, and in the same part of the sky if we didn’t feel like moving. Better yet, we’d have his and her dials because we can never agree on temperature.

We could dance, and actually dance well.

We’d have real life Tivo. We could rewind situations and people to amuse ourselves.

Frozen custard chocolate milkshakes would have magical restorative properties shaving decades off my life.

There would be no news channels, or even news for that matter. And by the time we got home everybody would have dealt with all their crap and psychological BS and fixed everything.

Mary would like to have absorbed the entirety of history automatically. Then she really could amuse me with completely random facts.

We might need Xanax vending machines.

Any talk about the bodily functions of children would require banishment to one of those cold places with the tentacled monsters from Star Trek.

Pink Floyd and David Gilmour and me and lasers, lots of lasers. And someone to magically give me the ability to play guitar.

We’d be followed around by mariachi bands by request. Better yet, that band would be bluegrass more than mariachi and would be called Alison Krauss and Union Station.

We’d have improv night with Robin Williams, Patrick Stewart, Chris Rock, Andy Kaufman, Ellen DeGeneres, Rosie O’Donnell, Wayne Brady (natch), and Margaret Cho. Jus cuz.

Michael Flatley et al would get on stage and do the Riverdance. And I’d have a big ol’ fire hose to provide them with the river to dance on.

Stunt doubles would do the hard parts of our day like laundry and sometimes chewing food. Anyone in Cirque de Soleil could be our stunt doubles as long as they behaved themselves somewhat.

We’d have a day or two to invite all our parent friends over so we can recharge the lot of us, complete with wine and Xanax buffets.

A full, four-part choir would order our food for us.

We’d bring in anyone who has ever annoyed us via transporter, and then after bringing Bruce Lee back from the dead, we’d have him kick their butt. We’d hang around for the Bruce Lee v. Chuck Norris main event. No DQ!

Forget 3G Internet. We’ll get like 9G^2 or something. Maybe we’ll just be the Internet for a few days, and everyone else can go read a book. And James Earl Jones will read my email to me, and Twitter, and some of my RSS feeds too if he doesn’t mind.

Our vacation compound will be protected by a division of well-armed Stay Puft marshmallow men.

Every electronic device will obey our commands whenever we begin a sentence with “Computer”.

We will get to make decrees in our new role as benevolent dictators. My first will be to command that Pluto be restored as a planet. I’ll take a long nap to ponder the second decree.

Large overhead conduits will contain the best fair trade coffee in the world. (Larry’s Beans, ftw!) It will dispense whenever I hold a cup in the air, or when I tilt my head back and open my mouth. Mary might like it if all water fountains dispensed English Breakfast.

We will be so rested and refreshed that you will be able to see our radiance from space.

And those people who said all the nice, nurturing, affirming things to us all day will be allowed to come back with us and keep on telling us we’re awesome. If one of those people could be James Earl Jones, I’d weep with joy.

If you could do anything on your ideal vacation, what would it be?
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Dale Jr. turns 1 today. Seems impossible to believe. April was just such a total mess for us, but with May, celebration finds its way through again. Things feel like they are perhaps edging closer to better finally. Maybe we’ll get back to blogging with some regularity soon. Regardless, seeing his happy, joyous face certainly makes everything better no matter what.

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Why is it so hot? Why am I in this handbasket?!

The J-man has been on Spring Break for three weeks now, with one to go. It has been, for the most part, wretched. There has been so much crankiness in our house that I’m surprised it hasn’t split at the seams already. Maybe by this weekend!

Never before have we seen exactly how much he craves the routine of school. The sensory overload of, well, everything he sees, touches, eats, or hears has boggled my mind. I watch him struggle, and watch us struggle with him, and I feel overwhelmed. Tim feels overwhelmed. Dale Jr is still going with the flow, although he will occasionally look over at his big brother like, “Dude. Calm down!” The J-man, whose bedtime and morning routines have been stable for months, has suddenly needed to be dragged (literally) to the bathroom for teeth-brushing and shower, dragged back to his room for clothes, forced into his clothes… and then at night, carried/forced into taking meds and having teeth brushed, manhandled into pajamas… He bit me the other day on the finger so hard that I still have a blood blister 2 days later. He went a couple weeks where he ate nuggets so rarely we were concerned about his protein intake, but thankfully that seems to have subsided. No amount of brushing/joint compressions/smushing has seemed to help.

