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 Mary on December 5, 2009
For the past few days, we have been schedule freaks. OK, everyone except Dale Jr. He does what he does, when he wants to do it! For everything else, we have pre-planned, pre-made where available, and pre-decided, all before the kids get out of bed in the morning, or after they go to sleep at night.
The J-man’s teacher (hi Mrs. Jennifer!) and his OT (hi Mrs. Jamie!) came over on Tuesday afternoon, and had some good, solid, concrete suggestions about his current sensory issues. The suggestion that we all thought would be the best was to use a picture schedule at home like they do at school. I mean, we already had what we thought of as “routines” but those routines seemed to leave a lot of downtime, and downtime is NOT what the J-man needs right now.
So, man, have we kept him on track! And it seems to have helped, to a certain extent. We’ve still had the “stop, drop, and flop” happen a few times but there has been less stimming and random screeching. WAY less putting hands over ears. I am, however, tired of Pinky Dinky Doo, since we can only have the TV on during the scheduled TV time now, and that’s all the J-man has wanted to watch. Thankfully, he asked for Rachel today. YAY for Signing Time!
We’ve added an enormous amount of brushing. It seems to calm the J-man immensely, and he really likes it. I think if he could request it, he would. In fact, sometimes when we’re done with the “brushing and squishing” routine, he hands the brush back to get whoever is doing it to start again – and so we do.
We’ve changed our eating style – we used to eat in the living room, on tray tables, watching the evening news. My mother will be pleased to know that we now eat at the table, together. This means I have absolutely no idea what’s going on in the world right now, since, as I mentioned, if the TV is on, it’s Pinky Dinky Doo. I don’t stay up late enough to watch the 11 PM news. Tim is up that late, but it’s because he’s working. With all of the hands-on parenting, he’s not really getting any work done during the evening the way he used to. Yeah, our schedule still has some kinks to work out (like, when to MAKE DINNER for the parents) but I’m hoping we figure something out soon because otherwise, Tim just doesn’t sleep, and that’s bad.
Last night, it all came together because Dale Jr took a nap right about the time I needed to put dinner in the oven. The J-man and Tim were outside, swinging, and I scurried around getting everything ready. Right before dinner was ready, Dale Jr woke up, so while I fed him, Tim got dinner out of the oven, then I finished everything off and we sat at the table. The J-man finished his nuggets and applesauce quickly, then asked for “sticks.” When I gave him the container of sticks, Dale Jr was starting to get fussy sitting in his high chair.
Tim and I have given up talking during dinner because we’re shoving food in so fast, but we weren’t anywhere near done at that point. The J-man calmly picked up his container of sticks, walked around the table, sat down at the chair beside Dale Jr’s high chair… and stayed there, looking at him while eating. Since Dale Jr ADORES his big brother, that was enough to make him happy, at least for long enough for us to finish eating. The J-man saw someone in trouble, thought through how he could make it better, and did so.
That action brightened our day. It was just a little light, a match struck, but it stayed lit long enough to light a candle. I look forward to many more candles burning brightly.
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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by Tim on November 17, 2009
I wrote in “In Dreams Awake” about a dream I had that came true not long ago. Now I wish to write about another dream I had a few weeks back. It’s rare for me to remember dreams at all, and nearly unheard of for me to remember them in this much detail. So here is a dream that has not come true, at least not yet.
To unpathed waters, undreamed shores. – William Shakespeare
Dreams are illustrations… from the book your soul is writing about you. – Marsha Norman
I dreamed Mary and I were sitting in folding metal chairs – the gray and somewhat wobbly kind you see by the hundreds in church fellowship halls and outdoor events everywhere. We looked down and grass began to appear under us. The grass became mottled by dirt – bare places in the expanding grass – and was made uneven by tree roots slowly emerging from the ground.
Around us, buildings slowly began to reveal themselves, forming the boundaries of what became an enormous quad, a great lawn also ringed and permeated by oaks and magnolias. Then a sea of chairs coalesced all throughout the quad. Soon they were filled with people – an endless variety of families it seemed – from every generation and from every walk of life you could imagine, but none of whom we knew. They formed fully into being, sitting in perfect geometric arcs around the quad like a great parabola with a stage as its focal point.
A large, square formation of neat rows of chairs filled the space between the arcs and the stage, filled with students in their navy gowns, mortarboards, and tassels. Graduation? But for whom? I realized the ceremony was already well underway. Some students were lined up on the lawn to the right of the stage, waiting for their turn to cross the stage. One student was walking away from the stairs on the left side of the stage, holding her diploma in her hand, waving it triumphantly to her family. I could finally see the stage clearly, and it was filled with the usual dignitaries – principal, administration, teachers.
I still didn’t know for what person we were there. We have numerous nieces and nephews, friends working on higher degrees, or was this the past? I didn’t have a clue.
Then I noticed something very odd. No more names were being read. The ceremony had just stopped. The middle-aged man at the podium did not call out the next name. It was like everyone was holding their breath. Instead of impatience, I could feel anticipation swelling through the formation of students. You could see heads turning throughout the crowd. Many of them craned their necks up and around; some stood up to get a better look. The crowd knew something important was about to happen – everyone, apparently, except us.
For the longest time, nothing seemed to happen. But everywhere we looked, every single person was smiling. Many had tears in their eyes. All of them radiated happiness, drinking all this in like people savoring history. Then I realized that all of those jubilant faces were now looking at us.
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by Tim on November 5, 2009
It’s that time again when they update us on the progress of how the clinical definitions of autism may be redefined in the next version of the Diagnostic and Statistical Manual of Mental Disorders, or DSM. (Read more about this in our The Clinical Definitions of Autism, Asperger’s, and PDD-NOS post from a while back.)
The Neurodevelopmental Disorders working group for the DSM-V (V = 5th Edition) has an interesting list of issues related to ASDs that they are trying to reach conclusions on before the 2012 target date. (Note this is an older version of the list, but it’s still a fascinating read.) To say that whatever is ultimately approved for inclusion in this manual will affect the lives of both parents of autistic children and autistic persons is a serious understatement.
There has already been a lot of commentary and some controversy about this process. It does seem, however, that the working group assigned to revise the DSM for autism have tried to be methodical. careful, and sensitive to all the issues involved. Honestly, I think they were given an almost impossible task here. We won’t really know how well they succeeded until we see the first draft.
This NY Times article describes the latest controversial issue in this process as well as some ongoing ones. This most recent one has already drawn a ton of reaction and might easily be among the most talked about when the draft is released.
The big question being discussed now is whether Asperger’s as a specific, separate diagnosis will be left out of the next DSM. ‘PDD-NOS’ may also be going away. Without the draft actually existing yet, it’s hard to really dig into the real-world meaning of this, but for whatever these are worth, here are my comments about this and some other points.
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by Tim on October 2, 2009
My health has just been for crap lately, so crawling out from under my self-pity and general groaning – which I’m not good at in general – has required some serious conscious effort on my part.
Thankfully, the J-Man has his ways of snapping me out of it with yet more astonishing new things he’s achieved lately. His last two weeks at school this quarter – which ended a week ago – were like a quantum leap forward for him. His progress at school has been extraordinary, and it seems like every day at home yet another new beam of light comes shining out from him.
As I noted one of today’s great achievements, I got to thinking about all his recent accomplishments and newly-developed skills. I decided to start trying to write them down so I could both celebrate them and snap myself out of my self-indulgent funk. So, here are a handful.
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