“When you remove the impossible, whatever remains, however improbable, must be the truth.” – Sherlock Holmes
Meltdowns – or perhaps we should call them ’strongly, vocally, and dramatically expressed opinions’ – have become an all-too-frequent occurrence around here lately. I’ve read many posts and heard many stories from parents of autistic children talking about their kids just falling apart in some situations and the frustration and anguish those parents feel in trying to figure out why and what they can do about it. Previously, I’ve listened more as an interested conversation partner, parent of an autistic child, and friend, and I’ve also been thankful that this issue hasn’t much been a part of our lives.
OK, you can welcome us to the club now.
I started writing a post days ago on the stories from this past week, but every day things kept changing. Writing about all this became like throwing a Lego and trying to hit a speeding bullet. So let me take one particular episode and describe it, particularly because it illustrates how we figured it out. And in this case, the remarkable thing to me is that the J-Man and I primarily are the ‘we’ here. We discovered the solution together, and I’m quite proud of that.
Everybody here has been sick at some point or another this week with terrible colds. My head feels like a basketball someone is pumping up with an industrial air compressor. The J-Man has had similar-sounding congestion and an ugly-sounding cough these past couple of days. Dale Jr. has a nose that runs like a fire hose, and he refuses to nap. Mary is the least symptomatic, but also probably more exhausted than everyone else combined. All that is to say that everyone already had plenty of reasons to feel like dirt and have whatever meltdown they wanted to.
The specific meltdown I wanted to write about came later this week during the bedtime routine. We’ve kept the same routine for a long time with nary a problem for months. All of the sudden, he started to completely freak out during teeth brushing. I’d try to brush some more but he just became more and more apoplectic. You could see the desperation dialing up in him.
As a rule, if we keep the same routines in certain situations, that gives us a fairly finite set of things we can check for potential meltdown-causing issues. Bedtime is pretty simple and unchanging in our house. He comes upstairs, goes into the big bathroom, I take his shirt off, give him his pill, and then give him his two liquid meds. He went through these just fine as he has for ages. Then I brush his teeth, first with his toddler toothbrush with non-flouride toothpaste and then I ‘rinse’ out his mouth using a wet washcloth that I run around in there with my finger. I barely got the brush in and one or two passes on some teeth before he became frantic.
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by Mary on September 10, 2009
I’ve been thinking lately about the Just People. And the Should People. And especially the Should Just People.
You know them. You may have even been them. I sure was!
“Why don’t you JUST make him do it?”
“You SHOULD go GFCF because it helps all kids with autism.”
“You SHOULD JUST ignore him when he does things like that because he’s only pretending that it bothers him.”
There are the My Child People, the In My Day People, and the All Kids People.
“MY CHILD would never be allowed to act like that.”
“Well, IN MY DAY, parents actually parented instead of this “make sure his needs are met” stuff they do now.”
and my favorite:
“ALL KIDS are (insert some small issue compared to all the other issues) at this age so why do you think it’s any different for you?”
Well, I’ll tell you what…
If you JUST listened to parents or to people with autism, you might understand better. You SHOULD do some research on your own and not believe everything Jenny McCarthy says. You SHOULD JUST ignore people who go on TV and make blanket statements about people with autism. MY CHILD is acting in a way that makes sense to him at this point. IN MY DAY, we parent by making sure his needs are met. ALL KIDS are special in their own ways, no matter what you think.
Maybe if we all remembered all of that, we would in fact realize that people with autism? Are Just People too.
For quite a while now, the J-Man has been a Lego-maniac. We see this as a very good thing as he wouldn’t touch building blocks of any kind for forever – we suspect for a variety of sensory – particularly tactile – fine motor, and other motor planning/spatial relating sorts of issues. Like many other things, one day it just clicked and now he’s a building machine.
Our building fun currently comes with one significant issue we need to keep an eye on. He’s doing better and better with structured building activities based on a picture (build the simple structure in this picture – like six blocks of alternating colors in one column) or a finite number of blocks (assemble the blocks in this box in whatever way you want, but when they are all together, you’re done).
