August 2009

Simple Gifts

by Tim on August 31, 2009

This has been an eventful week here in the Flashlight House to say the least. Late last week we celebrated the anniversary of Mary’s 29th birthday! And tomorrow the J-Man turns 4. I can’t believe it; time goes by so fast.

We don’t do much in the way of birthday presents or parties around here really. We’re a pretty low-key bunch. About all Mary and I do for each other is the one not having the birthday goes and picks up takeout, we try to spend some unhurried time together, and we each get some additional me time that typically involves one of us getting a couple of hours out of the house sometime around our actual birthday.

The J-Man seems like he really couldn’t care less about birthdays. Actually, birthday parties routinely upset him. We’ve gone to his friends’ parties, and – understatement warning – rarely does he enjoy himself much. Strange places, crowds, noise, lots of running kids, etc. just don’t do for him, which I can understand. We go because we feel like he needs some practice at social events, but we know when he’s had enough and adjust accordingly. I can’t remember any of his birthday parties where he didn’t just burrow into somebody’s shoulder most of the time.

The concept of presents to unwrap doesn’t seem to click with him either. His general lack of attachment to things doesn’t lend itself to being excited about gifts on his birthday, Christmas, or whenever. And in what seems endemic to autistic kids, he absolutely hates the Happy Birthday song. He covers his ears and retreats into himself. Somebody really needs to do a research study on this phenomenon.

So, we decided to forgo a birthday party for him this year and celebrate it more in his style rather than in the way I think people (and for a long time us, too) expect it should be. We bought him a new swing for the swing set outside, one with a high back and built almost like a small, plastic recliner. He can’t use kid swings because when he gets excited and stims out, he lets go of the swing and flies off. (Thank God for mulch…) Obviously he’s too big for a toddler bucket swing. This new one is rated up to at least 100 lbs and has a five-point harness.

The weather is supposed to be absolutely beautiful tomorrow afternoon when he gets home from school. (70s in early September?!) What will be our birthday party then? Swinging outside – just us and my dad. Simple gifts. But the kind he loves most of all.

These past few days have gone like that too – one small but unspeakably wonderful gift after another shining through even in the midst of the craziness of everyday life.

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After all the stress, frustration, and general drama around last year’s IEP process (our first), this year’s was the complete polar opposite. It is beyond description to have a team of caring, creative, smart teachers and therapists who have the best interests of your child at heart working with you.

I’m not saying last year’s team – compiled by the county school system with no one on the team from the J-man’s current school – weren’t good people. Far from it. Some we liked quite well, but with a couple of people, we did have some adversarial relationships, and it was clear that it wasn’t exactly a cohesive unit of people used to working together. We got off on the wrong foot with our case manager – and never really got back on the right one – and we so totally distrusted the process at one point that we never really quite got over it.

The end result last year was that we completed the process knowing that without all the work we put into it and without all the pushing and standing firm we did, we very likely wouldn’t have gotten what was appropriate for where the J-man was then.

What we didn’t know back then was that we had gotten the IEP Powerball as an added bonus, almost by sheer luck (albeit with a system we admittedly gamed a bit). We got a school and a set of teachers and therapists beyond our wildest dreams.

To say this has been an amazing first year of preschool for the J-man would be a serious understatement. He continues to grow and thrive and learn and do things that astound us. He has worked so hard, and he has had the best teaching and support we could have ever dreamed of.

Around the table the other evening for IEP 2009 were Mary and I, his lead teacher, the teaching assistant, his speech therapist, his occupational therapist, and the school principal. We talked about the J-man’s many great accomplishments and the areas that still remain a challenge for him. In my mind, we were remembering and celebrating the great year he had and diving in with hope and enthusiasm to plan for the future.

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Dear Abby vs. A Critical Family Member

by Tim on August 21, 2009

Thanks to D’Julie for the heads up on this Dear Abby piece.

I found this interesting in the sense that conversations about autism that take place without any parent of an autistic child or autistic people involved can be recipes for all sorts of craziness.

It also makes you wonder what people are saying when we’re not around, but that’s another story entirely.

If they mind, I’ll take this quote down, but here’s the link to full piece. (Scroll down a little – it’s the second one.) I got curious about how you all might respond to it.