Of course, none of this is helped by the extended family’s illnesses/surgeries/dramas going on, and the fact that both Tim and I have been absolutely covered up in work. I’m leading a project right now, and I haven’t done that in a long time. Tim is frantically working to meet a deadline, but he can only get so much work in per day, because of having to be with the boys all the time. The house is a wreck, and we don’t have the energy to fix it, but because the house is a wreck, we feel even more stressed.

Tim and I talked last night in bed, and I told him something I had read recently on a blog. Someone said, “Nobody is coming to save you.” They were talking in terms of money, but also in terms of regular life.

I realized that lately, I’ve been reading fiction where there is ALWAYS someone there to “save” the main character. There is always some distant relative you’ve never met who dies (but because you never met, you don’t feel too bad) and leaves you a house, or a huge amount of money. Something relatively small that you were left by your elderly godfather is actually a rare item worth $80K. Or, suddenly a nanny appears who is able to care for your children AND clean the entire house with one hand tied behind her back, and you can afford her full-time. (We actually have someone who comes in for a few hours every couple of weeks, and we LOVE her. But we need more than a few hours!) Somehow, you stop eating because of stress, and look down at yourself and have magically lost 4 dress sizes.

I realized that I have been behaving like somebody was coming to save me. It’s not going to happen. I need to start acting like that.Similar Posts:

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The story of Nadia Bloom’s disappearance and rescue in Florida has made every parent with an autistic child experience something between nervousness and mortal fear. Any one of us knows our child could be in that story.

While our J-Man has not been what you’d call a ‘flight risk’ yet, that could easily change. Our biggest fear right now is that something will happen – like we’re in a car accident – and because he’s barely verbal, he will have no way to communicate with emergency personnel nor understand what they are telling him. Just about any parent with an autistic child has nightmares where our child is in danger and we are powerless to help them.

But what we can do right now is try to prepare as best we can to reduce the chances of harm coming to our children. We might not be able to predict every possible scenario, but we can act to greatly lower the chances of our children ending up in dangerous or life-threatening situations where we cannot help them. I’m sure we all feel a lot of anxiety even thinking about this, but as natural as that is, we can’t let our emotions get in the way of our children’s safety.

I don’t know the first thing about what Nadia’s family did with regard to preparing for possible emergency situations. So this is no commentary on them at all. The ideas below include those that came out of a session we had at school with a local police officer about safety and autistic children, other suggestions I’ve read about, or things we’ve tried ourselves.

[Standard disclaimery stuff - I'm not an expert in this at all. I'm compiling and relaying ideas that I've either learned from others or thought about myself, but whether they are appropriate for your family is up to you to decide. You have to set up a system that best fits your family and that offers you the most safety and security. When in doubt, ask your local autism support organizations, police department, emergency responders, teachers, and of course, other parents.]

Know the signs

Your best defense against something terrible happening is to notice patterns in your child’s behavior that may indicate that they are about to try to escape or otherwise take off in a way that could put them in serious danger, such as running off a sidewalk into a street.

This can be very difficult as often we aren’t sure what is going to bring this about in them or what to do to head it off. Try to keep notes about what’s going on each time your child tries to get away from you. Look for patterns. This is largely about data collection, pattern recognition, and using your parental instincts. If signs indicate that they may be getting to where they feel the need to escape, that’s when you act to preempt it as best you can.

Noticing any strong interests, especially ones that get more intense, may help in knowing when and where they may wander off to fulfill those interests.