However, in ‘free build’ mode (here’s a bucket full of blocks, have at it), things can get much more difficult for him. He will sit there and essentially build the same structure over and over again until you stop him. It’s usually an impossible-looking, very tall (20-25+ Duplo blocks high often), skyscraper-like thing that is asymmetrical, defies many laws of physics and building codes, but that generally looks very impressive considering getting him to put two Legos together even a few months ago was nearly unheard of.
But since – despite his best efforts of steadying it with hands and even feet – the structure becomes too unsteady to stay upright. So it falls, breaks into several pieces, and then he tries to reassemble it back to where it was, which continues on to the same collapse of the same building and the repeat of the cycle.
One facet of this I’m not sure whether to be concerned about or not is the constant moaning he does while he’s building. He does vocalize in that way in other contexts, but not to the droning length it goes to while he’s building. He only pauses to breathe. I’ll admit it does wear on my nerves with a crying baby often nearby to add to the chorus. But besides that, this is an instance where reading his vocalization cues is hard for us.
Since he loves blocks so much, I feared interrupting this the other day, but I had to. His structure had the moment before collapsed into about four long sections, so I just took the open blocks bucket and said, “Time to clean up!” No real initial resistance, though he seemed to be largely ignoring me at first save for a brief interruption in the moaning. I just kept talking. “You made some awesome buildings today, and now it’s time to clean up! Daddy will start!” So I took a few extra blocks that were around the floor (not part of the original big structure) and put them in the bucket.
Then I said, “Now J-Man’s turn! Put in!” And much to my surprise, he hurriedly put those sections that had just a minute ago been part of that building and put them right straight into the bucket as they were. He then took what was left of the bottom of the building apart in a couple of quick motions and took the three pieces that left him with and put them in the bucket too. He grabbed the nearby lid, laid it on top of the bucket, and asked for help (“heh” or sometimes the halting but very interactive “Iiiiii wahhhhh heh”- “I want help” for the uninitiated) I pushed down on the lid until it clicked – and this bucket is hard to seal. In barely 30 seconds, the giant bucket of Duplos was cleaned up, mostly by him. Never would have predicted that one.
He sat there in his “I feel relieved” posture – upright, shoulders relaxed, eyes looking thoughtfully at something nearby, no stimming, no more groaning, and in a place receptive to maybe using some words if he feels like it. If he’s in a place where he’s really stressed and bouncing off the walls (literally), if we get him to where he’s in the relieved posture (through a whole repertoire of calming activities), it’s like J-man’s way of saying ‘thank you’. If you sit near him then, you can feel a real tenderness in his spirit that is the essence of who the J-Man is, almost like the real him underneath the stimmy wildman exterior.
OK, so one of the morals of the story. If you find your kids perseverating on something in a way that it seems like they’re stuck in an infinite loop, they may very well be stuck. Find a transitional cue and activity to end their loop and bring them to whatever the next thing should be. You may get resistance or meltdowns, both of which have happened here. But you also may discover what it looks like when you need to ‘rescue’ your child from their infinite loop. They may not know the way out, and if so, you have to show them. These are the sorts of decisions and actions they may rely on us to take for them until they can hopefully begin to learn that skill for themselves.
To the issue of Legos, a new Lego Store just opened here and I’m dying to go. I heard they built an 8-foot-tall Yoda for the grand opening. Squee!
by Tim on February 16, 2009
This week marks our one-year anniversary of blogging. And what a long, strange trip it’s been already. Join us as we look back and look forward this week. First, here are a bunch of things we’ve learned along the way so far, though it’s hardly comprehensive!
- There are a lot of good people in this world.
- We’re not the only people in this world who are confused, fearful, crazy, determined, or in need of a lot of support.
- No matter what issue you are facing, others have either been through it or currently are in the same situation.
- There is always somebody who knows how to do something; you just have to ask enough people.
- We are intelligent enough as parents to learn how to do a lot of stuff on our own. So are you.
- Therapists are still worth their weight in gold, and they are severely underpaid.
- Skilled, caring teachers are a divine gift.
- Don’t give a rat’s butt about those who judge you. This isn’t about them.
- Surround yourself with people who support and affirm you and your child. You have permission to use profanity with everyone else if you want to.
- This is a marathon, not a sprint. Pace yourself.