DEAR ABBY: My 8-year-old nephew was diagnosed with autism at the age of 3. He has made amazing progress with therapy and has advanced so he is practically functioning at his age level.

Our entire family has teamed up and joined a charity that raises money for autism. We have devoted our time and energy to this important cause. My sister (my nephew’s mother) refuses to get involved! She says she is “too busy.”

We all work and have other activities, yet we still make time to devote to this cause. She doesn’t work and has no other responsibilities outside her family that prohibit her from participating. She says raising money isn’t something she likes to do.

I don’t have much time for it either, but our family MAKES the time because this cause is important to us. It makes me furious that she won’t help raise money for her own child’s disorder. How can I talk to her about this without seeming confrontational? — RAISING MONEY IN FLORIDA

As a parent of an autistic child, how would you respond?

Click here to see what Abby said. (Second letter down.)

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A Tale of Two Babies

by Mary on August 19, 2009

[In case you’re wondering about the whole ‘Dale Jr.’ thing, for you non-Southerners, the son of Dale Earnhardt – a stock car racer of Biblical proportions – is often referred to as Dale Jr., but originally his nickname was Little E. So it looks like our Little E is now Dale Jr.! If that made no sense, just go with it.]

It may have been the best of times. It may have been the worst of times. I really can’t tell you. I remember very little of the J-man’s first year. It was really a blur. I was SO TIRED all the time then that now, when Dale Jr does something, I ask Tim if the J-man did that too… because I truly can’t remember. So, for your reading pleasure, a comparison of the two so far:

Sleep:

J-man: what’s that? Why would you think I needed to sleep? I have to be up to eat every 2 hours anyway, so why would you force me to try to nap (for 25 minutes initially, although we did get that number up to FORTY WHOLE MINUTES)? I sometimes will only sleep while in a carseat with the car moving, so Daddy perfected “driving naps on 540.” Also, putting me down “drowsy but awake?” HA HA HA HA HA. Seriously, just nurse me to sleep, then hold me for at least another 30-40 minutes to make sure I’m really asleep, then carefully, carefully, carefully put me down, leaning your whole upper body into the crib so we are touching until the very end. Plan to be back soon! If I make a noise, or shift slightly, go ahead and get up, because I will be. I was still waking every 2 hours at 7 months, and didn’t sleep through the night until I was 18 months old.

Dale Jr: obviously read those “sleep books.” I love this. I love my crib. Is my thumb there? Then we’re good. I started sleeping 10-12 hours straight per night at 2 months old. I am the poster child for “put me down drowsy but awake” which Mama figured out only because she really had to go to the bathroom, so put me down in my crib for just long enough to do that… and I was out when she came back. I enjoy napping, and have been able to self-soothe from the beginning pretty much. Mama and Daddy spent several nights waking up to make sure I was still alive because they couldn’t believe a baby could sleep that long.

Eating:

J-man: I will nurse and nurse and nurse and nurse and nurse. And hate the bottle. And nurse and nurse and nurse and nurse and never let go even while sleeping. PS: and nurse.

Dale Jr: I nurse when I’m hungry, and then I’m done. I don’t especially like to go to sleep nursing. I have taken a bottle a few times, and seem to be OK with it. I DO nurse about every hour during the day (when I’m not sleeping) but since I don’t nurse at all during the night, Mama is perfectly happy with that.

Size:

J-man: I am HUGE and outgrew some clothes before I ever got to wear them.

Dale Jr: I am HUGER and outgrew a LOT of clothes before I ever got to wear them. Also, I’m out of sync with brother’s clothes sizes, so the hand-me-downs aren’t helping at all. Also, I’m growing out of the 9 month summer clothes that Mama bought when I was 2 months old because I outgrew the 6 month clothes she bought when I was 1 month old.

How Mama’s work is going:

J-man: I occasionally made Daddy drive me to Mama’s office because I would go on bottle strikes and refuse to eat. I ate enough during the day to not starve to death, and then nursed until I could not nurse more at night which made Mama tired. People in Mama’s office got very angry when she went to pump every 3 hours. Mama is surprised she didn’t wreck driving to work everyday in a daze state from lack of sleep.

Dale Jr: Mama’s work people have heard me on conference calls because sometimes I need to eat, and are perfectly fine with that. They also realize Mama gets way more work done now that she’s home.