No matter what, get a medical alert bracelet

Everyone who has experience with autistic children in potentially dangerous situations has told me the same thing – get a medical alert bracelet. We have put this off too long in our house because we thought he’d never wear it without an all-out battle. I know we’re not the only ones to have this excuse. I’ve talked to a few people in recent weeks who thought the same thing, got the bracelet anyway, and after some initial resistance, it’s now an accepted part of their daily life. The good ones are very sturdy and nearly impossible to take off if fitted correctly.

The officer who met with us at school said that if you do anything at all, get a medical alert bracelet first. She recommended having the child’s name, date of birth, phone number(s), and their diagnosis (or diagnoses) printed on the bracelet. She has an autistic son herself, and she said that while it’s very hard at first to get your child used to it, endure it and deal with it as best you can, but get it on them. It saves lives.

Bracelets are available at a multitude of places online in every material and style you can think of. Some also provide the service for an additional fee – like MedicAlert – of having a number an emergency responder can call to get your child’s medical information, etc. Make sure the place is reputable before you buy anything.

Project Lifesaver

An incredible program that is growing is Project Lifesaver. It’s starting to become available in more and more localities in the U.S. and also globally. We have a small program in our county that keeps expanding as soon as they get the funding.

Project Lifesaver has been commonly used with Alzheimer’s patients but has grown to address the needs of others such as those with autism, Down Syndrome, traumatic brain injury, and more. Persons who qualify for the program are given a tracking device with a unique frequency to wear as a bracelet, which emergency responders can pick up and track with specialized equipment from as much as one to several miles away. It was used to locate an autistic girl who lives a few miles down the road from us not long ago.

If your child has already gotten away from you – at home or in a public place – or you are afraid they will, see if there’s a Project Lifesaver in your community and contact them. They do amazing work. There’s almost always a wait list, so get on it if you qualify.

Internal alarms

Everything depends on preventing your child from getting out in the first place. You want to build up multiple layers of ‘defense’ against escape. If you can’t stop your child from getting out of your house, slowing them down may buy you the time you need.

If your child gets up and wanders around at night, install things that will either keep them in a defined area or that will notify you if they get outside that area.

We have gates up around the house that are mounted directly to the wall that even most adults who visit us can’t figure out how to open. They could be hurdled by larger kids, of course. Some parents switch their child’s bedroom doorknob around so it can be locked from outside the child’s room. This does present a potential fire escape hazard, though, so really think that through.

You can also install those little stick-on door chime/alarms on interior doors. I found this at Home Depot. It’s listed as a window alarm, but I know people who use it on their doors. At $7 or so apiece, it’s an affordable option.

Exterior doors and windows

Slide bolts and chains on your doors installed out of your child’s reach may be enough, or at least it may be enough to slow them down. The kids who are climbers or master escape artists can get past this layer of defense, but again, it slows them down a bit.

Consider possibly replacing your exterior door locks with electronic or mechanical keypads – and protect the code! These mechanisms are supposed to be essentially impossible to work around without the code, though it’s easy to spend $200+ on one of these, so cost becomes an issue. But this leads us to the obvious problem – our little photographic memory kids could easily learn the code. Protect it with your life and change it often.

And don’t forget your windows, particularly any you have on floors beyond ground level where more than just escape becomes a danger. We’ve taken wooden dowels a bit smaller than the diameter of a broom handle, cut them to length, and shoved them into the tracks above some sliding windows to prevent them from being opened without removing the dowel. They can also be locked, but the dowel provides another way of keeping the window shut. I’ve also known people to drive bolts into window frames they don’t ever plan to open. This can cause potential fire escape issues, so think about that carefully.

If nothing else, get the same little chime/alarms I mentioned above and put them on your exterior doors and windows. At a few dollars a piece, it’s an affordable place to start. If you already have a home security system, you can obviously use it instead.

Outside the house

[I know I'm assuming you have a house and a yard but that many of you live in apartments or dwellings that are in some way attached to others. Most of these ideas can be adapted to those environments with some creativity, however.]