- The beginning is the hardest. I don’t know that it gets simpler, but the more experience you get under your belt, the more competent you’ll feel.
- There are too many negative messages about autism in the media, and these messages make too many parents who just received a diagnosis feel like the world is ending. We need a new message. So much good lives in our children, and autism has so many unique gifts to bring to the world. Why can’t we talk about that for a change?
- When you get a diagnosis, you feel like all your dreams died that day. In a way they did, and you have to go through the process of grieving that or you’ll go crazy. But you get the opportunity to go out and make plenty of new dreams that are greater than you imagined possible.
- There are parents who have gone ahead of us to clear the trail, and we are grateful to them for showing us the way. As you move down your own trail, don’t forget to look back and help those still making their way.
- Decide only what the next step is, and then go do it. If you sit down and try to think through the enormity of everything that you think has to be done, you’ll feel like you are drowning. One foot in front of the other is the only way you’ll get there.
- If you want something, you gotta go fight for it. You don’t get a lot of things given to you freely, and the institutions of the world aren’t often supportive.
- Too many parents are struggling with woefully bad local schools and services, inadequate help, crappy health care or no access to care, lack of availability of informative resources, little or no support, and crushing financial expenses. All of this has to be addressed. We need a better way, but we have to go make our own change.
- There is way too much unhelpful crap about autism on the Internet. What is helpful is hard to find, and often harder to use. We need to build something better.
- There are a lot of amazingly creative people out there coming up with inventive techniques for working with autistic children. I wish I had a few ounces of what they have.
- There are no quick fixes. Sorry. Anyone who offers you a quick solution is selling snake oil, and is most likely just full of it. If it sounds too good or too easy to be true, it usually is.
- Don’t accept everything everybody tells you. A lot of stuff out there is garbage. You have to learn how to think through and analyze what you read and hear, and then you have to determine whether it’s worthwhile or junk. There’s a lot of both out there, and it’s a pain to have to use up valuable energy figuring it out, but you gotta do it.
- I try to keep a positive attitude, but some days just suck. It’s OK that this happens.
- I don’t want anyone to feel sorry for us, because I don’t.
- You can’t do everything; all you can do is the best you can.
- If you feel like you constantly have to be doing something therapy-related with your child, step back for a while and just enjoy them. Never forget this is about building a relationship with your child and enjoying them for who they are.
- I don’t want autism to be an excuse for setting the bar too low for our son. I don’t want to make excuses for him. Plus, every time we’ve wondered whether we’ve set the bar too high, he flies over it.
- Never underestimate what your child might someday do. They are full of surprises.
- Wake up every morning expecting something to happen that will blow your mind. It often works out that way.
- As awful as we felt in the beginning, we’re here, we’re thriving pretty well, and we’re making good progress.
- Your child possesses amazing gifts just waiting to be discovered.
- They know more than you think they do.
- This has been the greatest challenge of our lives, but we are meeting it with an even greater determination. This is the hardest thing I’ve ever done, and I wouldn’t trade it for anything.
- The J-Man shines ever brighter and more wonderfully every day. It’s hard to imagine him being any more wonderful. He has made us better people, and we are thankful for him.
And most importantly for me, the J-Man has shown me my purpose in life. He has taken everything I’ve ever done, learned, been a part of, struggled with, and sought out and showed me what it looks like when it’s brought together and made whole. He has taken the best parts of me and helped me express them, and he has taught me how to take all the old worries, hurts, and burdens, lay them down, and keep walking onward to see what’s next in this adventure. It’s because of who he is that he could teach me all that.
Feel free to share in the comments what you’ve learned from your journey. Thanks for reading!
P.S. A bonus – check out all the things my grandmother taught me over the years that make such a difference for me now.
by Tim on January 6, 2009
[Note from me: This is another draft installment of that collection of essays and reflections that I hope to someday compile into a book. The first one I posted was "What if he never talks?", though I plan for other posts here to someday appear in that collection too. As always, comments are welcome.]
The 439 Stages of Grief
Pretty much every parent who has ‘gotten the diagnosis’ goes through grief, even if they expected to hear the word ‘autism’. We have in our minds from the moment our children are born ideas and images of how we see the story of their lives unfolding. Sitting in a chair and hearing that word used for the first time about our child wasn’t part of that.