How Daddy’s work is going:

J-man: Daddy doesn’t get to work during the day. Ever.

Dale Jr: Daddy can work while I nap. Sometimes.

Maybe now is the best of times. It’s not the worst of times. It is a good time.

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Stop the Screaming

by Tim on August 15, 2009

Normally the worlds of Seth Godin – marketing and business guru – and autism don’t directly intersect. I do think he has incredible insights we could learn from about blogging, building communities, and organizing ourselves into effective advocacy for our children, but that’s for another day.

I wanted to draw attention to his recent post “Willfully ignorant vs. aggressively skeptical”, which I think captures my deep frustrations both with the health care and insurance reform debates here in the U.S. and all the civil wars great and small going on within the ‘autism community’. (Still searching for a better term.)

Here are some money quotes:

The screaming is a key part, because screaming is often a tool used to balance out the lazy ignorance of someone parroting opposition to an idea that they don’t understand.

As people of my generation are known to say, “Word.” There’s not a syllable in there that I could change to make that more true.

It’s easy to fit in by yelling out, and far more difficult to actually read and consider the facts.

I imagine that will sound plenty familiar to those of you who have been witness to or part of all the ‘debates’ going on regarding autism. Shouting down dissent has become a reflex for some.

I have repeatedly heard people yelling at these protests some screamed variation of, “I want my voice to be heard!” My reaction – No, you don’t. You want people to just give you and your views credibility and give you all the benefits of a seat at the table without having to do any of the work.

Allowing someone else to talk would create the possibility – heaven forbid – of dialogue and conversation, both of which require learning enough about your views to argue for them effectively, self-examination, long-term commitment, and, well, stuff that looks and feels like actual work. But I can see that since dialogue could expose someone who hasn’t bothered to do their homework, people in that position would find yelling to be preferable to either that or going ahead and doing the work.

It’s hard for me to think of a more critical issue facing this generation and our children than health care. This quest to find the best possible system of care and access to it – regardless of your views – requires our best efforts and utmost commitment to ensure the health and well-being of our families, communities, states, and country.

I imagine I’m mostly preaching to the converted here and the people I’d like to say all this to wouldn’t likely ever read our blog. But I’ll say it anyway.

Being lazy, parroting the idiocy of others, yelling without ever listening, and not bothering to learn anything disgraces our nation and what we stand for. And most of all, it disgraces our children and the trust they put in us.

Just. Stop. It.

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I’ve been following a series of brilliant posts written by Bev at Asperger Square 8 about her reflections and development of a checklist regarding neurotypical privilege.

For parents like us who live in a very insular world of toddlers and early elementary school children, we tend to completely miss the broader conversations going on about what kind of society and culture our autistic children are growing into. And by being so focused on everything going on in the present (though understandably so) we also miss out on seeing all the possibilities that are waiting out there for our children’s futures. Within the chaos of everyday life, perspective is hard to come by. But this – among many other reasons – is why if you aren’t reading blogs written by autistic adults, you should be. (Asperger Square 8 can – and should – be one of your first stops.)

But enough of my typical rambling preamble. Check out her latest draft of “The Checklist of Neurotypical Privilege” – it’s eye-opening and challenging and brilliantly written. And for me at least, it is one of those landmark, defining pieces of writing I’ll be coming back to over and over again for both a swift kick in the butt and some real perspective on how to be the best possible parent to the J-Man and advocate for autistic persons of all ages.

Biggest lesson I’ve learned so far from reading her work? I have a lot to learn.

Note – You should be able to follow future revisions to her checklist at http://aspergersquare8.blogspot.com/search/label/privilege.

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The Cost to Raise a Child and Yet More Autism Disparity

August 5, 2009

I saw the results of a study this morning that gave the total cost of raising a child (in our lingo, a neurotypical child) into adulthood. Let’s compare that to the cost given by a Harvard study a couple of years ago on the cost to raise an autistic child into adulthood. Average cost of […]

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The Number Seven – Happy Anniversary to Us Edition!

August 3, 2009

The number 7 is considered especially significant in many cultures and religions. It exists as an important symbol in a variety of scriptural texts around the world. To avoid going off on a likely very boring tangent, I’ll leave it at that and just say… Happy 7th Anniversary to us! Together we became four this […]

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