First, get to know your neighbors. Tell them your child’s situation and let them know that if they see your child out alone, stop them, and call you or come get you immediately (or call 911 if you can’t be reached). This can be an awkward conversation to have, especially with neighbors you don’t really know, but it’s something we need to do. A friend of mine’s son got out of the house and luckily was found by a neighbor down the street. To say that this is important is an understatement.

If it’s practically and financially an option, fence in your yard. This is a big expense, but consider it if possible. Giving our kids room to roam and play safely is important, too.

Set up ‘outdoor traps’ in your yard or outside your apartment. I wish I could take credit for this idea as it’s brilliant. Here’s where you can leverage your child’s intense interests to great advantage. This particular parent’s child loves pinwheels. So she put pinwheels on various objects and in the ground in strategic places in her yard. One time he got out, but he saw one of the pinwheels and just stood there playing with it rather than continuing to run. It bought her the minute or two she needed to find him and stop him from going further. Figure out how to take your child’s interests and convert them into a system that will at least stall them or keep them from going any farther.

Determine where in your neighborhood your child might go first if they leave your immediate premises. Pay attention to what your child is most interested in around the area where you live. Is it a particular neighbor’s yard decorations? Is it a pool? Is it a playground? Is it someone’s flowers? Is it a street sign? Think about what in the neighborhood correlates to their interests, but also just note their expression as you go around the neighborhood. Do they perk up or stare a long time or appear very drawn to something in particular when you pass it? If so, write that down and commit it to a map. These landmarks will form your emergency search map of where to look first.

In your car

Especially for younger kids, escaping from their car seat can be one of the worst problems we combat. For kids still in the 5-point harness (like the J-Man), you can simply take the lap part that everything buckles into and flip it over such that the button is facing down into the child’s lap. Everything still buckles together correctly in the models I’ve seen. That in itself may be enough. For other kids, especially those using the regular seat belt, there are covers available that make it difficult for them to get to that release button.

And remember, always enable the child locks on the rear doors of your vehicle. If adult passengers riding in your back seat complain, tell them they can walk home.

Our local Autism Society has stickers available to members that you can put on your car window. This lets emergency responders know that your child is autistic and may not respond to any verbal instructions. Here’s an example of one you can buy.

Proximity detectors and location devices

There’s been an explosion of devices that parents – of autistic kids or not – can purchase for tracking their children without needing highly specialized equipment. You may have seen commercials advertising them. They are not without their problems, though.

Because they often do not operate on unique frequencies, if other parents near you also have them on their kids, you might get all sorts of conflicting signals if you have to look for your child. They also may operate in the same frequency range as other devices such as wi-fi, cell phones, or GPS devices. As the world adds more electronic devices into our lives, these problems may get worse before they get better.

Proximity detectors sound an alarm – typically one you carry with you – if your child goes outside a certain, predefined range. This has its obvious uses, but I still think these are more a last resort. A head start of a few hundred feet might prove difficult to overcome, so I’d rather focus on preventative measures of keeping our kids from wandering away in the first place. Also, these detectors may not tell you which direction your child went in, so if the distance at which the alarm trips is out of your line of sight, this is a big problem. Obviously having the alarm is better than not knowing your child has escaped, but you really want to avoid it getting to this point at all costs in the first place.

Location devices are geared to helping you actually determine the location of your child if they wander away. The extent of the range of these devices vary widely. Your ability to get a good signal can decrease rapidly with distance, especially if there’s a lot of electronic interference or structures around to block the signal. Many of them do not tell you exactly where your child is; you just get a signal of the direction they are in, you follow that, and maybe change directions several times as you home in on them. Of course if they keep going and already have that head start, catching up to them may be very difficult.

Some offer GPS capability, which may be the most promising technology for tracking your children. They can give you the potential of quickly pinpointing your child’s exact location at a greater distance. As with these other devices, this technology is still young and changing quickly. Do your research and keep up with the latest developments if you are considering any of them.

All of these devices obviously rely on keeping the transmitter fastened to your child. So always look at how easy it would be for your children to remove it before you use them.

