Child development books typically portray your child’s growth as a gradually, but steadily, up-sloping line described in neatly organized groups of milestones and checkboxes. Days like yesterday promote the idea that a book about autistic child development would be rather like taking a bucket full of checkboxes, strapping that bucket to a roller coaster, and then hitting the big red Launch button. Needless to say, with the J-Man we threw that book out long ago. It was too stressful, constraining, and not helpful anyway. (One funny sidenote – he actually likes to sit on the couch and thumb through the Your Child’s First Year development book. We’re still not sure what he gets out of that.)
We can spend weeks at a time struggling to get over what seems like the smallest hurdle, though we all know there is no such thing as that in our worlds. The last couple of weeks in many areas it feels like we’ve gone backwards. Then you have days like yesterday where things come seemingly out of nowhere, and you have no idea how they suddenly sprang up. Sometimes we refer to these as ‘quantum leap days’, or ‘leap days’ to keep it simple.
So yesterday the J-Man:
- Fed the baby!!! With a real spoon! With real food on it! And with a great deal of care! We helped him scoop the baby food on to the spoon, and then he did the rest himself moving it carefully to Dale Jr’s mouth, which he accepted with open mouth and unblinking eye. Mary and I almost both fainted.
- While we were outside swinging (beautiful day yesterday too!), I asked him whether he wanted to go inside now or do more swinging. He replied without hesitating using our syllable-at-a-time verbal exchange method that we’re trying to invent a term for, “I want swing.” (his verbal approximation is close to “ssss-wuh-eee”) Wow!
- On top of that, he actually walked to the swing by himself. It did take some coaxing and he wasn’t super happy about it, but he did it. Normally we have to carry him out into the backyard or he has a meltdown on the back porch rather than walk out into the yard without being carried. Again, he wasn’t pleased but he did it!
- While sitting at the dining table, he said (again using our syllable exchanging) “May I be excused?” No kidding. He learned this from a Signing Time video and The Blessed Lady Rachel Coleman long ago, but he said it this time actually at the table in a contextually appropriate way. Woot!
- He went to the kitchen sink and reached for the faucet, which I’ve never seen him do. He said, again a syllable at a time, “I want wash.” Wash hands! After getting over my surprise, I told him we needed to wash hands in the bathroom, which wasn’t what he had in mind at first but then was fine with it. He did want to hang out and play in the water, so we ended up washing hands twice but stopped it there. Still not sure why he asked – his hands weren’t really dirty – but hey, we’ll take it!
- He was very cuddly with Dale Jr. in a way that’s showing he’s relating to him more as a person and brother now. He’s been doing this more and more in recent days, but he was very sweet with him in particular yesterday. The J-Man kinda burrows up next to him. I know this is in no small way a sensory-seeking thing, but you can see more and more how he enjoys the baby’s company. And of course, Dale Jr worships the ground he walks on already.
- All about the ‘family pile’ -The J-Man wanted us all to ‘do pillows’ yesterday morning, which usually involves just one of us resting in the floor on a pillow – or a pile of them – with him. When he indicates he wants this, he’s asking for a sensory break and for help regrouping. This time he started pulling us all into the floor with him, baby included. One could say he was arranging us as his sensory aids, but we could tell this was more an intentional, affectionate act. He didn’t seem particularly out-of-sorts sensory-wise; he just wanted to be close to us.
What was particularly awesome is that these involve two areas he really struggles with: communication and interpersonal relationships. That makes these achievements all the more sweet.
After hundreds of iterations of practice to help him acquire a new, simple skill, sometimes he comes out of nowhere with something that you don’t even remember practicing. Then there are others you know he’s at least seen or heard before if not drilled repeatedly on it, but no matter how much you’ve tried to coax it out of him he may not respond until one day he just up and does it on his own with no prompting at all. There are others still that have involved epic meltdowns on every attempt until one day it seems like a switch got flipped. This is both the mystery and frustration of autism, but to me it’s also one of its greatest wonders.
There are plenty of days – perhaps most of them – where waking up and having no idea what might happen is a scary prospect. Sometimes what we fear comes true, and sometimes we get something different entirely. And then there are days like yesterday with plenty of the challenging autism things still happening, like trying to shepherd his easily overloaded sensory system through the day, but in between all that we discover little furrows where seeds landed unnoticed, scattered there by some unknowable wind or force, which grew hidden for a long time and then suddenly burst forth.
We’ve made it to the season of light and growth and bloom, and finally we have some warmth after a long, cold winter. That doesn’t guarantee anything, except that today, anything could happen.
“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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March 3, 2010 has been designated End the R-Word Day. We encourage everyone to go to R-Word.org, join the tens of thousands of people who have taken the pledge, and spread the word to end the word to everyone you know.
The r-word is derogatory and demeaning toward our children and to everyone with intellectual challenges. The words we use in our everyday speech matter. We hear and read all sorts of negative language about our kids. It’s time to change that. Both Hands and a Flashlight has taken the pledge to work to eliminate the r-word and set a new and positive tone. We hope you will too.
Many of us are not without sin in having used this word in the past. I confess to my shame that I once did so. It is time that we all resolve from this point forward to eradicate the word from our vocabulary. Let’s commit ourselves to a new r-word – respect.
Take the pledge today, and for more information and resources see the Spread the Word Toolkit.
by Tim on January 18, 2010
I humbly ask Dr. King’s forgiveness for borrowing from his eloquence and for the meager quality of my own words as I draw from his gift to us, one of the most transcendent speeches in our history. All generations after him will be asked to tell about their dreams for our world. Here are some of mine.
Our futures are inextricably bound together. We cannot walk alone. And as we walk, we must make the pledge that we shall always walk forward. We cannot turn back.
