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.
[click to continue…]
by Tim on February 25, 2010
Not surprisingly, we’ve had a rough go of things lately. So I was thrilled to get our child care person in for about four hours yesterday. We know we can hand the reins of the house and whatever else to her for a few hours and do whatever we need to do. We’ve found a variety of ways to reduce the amount of money we spend on various things during the month, and we’ve used some of that savings to pay for occasional in-home child care, which lets us have a few opportunities to get some things done and generally get a break.
Yesterday for me was the truest form of respite care. I’ve been so tired lately that I feel delirious much of the time. All the lack of sleep that went into all of us traveling to my grandmother’s funeral and all the extra emotional exhaustion that went with it has just about done me in. Having her come over is always a godsend, but yesterday felt close to a miracle.
She got here about 12:30, I did a couple of quick chores, and then fell into bed, piled on the blankets, and tried to sleep. It took me a while to unwind enough to rest, but finally I could feel myself sinking into something close to unconsciousness. I slept until about 5:00. I barely even knew who I was when Mary nudged me and told me it was time to eat dinner. I probably could have slept another 24 hours.
I imagine that most of us develop a pretty high tolerance for lack of sleep, mental and physical exhaustion, and all sorts of stress. We build up the equivalent of Kevlar armor like our own brand of callouses. If we don’t, we fall apart. I’ve drunk enough coffee lately to keep half of Central America in business and eaten enough donuts and sweets to stone an elephant. It’s another coping mechanism. But I’m realizing that this is like charging all that energy we put out on a credit card; eventually you have to pay it back somehow.
One of my words for the year is ‘bamboo’, but I’ve been more like a gnarled, old tree lately. While I have been giving myself some latitude within the understanding that this is so much about grief, I can’t keep this up. Life doesn’t wait around for us. It’s not like I can tell the kids to take a couple of weeks off from being themselves while Daddy regroups. Finding ways to grieve and rebuild myself at the same time is just something I have to start figuring out.
Mamaw frequently gave me a piece of advice that I often didn’t care to follow. Don’t dwell on the past, acknowledge it, move on and move forward. She tried to have this attitude about everything. I don’t think I got this at all until after the J-Man was diagnosed. I guess I liked holding on to all the psychological debris of my life as if not to would be to deny who I am. But I think what she was getting at is that holding on to all that stuff requires us to pay a steep toll, and paying it costs us and our families too much.
I invested a lot of time and energy doing what I needed to do for her obituary and funeral because I wanted everything to be perfect for her and to honor her in the best way I could. I am content with how things turned out. I feel like right now she would be gracious and thankful to us for that celebration of her life, and with her next breath she’d kick us in the behinds and tell us to get moving on with life because our families need us in the here and now.
I finally understood today that we honor her not with how much sleep we can get by without or how much coffee and donuts we can consume, but by the way we build up our families, do good for others, spread some laughter, and keep trying to leave the world a little better each day. She left us the blueprints for a well-lived life. It’s about more than survival and getting through the day; it’s about living a life that others will want to honor and celebrate, just like we did hers.
by Tim on February 16, 2010
My grandmother passed away at sunrise on Sunday, February 14th. It was the first sunny morning in her town after many, many days of cold, wintry weather.
Everyone noticed how bright and colorful and warm the sky looked. Of all that she taught us – so much that it would take volumes of books to tell – we think that wonderful sunrise was her last teaching to us. No matter how bad things seem to be, there is always light that will shine into our lives if we decide to let it.
We’re finishing up our multi-day, mad scramble to get out the door to go up tomorrow for the funeral. This has been very hard for me to talk about these past three days. I’ll write more after we get home, but for now, this is part of what I wrote for her obituary. I took my own advice and wrote a series of six-word stories about her.
I want to thank everyone for your support, thoughts, and prayers over the past several weeks. It’s meant a lot to us, more than you can know.
Six-Word Mamaw Stories
Superheroes wear aprons, get hair fixed.
Stood straight, head high, facing forward.
Uphill, both ways, overcame every hurdle.
Didn’t dare tell her she couldn’t.
Cleaned her gutters, because she could.
Brightened every day with infectious laughter.
Nobody went hungry at her table.
Soup beans, cornbread, fried potatoes – home.
Plates always full, glass never empty.
Always constant, our family’s true compass.
With every breath – grace, dignity, strength.
Watched over us, and always will.
Best in us comes from her.
Nothing is more important than family.
Love everyone and everything God made.
You can’t love someone too much.
Make your home everyone’s safe place.
Provide more than what people need.
Leave porch light and coffee on.
Hot biscuits and gravy cure anything.