I’m not completely dismissing these devices as I think they show great promise. It’s just that I don’t think the technology has developed far enough yet to rely solely on them. Having these devices may lure some people into a false sense of security. They may be one useful tool in your safety arsenal, but I wouldn’t rely on them beyond that right now.

If you have other ideas, please post them in the comments. It’s always the right time to think about and discuss what to do to help keep our kids safe.

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[Urgent Update! The deadline to submit comments about Sensory Processing Disorder (SPD) for the DSM-V is Tuesday, April 20, 2010. If you haven't yet done so, please send your comments very soon! This is not only critically important for autistic children and adults but for all people who struggle with sensory challenges. Make this part of how you observe Autism Awareness Month. See below for the background information I posted last month on this issue and how you can submit your comments to the right place.]

I’ve said in the past that Sensory Processing Disorder (SPD) – sometimes also referred to as Sensory Integration Disorder – had little or no chance of making it into the upcoming DSM-V. (DSM = Diagnostic and Statistical Manual of Mental Disorders; V = 5th Edition) Turns out, I’m wrong, and I’m not sure when I was last this pleased about being wrong. We have an opportunity we won’t get for almost another generation, so get ready to act.

In short, the DSM is where standard, accepted diagnoses for a huge range of conditions come from. It is the bible for most everything we deal with medically as parents of autistic children. The DSM is one place – and for autism the place – where those five-digit codes (aka ICD-9 codes, e.g., 123.45) you might see on medical forms and reports come from, and it’s the manual that governs our lives with autism more than any other in the health care system. More importantly, this is how things get billed to your insurance, recorded in all sorts of forms as your children are evaluated and treated, or otherwise processed in the realm of health care. Essentially, without one of these codes, it doesn’t exist.

Because SPD isn’t in the current DSM (4th Edition), for all intents and purposes, it doesn’t exist. Of course, all of us with sensory kids know better, but your insurance provider doesn’t care. If you’ve been getting sensory-oriented occupational therapy paid for by insurance in the U.S., your therapy provider has most likely been creatively coding it to get it paid for.

If you’re like us, it’s been billed as more general occupational therapy, of which we get 30 visits a year. Once that runs out, tough. Pull out your wallets. OT limits set by insurers often assume a temporary condition, which obviously does not apply to autism, sensory processing issues, or most anything else we deal with. This makes a 30-visit annual limit profane. And that’s why this is so important.

The SPD Foundation has done an amazing job getting everything organized so you can know exactly how to make your voice heard and how we can all work together to get SPD in the new DSM. The American Psychiatric Association (authors of the DSM) is now accepting public comments on SPD, so this is the time to act. The more data and stories they collect about children and families living with and trying to overcome the challenges of Sensory Processing Disorder, the more likely they will be to include SPD and do so in a way that will benefit our children and millions more.

Here are the links:

• Sensory Processing Disorder (SPD) Foundation – their home page
• DSM Central – Everything you need to know about SPD as it relates to the DSM-V
• Commenting on diagnostic recognition of SPD – A brilliant tutorial on how you should prepare your comments to be most effective and then how to submit them to the right place
• And don’t forget to sign the petition.

Please read these pages carefully before you go and submit your comment to the DSM publishers, particularly the tutorial on how to prepare your comments. For example, don’t talk about insurance benefits; even though that’s critical to us, the DSM authors are there to create standards for medical diagnosis and not wrestle with the nightmares of health insurance.

And remember, the public comment period allows everyone, not just parents, to submit something. Parents, adults and adolescents with SPD, physicians, psychologists, occupational therapists, teachers, researchers, and anyone else who works with or diagnoses persons with SPD can comment. So share this call to action with all those people you know.

The DSM is only revised about every 15 years. That’s not a typo. So we won’t get another chance at this until probably the late 2020s. This is a defining moment for autism and all children with Sensory Processing Disorder, whether they are autistic or not. Go tell your story, and let’s make this happen. Similar Posts:

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