Every parent’s story begins with imagining first smiles and first steps and first words. We saw ourselves playing catch with them in the yard. We watched them chase with the other kids in the neighborhood. We saw them going to their first day at school. We heard our cheers mixing with the other parents’ as our children ran down the sports fields after school.
They went to middle school; they started having crushes and eventually – God forbid – their first girlfriends or boyfriends. They kept growing into tweens and teens. They learned to drive and went to prom and graduated, in our dreams always with honors as the valedictorian.
They’d leave home, and already we felt sad even with that still two decades away. They went to a top college and earned their degree with distinction, of course. They went on for more school or got an important job and made a lot of money, striking out on their own in this great big world.
We hoped they would find someone perfect for them who loved them and whom they loved equally in return. If they so chose, we hoped they’d bring children – our grandchildren – into the world. And we watched the dreams and the stories continue with our next generation, as they have for millennia before us and as they will for all our days on this world.
Almost fundamental to being a parent is our desire for our children to be free of all barriers to their potential so that even the sky itself isn’t a limit. We want the fairy tale for them. When we heard the word ‘autism’, that sky, and the story, fell in a blinding flash of fire, leaving only a blank page set against an empty horizon.
But this isn’t how the story really ends; it’s how a new one begins. The blank page waits for us to choose how to write our true story. But those of us who got the diagnosis know that at the beginning you cannot conceive of a single word to write because you just watched the whole thing burn up in front of you. You’re still holding the ashes of everything you thought was going to happen.
This is grief, pure and simple. You will have to sit with these fistfuls of ashes and this book full of blank pages for as long as it takes to grieve. You will let everything fall to the ground and sit in these ashes and feel like the world may end. You will be angry at everything and nothing. You will look for people to blame; you will look for anything at all to blame; you will blame yourself. You will promise anything, do anything, bargain with anyone to find a way to get your child – and yourself – out of this. You will just sit motionless on the floor and cry yourself down into a bottomless lake.
And at some point, you will come to a place where you have to decide what you’re going to do. You will stare down endless, featureless paths and have to decide which to take without having any idea what’s down them. You can keep bargaining and railing against the world and giving yourself and your child completely over to the next person who says they can help without caring how crazy they might be. You can drive yourself mad with guilt.
Or you can willingly choose to turn yourself directly into the fury of the storm, grit your teeth, and take one, single, determined step forward. You can sweep your arm behind you, cradle your child behind your leg, and block the wind for this perfect little child you love more than anything in this world.
And this is the way it begins for all of us, with one, single, determined step.
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by Tim on December 28, 2008
One of the most important things we can do as parents is to monitor our ‘internal dialogue’ about ourselves and our kids. What I’m calling ‘internal dialogue’ are the things you say silently to yourself or otherwise think about over the course of your day. If you haven’t noticed yourself doing this, you probably will now, and you’ll find you do it a lot.
These things can be worries about the present (“We’re never going to be able to pay these bills.”) or the future (“He’s never going to be in a regular classroom is he?”). Or these can be concerns about your child’s progress (“He still hasn’t figured out how to put two lego blocks together.”) or how she’s falling further behind her peers (“Our neighbor’s son is now speaking in paragraphs, but she’s still barely using one word at a time.”) As you listen to your internal thoughts, you’ll hear these and countless other kinds of things going through your head.
The key here is that much of what goes through our minds during the day isn’t very positive. When things are difficult, this is just how it often goes. As a result, the weight of all this can make managing things that much more difficult, plus it makes it nearly impossible to maintain your perspective on life, your family, and your child. You know you need to marshall every bit of energy and drive that you can to do what your child needs you to do.
Here’s about the best and quickest way I’ve found to regroup, focus on some positives, and reset your perspective. You may think at first that this sounds a bit contrived, but to me it works. Plus it has made a big difference in my life.
What is it? Write down your concerns about your child or yourself and start rephrasing those statements as strengths.
Here are some examples of concerns and then one idea for how to rephrase them. Obviously, you’ll need to come up with your own and the way to rewrite them that works for you.
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