Whenever local, state, and federal governments and the schools within our communities give us and our children so little and then tell us to be satisfied that we even get that, let us say, “We are not satisfied, and we shall not be satisfied until every child has a fair chance to realize their potential and all prejudice is washed away by the tidal wave of our determination and love.”
Let us invest ourselves fully in our families, go into our communities, and do the hard work that has to be done and not wallow in the valley of despair.
Though we face the difficulties of yesterday, today, and tomorrow, I still have a dream.
I have a dream that our children will not be judged by what they can or cannot do but valued for who they are, just as they are.
I have a dream that whenever someone either cannot or is not allowed to speak up for themselves, the very stones in the ground shall cry out and we will all stand and proclaim the immeasurable worth of all.
I have a dream that all persons with disabilities will be treated as equals and afforded equal rights and access in every aspect of their lives.
I have a dream that all children will be treated with respect and provided the education and services they need to express their gifts to the fullest.
I have a dream that wherever injustice is committed against an innocent child that we will respond tenfold with unity, conviction, and action.
I have a dream that people will have access to the vocational training and assistance needed to work and live independently and follow the path they feel called to.
I have a dream that schools will not have to hold bake sales and raffles to pay the bills and that teachers won’t have to buy supplies from the money in their own pockets.
I have a dream that teachers and therapists will be valued and paid at a level nearer to all the miracles they perform everyday.
I have a dream that more money will be spent on services and support for both children and adults.
I have a dream that whenever any of us begins to fall there will always be another to help them back up again.
I have a dream that instead of judging we will take the time to understand.
I have a dream that what unites us will be stronger than what divides us.
I have a dream that we will always be thankful for those who started on this path before us so that we might have faith that we can walk the road that still lies ahead of us.
I have a dream that no one will ever again be forced to choose between getting care and services for their children or buying food.
I have a dream that everyone’s voice shall be heard, regardless of whether it comes out of their mouths, their hands, a computer, or a picture board.
I have a dream that where so many now see despair, damage, and burden that we can instead all discover and proclaim hope, beauty, and opportunity.
I have a dream today.
by Tim on January 8, 2010
I think I’ve finally settled on my three words for 2010. Luckily, ‘timeliness’ isn’t one of them.
Proclaim – This is about committing to writing in many forms, whether that involves my writing projects, blogging, other social media, articles, writing letters to Congress, or anything else where I can speak what’s true to me and advocate about what’s important to me, particularly autism and children. And this is not just putting words on paper or screen; proclaiming is writing emphatically and ramming the exclamation point down into the table.
Connect – To personally connect with more parents, educators, therapists, specialists, technologists, and others who have similar experiences to mine and foster the relationships I’ve already made; to help people connect with each other so they can learn and get the information and support they need; and to connect people with quality online resources that help them become better parents, carers, educators, or therapists. This includes actually responding to my e-mail and our blog comments in anything resembling a timely fashion – which I’ve clearly and epically failed at for a long while now – as well as participating on others’ blogs.
Bamboo – This one requires a bit more explanation. Bamboo is – among other things – an important symbol in Zen Buddhism. It is very strong, flexible, supple, and resilient. It will bend under tremendous weight but not break and still be able to snap back to upright when the weight is gone. It responds exactly as it needs to under pressure, bending neither too much nor too little. It is the opposite of tension and rigidity. It has a profound ability to flex and adapt even to vast changes.
I wanted to find a simple word that for me captured the foundations for physical health, emotional health, and attitude. I think in order to be like bamboo you have to find ways to bring yourself more into balance, take care of yourself so your body can respond to things in the right way, practice a lifestyle that fosters calm, flexibility, and ease in the midst of great challenge and adversity, be open to opportunities and gifts that come from being a parent, and nurture a positive attitude about life.
Of course, if I manage even a fraction of any of that, I may try to cure cancer while I’m at it. 
But by trying to be more like bamboo, I think I’ll be a better father, husband, and friend.
One of the activities that pondering bamboo has led me toward is something I discovered called a ‘gratitude journal’. I at first thought of it as incredibly cheesy, but after doing it for just a couple of days I felt a noticeable change in my perspective. Being the geek that I am, I do this on my iPod Touch using an app – not surprisingly – called Gratitude Journal. (Link opens the App Store in iTunes – it’s 99 cents) Just open an entry, type some things that happened that day that you’re grateful for (shows up basically as bullet points), and you’re done. If you feel like it, you can rate your day 1-5 stars and drop a photo into it, though neither are required. It takes maybe two minutes, but I’ve found it a great addition to my day.
Have you decided on your three words for 2010 yet? Would love to hear them if you want to share!
by Tim on November 29, 2009
These past weeks have been a serious reality check for us. All of us have been sick, hurt, or both at one point or another. Not surprisingly, this has weakened both our physical and emotional defenses. That’s a nice way of saying that we’ve turned into a bunch of grumpy, rundown, sick people who aren’t coping well.
I tend to process things best by writing about them. This has been one of those periods where every time I sit down to write, my brain just locks up like an overloaded computer. If nothing else, I guess it’s made me appreciate perhaps a little of what days are like for those of our kids whose brains are overwhelmed most of the day every day.
It recently became evident that we were losing control of most facets of our life. The J-Man was obviously experiencing some significant changes to his sensory system, and seemingly none of them for the good. He seems to shoot wildly between wide-open, screechy, running around, stimming overload to almost totally shut down. It’s hard for him to find a happy medium. That on top of all of our physical and emotional wear-and-tear and stress so thick you could cut it with a knife, we’ve been fast reaching an unsustainable place in life. And then last week it became really clear that it was worse than we thought. (More on that in a second.)
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