Enjoy life; go back for seconds.
When times get rough, tell jokes.
Be a survivor through every challenge.
Your legacy lives on in us.
We remember everything good; we remember.
Rest now, surrounded by our love.
You are forever in our hearts.
by Tim on February 6, 2010
My grandmother is still with us, but her health continues to worsen. She’s had some OK days, but the last couple of days have brought a more significant decline. I’m starting to expect the phone to ring any minute. I’ve constructed ways to detach myself from that inevitable moment. I realize I’m pretty good at walling things off. When I drop those defenses, I start to lose it. I guess I’m the kind of person who has to grieve a bit at a time.
Between scrambling to finish work projects that have about sent me over the edge to dealing with snow and snow days (and the resulting craziness that comes from everyone being off schedule), I’ve had plenty of opportunities to wrap myself in other things. Even when life is really busy, I normally still try to write or read something or reflect about life or do something that grounds me. Now all I want to do is zone out and forget about the clouds hanging over us.
I’ve assumed the responsibility of writing my grandmother’s obituary and funeral bulletin. Writing usually comes easy to me. This feels more like climbing Mount Everest. I stare at the blank screen and feel paralyzed, but I know if I wait until after, I won’t be able to do it at all. I try to do the less emotional parts like listing surviving relatives just to make some progress. When I get into more complicated details like colors and pictures and design, my brain just shuts down. It’s taken me days just to be able to sit down and write a blog post.
The most important part to me is that I don’t want to write some dry account of her life. It’s not like we get to publish a small novel in the paper, but it needs to say something worthy of her. In addition to the factual details that go into obituaries and funeral bulletins, you do get room for a paragraph or two to summarize someone’s life. But this is not just any someone; this is the someone who has kept all the mismatched parts of our lives woven together since the day we were born.
A year or two ago, somebody turned the idea of six-word stories into a popular phenomenon. The idea is to try to tell an entire story in six words. It sounds impossible, but I’ve read some fantastic ones. (Samples here via Wired and here at the Six Word Stories site) Then came the natural extension of that – six-word memoirs. (the Smith Magazine project and illustrated ones at NPR) The suggestion I read: write the six-word story of the person’s life and let that guide how you write their obituary.
This certainly isn’t easy either, but there is something more focused and less daunting about it. You can’t encapsulate an entire life this way, of course, especially not one full of rich stories that touches countless people. It does, though, let you capture one particular theme or characteristic or truth about someone that can speak to the whole of their lives. In a world full of words and noise, perhaps this is the path to speaking simply and clearly to what’s most essential and fundamental about someone and what they stood for.
So while I sit down this evening to reflect on that for my grandmother, I encourage you to try it out for yourself and your kids. Thinking about your life, what would your six-word story be? What would it be for your kids? What about just something that happened today? What about six words about autism?
by Tim on January 27, 2010
If you follow us on Twitter, you may have read that my grandmother’s health has taken a very bad turn. Her cancer returned with terrible force and swiftness, and now we are holding our vigil and trying to keep things together as best we can. I dread the phone ringing. I don’t think it will be long now.
I got the news about her health this past Thursday, and by the next day it had already gotten much worse. I had originally bought a last-minute plane ticket right after I first heard the news to fly up last Saturday, but her deteriorating condition was too much for me to wait that long. I couldn’t take the chance of waiting that extra day. I threw some luggage in the car, left Mary with the kids, and drove as fast as I could to get there. I arrived just as she was going to bed that night. I hadn’t seen her in about four months. I nearly fainted. I just wasn’t prepared to see her so frail.
As I should have realized, though, her body is frail, but her spirit is irrepressible. There she was telling jokes and picking on people and being the person I’ve always known even while she was in pain and struggling to do even the most basic things. It was a lesson in strength and dignity that I’ll never forget.
In celebration of her 90th birthday in 2008, I posted “What My Hero Taught Me About Parenting an Autistic Child”. A few people encouraged me to share it with her, but I never wrote here what happened after I did. The short version is that before she went into surgery earlier last year after her cancer first started, I had my sister give her a printed copy of it. She said she read it several times a day when she was in the hospital that first time, and most days since. There’s no way I can put into words – particularly without bawling my eyes out – what that means to me. And it was the last thing we talked about before I left to come back home Monday. In all likelihood, that post will be our final shared memory. I draw some measure of peace from knowing that she will go to her eternal rest knowing how much she has meant to me.
I will have much more to say about her and my visit up there in future posts. Right now, the emotions are too strong and raw for me to keep writing. More than anything, I just want her last days to be as comfortable as possible where she feels surrounded by our love.
