by Tim on October 26, 2009
I heard this in an audiobook I was listening to while waiting to pick up the J-Man from school. An elementary school parking lot is not the most ideal place to get emotional, but I doubt anyone noticed, and who cares anyway.
It feels like it was written for parents like us. It’s beautiful, and it speaks volumes to me right now. Maybe it will do the same for you.
Hold on to what is good, even if it’s a handful of dirt.
Hold on to what you believe, even if it’s a tree which stands by itself.
Hold on to what you must do, even if it’s a long way from here.
Hold on to life, even when it’s easier letting go.
Hold on to my hand, even when I have gone away from you.
~ A Pueblo Blessing
by Tim on September 13, 2009
I wish I had some brief, non-whiny-ass way of talking about this, but it’s just going to be what it is. This is a subject many of us avoid because we don’t want others to think we’re weak or talking negatively about our life as parents. But tonight I feel like being honest about it.
Someone once gave me the most appropriate term that I think exists for how I’ve felt the last few days.
I am bone-weary.
It’s a good thing I recently read an absolutely brilliant blog post by Rachel Coleman (aka Rachel of Signing Time!, also aka J-Man’s Secret Crush) called Strong Enough to be Your Mom. I highly recommend you go and read her moving story.
The day after the J-Man’s annual pediatrician’s visit about two weeks ago – where I had to carry him around for an hour and do some awkward holds during the exam – I started to feel a building pain in my low back. And it just got worse and worse. Within hours of when it started, it got to where I couldn’t bend more than a few degrees from vertical in any direction. I couldn’t sit and I certainly couldn’t sleep. I took some ‘real’ pain pills (which I only do when it’s really, really bad), and I might as well have been eating candy.
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by Tim on January 25, 2009
If any special needs and disabilities advocates are looking for a motto, here’s a good one.
“Blessed are they who see beautiful things in humble places where other people see nothing.” – Camille Pissarro
Speaking of advocating, go read this action alert and get to it!
by Tim on November 8, 2008
I’ve been reading Unstrange Minds by Roy Richard Grinker, which I think should be on most people’s reading list. I saw this powerful passage and felt like I had to share it here. He’s talking about his autistic daughter, Isabel. I think his message speaks for itself.
Isabel has taught me that the unexpected, even the beautiful, can emerge even from the undesirable, like a lotus growing out of the mud, its beauty and purity unsullied by its origin. That beauty can be found in a single person, inside of whom there is something — no, not something ‘normal,’ but a brilliant light or an inner truth struggling to blossom.
So when people pity me for my daughter, I don’t understand the sentiment. I work hard for Isabel, but I don’t regret it or feel sorry for myself. At the end of the day, when I tuck her in, she’s not a case of autism, or even a child with social deficits and language delays. She’s simply my daughter. My job is to clear the land for whatever growth is to come, even if, sometimes, no one else believes it will happen.
(Unstrange Minds, p. 35)
Amen.
by Tim on October 26, 2008
When you’re around many other autistic kids besides your own, a whole array of behaviors don’t faze you, assuming you even notice them at all. If someone’s kid runs around in circles flapping their arms, about all you’ll get from me is a smile. If another kid goes stiff as a board and lies face-down in the mulch yelling and refusing to budge, unless the child is going to harm themselves, I hardly pay it another thought, or I think “yep, mine does that.” If a child bolts for the exits, I just non-chalantly hold out my arm and turn them back around. Our radars are tuned in for any unsafe behaviors, but beyond that, most of us are pretty “whatev” about the whole thing.
There’s a whole shared understanding among parents of autistic children. We’ve been there and done that; there’s no reason for you to explain or apologize or do anything else for that matter.
Recently I was talking to a parent when their child suddenly went into a full-blown, 9.0 on the Richter Scale meltdown. The child started flailing and hitting to the point where injury to self and others was a real possibility. I did what I normally do in that situation – stand ready to help intervene if more hands are needed to prevent those injuries from happening. I’m 225 pounds and 6′ 3″ with enough strength and leverage and a fairly high pain tolerance, along with enough know-how at this point to usually understand how I can help in those situations if needed. Not surprisingly, parents are pretty good about knowing how to de-escalate these situations with their own children, and in this case in a minute or two things were back to relative normalcy.
Still, this particular episode stirred something unusually strong in me, and I had to go sit down with it for a few minutes and figure that out. People who know me well know that I need to sit down and process certain things or else I just carry them around with me forever.
I went through a list of things to see if I could figure out what was different than usual, as typically these situations don’t faze me much. Was I judging them? Never crossed my mind. Discomfort about what the parents of non-autistic kids who saw all this were thinking? Nope. I’ve pretty much stopped caring about that. Feeling the need to jump in and fix it? Yeah, to some degree, but that’s just how I can be sometimes. But I knew this parent knew their child way better than anyone else, so that’s a fleeting thought I wouldn’t have acted on unless there was an imminent, real physical danger there.
Was I glad it wasn’t my child doing it? Oooo, that’s a hard one. That’s one of those issues we parents of autistic children don’t like to talk about. It’s almost a taboo subject. Sentences like “I’m glad my child isn’t a headbanger” will slip out in conversations and it’s common for the speaker to instantly look mortified. It’s also common for the parents they’re talking to – assuming their children aren’t self-injurous – to nod quietly and inwardly agree. It’s just that we can’t imagine what that would be like. J-Man does little more than slap himself on the head sometimes.
It’s not judgment really, but this unfathomable weight that we can feel pressing on us when we try to imagine what it’s like to have a child who repeatedly tries to put his head through a wall. You read about the autistic child who blinded himself because he continuously jabbed his thumbs into his eyes. I hear those stories and simply have no idea what to do with those kinds of unimaginable emotions.
What do you do when you see a parent who would stand in front of a speeding freight train, dig their feet in the ground, and dare the train to hit them in order to protect and save their child, and then see that same parent suffer utter helplessness and desperation at being unable to keep their own child from such wild-eyed, primal-feeling torment? Or worse, be unable to protect their own child from the next horrible injury that comes when their head strikes a stud in the wall this time rather than the empty space in between?
All I want to do is grab that parent and that child in my arms and say, “I’m sorry. I’m so, so sorry.” over and over again until it all goes away. That’s when I figured it out.
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If motherhood imparts traces of omnipotence, even the rhetoric of special needs motherhood raises the bar. Often we are called “superhuman” or “saints.” The “I don’t know how you do it” that special needs mamas hear implies that we must have some other-worldly qualities to help us make it through the day. The notion that we doubt ourselves, keenly feel our limitations, or labor over our decisions simply doesn’t line up with the power necessary to meet the challenge of our daily tasks. – Vicki Forman
This mama says exactly what I would say if I could write like that. I am not a saint. I am not a superhero. Sometimes I’m not even a very good mama. I get tired of sensory issues and say things like “Just eat” or “Just climb the damn stairs.” I get jealous that my friend’s little boy, who is a year younger than the J-man, is speaking AND eating table food. I get scared about what is next, and so I procrastinate instead of learning something new, because then I have a reason for failure, instead of being a failure. I read random books as a form of escapism.
However, I do have superpowers! I can call upon the power of the boob at a moment’s notice, and my super-sensitive-nose has saved us from taking the J-man somewhere moments after he’s pooped. I can sing many songs in many keys, and have learned to vary the pace so he can sing along. Mostly though, I can love him.
That’s my best superpower.
